Be Strong in the Lord

When Acting Causes Change

2012-02-12T13:29:00.003-06:00

Just act! That was today's sermon at church. My favorite quote from our preacher was "If you fail to act, you might miss your miracle." He referenced the widow who fed Elisha, and she was blessed with enough food to survive the famine. I've never been one who hesitates to act upon something. Take me shopping, and I go in to get what I need and get out. When Reece was born, I was in immediate "do something to help him" mode. Maybe I'm somewhat impulsive, I don't know. I just can't stand to hee-haw around about something when there's obviously something that can be done. So, why am I having miniature panic attacks here lately? Well, I'm so convicted that working with preschool children with special needs is my calling, yet I'm terrified of how our family dynamic will change when I start back to work. Reece has done so incredibly well with me here at home, am I going to be messing up a good thing? I can barely keep up with housework, paperwork, etc now. What will this house look like? I know, know, know that God is calling me to do this, and I trust Him in so many areas of my life. I don't know why I have this anxiety. I guess maybe because it will be such a huge change. I'm ready for a change, for sure. If I'm not trying to rearrange furniture, I'm riding through my dream neighborhood (seen here, by the way). I'm changing Reece's room (the big reveal will be soon!), and I'm SLOWLY changing how I exercise. Notice I said slowly! I know I won't ever get in that dream neighborhood nor afford Reece's new school if I don't go back to work, so both the desire and necessity are there. Our preacher also said this morning that some people go through "analysis paralysis" where they analyze every little detail about a big decision that they are clearly called for. I think I might be in this stage! I need to just do it, and trust that God will work out all of those details! He has blessed us with a wonderful family, amazing friends, and an outstanding church. Reece is about to be a part of the launching of a new covenant Christian school, where we feel he will receive all of the love and support he needs. So what, if I'm not there with him every waking moment. In all honesty, it might do us some good to get away from each other! Ha! Fresh perspectives for both of us might just change everything for the positive!

Ok... I've gotten this all of my chest now. I'm going to relax and trust that God has this! Please keep our family in your prayers as we do some "changing" around here!

With love,

Beth

P.S. I've noticed lots of international travel on our blog. If you visit here from another country, please stop and introduce yourself by commenting on a post! I would love to "meet" others interested in Escobar Syndrome from around the globe!

Back to Preschool!

2012-02-10T08:24:00.004-06:00

This was one sick baby. So grateful for modern day medicine.

Subway can always bring a smile to his face!

Thankful for our sweet friend, Kimberly, who brought play-doh! It was a life-saver!

Mama brought out the walker the day he got home. It worked for a little while, then he let go and started walking by himself. Of course the next day, you know he was hurting. But after a couple of days, HEEEEEE's BAAAACK!!! (and, yes, that's my leg he whacked!)

Just dropped Reece off at preschool for the first time in like 2 weeks. He was so happy to be back, but he immediately told Seth (mid-hug) " I can't run because I might cough." I've tried to explain that he is well and his cough is gone, but he's really sticking with the whole "don't run around or wrestle with Ridley" speech I gave him the day we came home from the hospital.

I have the morning to myself, which will be spent working out at the YMCA in a bit. Not exactly my idea of fun, but I know after eating all of the junk I ate in the hospital, my little tail needs some exercise!

No big plans for the weekend. At one point, Nick mentioned going out for Valentines Day, but then he decided we probably shouldn't. So, it looks like we'll be spending the weekend in the house, which is just fine with me! Certainly beats the hospital!

With love,

Beth

Back on His Feet

2012-02-08T14:37:00.002-06:00

So, the laptop is making things a little easier for me to update the blog if you haven't noticed! Reece is slowly getting back up on his feet. This was during a 10 minute standing he had this morning after we went up to the school for his class picture. You think his shirt is big enough?

He had physical therapy at 12 and came walking out to the car with his therapist! My mood instantly changed! He is still limping a bit and crouching more than usual, so we will continue to work on strengthening his quads. Those were already weak, and apparently, laying around only makes them weaker.

We went to eat Mexican after therapy, and I told Nick I felt so weird being out and about. That lifted my spirits as well. I think just having Nick here to help take some of the pressure off of me has helped tremendously.

I also finally spoke with someone at Medicaid regarding the denial of Reece's aquatic physical therapy back in November. We finally solved the mystery and turns out occupational therapy's goals and the goals submitted by the aquatic therapist were too similar. Don't ask me how, but that's what they said. Sooo, those two therapists will get together and the aquatic PT will resubmit. He definitely needs to be back in more extensive physical therapy now.

I'm still working on his bedroom, and it's coming together, slowly! I decided I didn't like the white comforter, so another one is on its way. It really is turning out pretty cute if I say so myself. Reece really likes it, so that's all that matters!

We are still overwhelmed with how many people care about our family. Just this morning one of Reece's classmate's mother called me and practically begged me to let her do something. Truth is, I have gotten so used to doing so much, it's hard for me to think of what I need help with. I'm so independent that I think "Well, technically, I could do this or that." Nick says we've become numb to our whole situation and never think about how it looks to the outside world. I guess he's right. This has become our normal, and accepting help seems indulgent. Crazy how perspective can change in 4 years.

Reece is napping now, and Nick and I are catching up on DVR shows. I did manage to pick up my house and vacuum a bit, so that made me feel even better! Oh, and a chicken is in the crockpot. It feels so good to get back into routine!

With love,

Beth

Not My Day

2012-02-07T16:42:00.003-06:00

Well, I just thought getting home would get things back to normal. Reece has been off of his feet all day because of knee pain. First thing this morning, his knees buckled under him, and he started crying that his knees were hurting. I know that this is all because he laid up in a hospital bed for 9 days, and I could kick myself for not asking them to bring in a PT to work with him. It just never crossed my mind. I have given him ibuprofen, a warm bath, put weights on his legs, and now he's sitting in Nick's chair with an ice bag on his knee.

I have been so extremely frustrated today. My house is a wreck on top of growing too crowded for a family of 3 with 3 pets. Stuff is everywhere! Lola threw up her heart worm medicine on the carpet earlier, and I had to steam clean that. Reece threw up red Jell-o last night on his bedroom carpet, so the steam cleaner is getting quite the workout.

Walmart called this morning saying that I did not pay for Reece's medicine last night. I honestly didn't even notice. The pharmacist consulted with me, and because Reece has Medicaid secondary insurance, I just assumed that everything was good. They asked me to come back up there at my convenience. That wasn't going to happen today, and honestly, I think it was their fault. They should correct it. She didn't even know if Medicaid had been filed. Ugh! I shouldn't get upset with a pharmacy since my husband works at one, and I should have just gotten the doctor to call in the prescription to Nick. I was just trying to get Reece's medicine as quickly as possible. Never again.

Today just has not been my day. Please pray that whatever is going on with Reece's knees corrects itself. I feel terrible for him, and I don't know what to do. I've been so frustrated that I yelled at him a few times, and I felt awful afterwards. I know he's frustrated too. Please, Wednesday, be a better day!

With love,

Beth

We are HOME!!!

2012-02-06T15:51:00.002-06:00

Thank the good Lord, we made it home this afternoon! I dunked Reece in the bathtub, and we are chilling out in our pjs waiting for Granny and Papa to bring us supper. I have a feeling we will ALL be sleeping very, very well tonight!

We appreciate all of the prayers you sent up for Reece! He's back to wrestling with the dogs and talking my ears off!

With love,

Beth

Longest Hospital Stay EVER!

2012-02-05T17:44:00.002-06:00

Eight surgeries and this has been the longest hospital stay of Reece's life. Even with RSV last year we only stayed 6 days. This one sets the record at 8 nights. Needless to say, the walls are collapsing in on this hospital room. Every muscle in my body is extremely sore from either sleeping on a pull out chair or scrunched in the bed with Reece. Reece now feels better, so he's extremely restless and ready to get out of here! Luckily tomorrow morning we are being set free!

I am so ready to get this boy home and give him a good scrub in the bath tub!

Reece and I did have church in the room this morning. Our church has live streaming video of the 11:00 service, and boy did I need to hear the sermon on being courageous. Like I said a couple of posts ago, I'm convinced Reece's illness was an attack from Satan. The sermon this morning gave me the strength I needed to keep going. Thanks again to my sweet hubby for giving me the laptop that made me able to watch church in the hospital room! Reece and I were doing some singing and praising up in room 273!

So, it's our last night, thank goodness! My bed is going to feel amazing tomorrow night. That is if I can not stay up trying to listen to Reece's every breath on the monitor!

With love,

Beth

Slowly but Surely

2012-02-04T16:46:00.002-06:00

He's getting better. Today was a much better day. They have taken him off of iv fluids and have decreased his breathing treatments to every 3 hours. He is much happier now! He still has a nagging cough, but I think that lasts for about 3 weeks with RSV.

We are hopeful that we will get to go home either tomorrow or Monday. We haven't asked yet just because we've learned not to.

Late yesterday afternoon I decided to email Reece's geneticist here to ask if there were anything else the doctors needed to be looking at. I mentioned the Mestinon (trial Escobar drug), and he emailed me back a few hours later after researching it. His advice was to halt the Mestinon until Reece recovered as it can cause the smooth muscle lining of the airways to constrict further exacerbating the asthma. So, I talked to the nurse about it, and she said she would page the doctor. Second shift nurse came in and said that the other nurse said we were wanting to stop the Mestinon. I informed her that yes we were, but we hadn't heard back from the doctor yet. She told me that was fine, we could just hold his dose and talk with them in the morning about it. So that's what we did. Well, I left this morning to go home for a bit while Nick stayed with Reece. I called for a report and Nick said the doctor was not happy that we had stopped the Mestinon without consulting them. What???!!! Apparently, she was never paged and now it looks like we went behind their backs with Reece's treatment. On top of them knowing Nick is a pharmacist, Nick said there is no telling what Reece's chart looks like. Oh well. Not my fault.

As I sit here typing, I look around and see my husband on his iPad and my 4 year old propped up with his iPad. Oh, and I guess I should mention that I'm typing on my brand new MacBook Pro laptop my hubby just went and bought for me for Valentine's Day. We are high tech family now! Good thing Reece's new school will be highly science and technology based!

Well, that's all for now. Someone's at the door... breathing treatment time!

With love,

Beth

Day 5

2012-02-02T09:25:00.003-06:00

Well, so much for staying out of the hospital this year. We are now on day 5 of being at Blair E. Batson Hospital. Sunday night we brought Reece into the er because of coughing and high fever. Despite our efforts at home, we could not get either one to subside. Luckily, they took us right back. They were going to test him for the flu and do a chest X-ray to check for pneumonia. I asked if they were going to check for RSV, and the doctor said he was really too old for it. I informed them that he was in the hospital for it last year and he was technically too old for it then too. So, they swabbed him for it, and the test showed him immediately positive for RSV. They began nebulizer treatments on him, and after 9 rounds, they decided he needed to be on continuous albuterol. That lasted for 2 hours and still no improvement. So, at 1:30, it was decided that he would be admitted... which meant an iv. Reece has severe anxiety about ivs because he is such a hard stick. It always takes multiple attempts to get one in. After 4 tries, it was finally inserted in his foot, and we were moved to the 2nd floor. Tuesday morning at 3:00, the iv came out, and they had to reinsert it. He and I both cried together. I hate it.

He has been on the continuous albuterol treatment all day every day since midnight Sunday night. Finally, today they are saying they are going to bump him down to receiving treatments every 2 hours. The coughing has been horrendous. The RSV aggravates Reece's asthma and on top of his reduced lung capacity related to Escobar, it just makes for a big mess. The first two days I was terrified that his lungs were going to give out. Now the coughing only comes in one hour spurts. I didn't realize how tired I was until last night when I ran a red light and almost hit a car going home. Scared me to death! Luckily, I did sleep last night, even sleeping through his O2 sats dropping to 83% and being put on oxygen. I never heard the alarms going off. I'm glad the nurses did! Geez!

My mother asked me the other day why this had to happen. I've thought about it a lot, and I now I think I know. Satan is angry. My work for the Lord in the special needs ministry recently is really growing and that might mean gaining more troops for God's kingdom. I feel as if I'm fulfilling my God-given purpose, and things are looking up. Satan hates that. He wants to discourage me from continuing and has thrown this test my way. Well, I'm sorry Satan. I still am going to remain faithful to my God. He will reign!

Hopefully, we will be home by the weekend, and things will return to normal. I am thoroughly convinced that we have the BEST family and friends. I would have never dreamed I would have so many friends who care about me and my family so much. Texts, emails, little gifts, visits, meals, and the list goes on. Everybody wants to do something to help. That's my weak point...accepting help. I am so grateful for friends and family who realize that and just ignore my stubborness and do something! I couldn't do it without them!

With love,

Beth

Battle with a Cough

2012-01-29T12:47:00.002-06:00

Reece had his 4 year annual check up on Friday weighed in at 27 lbs (with braces, so probably like 25 lbs) and measured 37 inches long. He is a wee little guys, but dynamite comes in small packages!

We haven't had to go to the dr in months, and wouldn't you know the day after his check up, Reece comes down with a cough. Of course, it has to be the scary kind with wheezing and fast breathing. After his RSV hospitalization this time last year, I am a little paranoid. I was up with him all last night, and we have him on nebulizer treatments every 4 hours, mucinex, and benadryl. This morning he added a fever of 102 degrees, so Motrin was added to his medicine meal. His little cough is so weak that it doesn't really produce much in the way of clearing the mucus out. Many Escobar kids have to use a cough assist machine to help them when they are sick, so I'll be talking with the pulmonologist about this in March. I am just so terrified of pneumonia with him. We are staying confined this week until it passes. I'm sure I'll be ready to scream because I am not one who likes to stay in the house!

Please say a prayer for this to pass quickly without a trip to the hospital. Trying to stay out of that place in 2012.

With love,

Beth

Growing Up...

2012-01-24T12:30:00.000-06:00

Well, the time has finally come to redecorate Reece's room. Nick has been on me for over a year now because his hospital sign is still hanging on his room door. I suppose turning 4 years old warrants a "big boy" room. Blah! All of that time I spent between those baby blue and cream striped walls looking at the hanging nursery rhymes is coming to an end. How can someone become so attached to a room? The hours I spent planning and making sure everything was just perfect for his arrival will only be in pictures now. Ok, I'm being really sappy. I just need to stop thinking so deeply about it!
So, let's be excited! This afternoon, he and I are going to pick out paint and accessories. We're going with a Disney theme, but not a cartoony one. Light gray walls, black Mickey Mouse face wall decals, a castle chalkboard wall decal, and Peter Pan flying to Neverland wall decal. We're going with white bedding (yikes, I know!) and bright accents and pillows. Reece is really excited! He's ready for me to paint TODAY! So, here we go. A major project will be underway, and while it's sad to move on from a "baby" room, this will be special too because he will be helping me plan and decorate!
I'll post a picture when our project is complete!
With love,
Beth

Playing Catch Up

2012-01-21T13:37:00.007-06:00

I am sooo behind on blogging! I'm going to go ahead and issue a warning... it will be a long post!

First topic- Reece's Birthday Extravaganza! Thursday, the 12th, was Reece's true birthday, but I'm not sure he fully understood that after all the celebrating he did! We managed to get 20 family members together tonight at Mellow Mushroom where Reece devoured two slices of pizza, a brownie, ice cream, and 1 1/2 glasses of sweet tea. You can pretty much guess how wound up he was that night! On top of enjoying his birthday supper, he also racked up on money and iTunes gift cards. You wouldn't believe how much "free money" this child got to spend. He's really good at spending it too. It's almost gone. On Friday, I baked a chocolate chip cookie cake for Reece's and his buddy Seth's birthday at preschool. Reece was born one day later than Seth, so that makes their friendship even more special! Friday night, we loaded up for Moni's birthday party at Lee's Steakhouse in Sebastopol. Reece was born one day before Moni's birthday, so they get to share a birthday month too! Saturday was another big day. First we went to Seth's birthday party at Performance Sports. I must admit that when Nick and I saw where the party was going to be, we were dreading it a bit. We had no idea what to expect and were afraid Reece wouldn't be able to really do anything. Well, he had a blast! The boys all wore football helmets and ran around on the indoor football field. Reece was definitely able to do that! After Seth's party, we ran a couple of errands and then headed to Selah Music Instruction for Reece's Kindermusik birthday party. Let me just tell you, those kids had a ball! I knew it would be fun, but when Mrs. Sheila brought out the bubble machine, it was on! We had about 16 preschool age kids running around playing instruments and dancing. Of course, Reece was the ring leader! It was an amazing birthday party, and I'm so thankful he had a good time! After all, if you remember, last year's party was in Disneyworld. That is a tough one to top! After the party, our friends, The Chambers, came over for hamburgers and playtime! Our 3 kids are finally getting to the age where they really play well with each other, and it was so much fun to watch them. Needless to say, Reece was EXHAUSTED by 11:00 that night. He slept in until 9:30 the next morning... and so did we!

So here are pics from the birthday bash!

Birthday Supper at Mellow Mushroom!

Mama and the birthday boy!

The Saints' helmet was already taken, so he settled for the Raiders

Can you find him?

The Three Musketeers!

Playing the drums with his buddy Noah!

Posing with his Batman birthday decor!

Reece and AnnaLea taking a ride in the mini cooper!

On to our next big adventure... this past Thursday Reece had an appointment with Dr. Robbins. Dr. Robbins was Reece's very first surgeon, operating on his feet at only 4 months old. I shed tears when we were accepted into Shriners and were told we had to leave Dr. Robbins for them to care for him. Retrospect- was it a good thing that we went to Shriners? Well, it saved us money before Reece was accepted into Medicaid, and the knee surgery was a great success. I guess, God led us there at that time for those reasons. Do I regret the second foot surgery we had there? Yes and no. I'm glad that Dr. McCall lengthened his anterior tibial tendons, but I really wish we wouldn't have given him permission to do bone work once he opened up Reece's feet. Then, we moved onto Atlanta, since we love it there so much. Our most awesome upper extremity surgeon referred us to Dr. Schmitz for Reece's feet. We were trying to consolidate everything in one location. I liked Dr. Schmitz, but I didn't love him. He never spent the time to really look at Reece and watch the way he walks and stands. That always makes me uneasy with doctors. So, after all of the running around about Reece's feet, we decided to come full circle and pay Dr. Robbins a visit for his opinion. I immediately remembered (even though I was in a fog the first 6 months of Reece's life) why we loved him so much. He comes in, and of course remembers Reece. People I don't even know remember Reece! But, the amazing thing was that Reece, totally unprompted by neither me nor Dr. R, runs up to him, wraps his arms around him and rests his head on his chest. I was so in shock. I had never seen Reece react this way with a doctor! The next hour was filled with me giving Dr. Robbins the background of what Reece has had done, him taking us into his office explaining the X-rays, and watching Reece walk back and forth multiple times down the hallway and videoing it. Funny thing happened in all of this. While Dr. Robbins is showing me the X-rays, I'm holding Reece, who is in his underwear and tshirt. Dr. R begins pointing out the talus, the cuboid, and the navicular bones. Reece stops him and says, "I think that's what's making my feet hurt." Dr. R fell out laughing and said, "Well, it very well could be, buddy! Thank you for your input!" So here's what the X-rays showed. Reece's talus bone is still not pointing horizontal like it should be, but it's not completely vertical either. However, he has a breakdown in the Chopart's joint. It's also known as the mid tarsal joint, seen below.

This breakdown is what could possibly be causing the pain Reece has been having, but it's not for certain. Dr. R said that it could just be from weakness in his feet from wearing the AFOs all day every day. Now the question is whether we leave it alone or try to fix it. He said that we could make the X-ray look better by operating, but would it improve Reece's function any. Well, as timing would have it, this next week he is headed out to California for the big orthopedic surgery conference. There he will see Dr. Mosca, the surgeon from Seattle whom the Rudders use, and also Dr. Dobbs, another prominent ortho surgeon who briefly looked at Reece's feet at the AMC conference this past July. According to Dr. Robbins, these are the top 2 surgeons in the nation, so he's going to take Reece's X-rays and the videos and pictures he took and consult with them. He gave me his email to send him a reminder to pack it all :) That's another reason I always liked him... he gave me his email! All in all, I was very happy with our visit. First, he actually spent time watching Reece, and second, we learned about something going on about which we had no idea. I'll post when we hear what Mosca and Dobbs say.

And, believe it or not, I have a picture. Reece took his iPad for entertainment in the waiting room. Well, when Dr. Robbins came in, he grabbed the iPad and Reece and shot this pic. Can you tell Reece thinks Dr. Robbins is pretty cool?

Reunited!

Last, but not least... for a month now I have worked my little tail off on organizing a parents' night out for parents of children with special needs at Pinelake Church. The response has been overwhelming from both families and volunteers. Well, last night, Revive went off without a hitch! Everything went as smoothly as I had it in my mind, which was totally the answer to my prayer. I could see God being glorified through all that we did, and I loved it! We even had one child cry when the parents came to pick him up! He didn't want to leave! The volunteers were amazing! I think some of them had more fun than the kids! So, to sum it all up, our first Revive night was a HUGE success! I can't wait for the next one! But... today I am recuperating and having a night out with my hubby. A movie and dinner await us while Reece is spending the night with Moni and Daddy Da. So, I'm off to get dressed!

I hope you have a great weekend!

With love,

Beth

Living a Special Life...for 4 Years Now!

2012-01-11T22:33:00.005-06:00

In a few hours, our baby will be turning 4 years old. Of course, I always get really sentimental around January 12. He wasn't supposed to live. He wasn't supposed to walk. But, they were wrong! Through his 4 years on earth, he's been through 8 major surgeries, countless hours of occupational therapy, physical therapy, and speech therapy, medical tests no child should have to endure, and dozens of doctor appointments. We've traveled many miles for healthcare and spent a lot of money doing this. While other kids were headed to the playground with their mom, Reece was stuck at home with his mom trying new tips and tricks on him. He was confined to casts for the first 6 months of his life, only to be put back in them again... and again. All of this, and he still lights up a room with his smile and personality. These 4 year have been tough for me and Nick as well. These things are not what you hope for your child. That being said, we wouldn't trade our experience for the world. Do we wish he was healed and never had to endure so many painful things? Yes, of course. But, the fact is, God has chosen him for special work, and I know that one day Reece will totally get that and be proud he is the way he is.

Nick and I attended the Sanctus Real concert back in December. The lead singer, Matt Hammit, wrote a song about his son who was born with special needs. After watching Nick tear up and fighting to choke back tears myself, I knew I wanted to do this for Reece. So, here it is, birthday boy. You have all of us.

Happy Birthday, Reece!

We love you!

Conversations with Reece

2012-01-04T21:10:00.000-06:00

Are never dull! Here are just a couple that we've had today.

Me: Reece, tell Daddy about having a baby. (So, this came up last night after we visited my best friend in the hospital and their newborn baby girl.).

Reece: "Me and Dibby (imaginary friend) had a baby. We had TWO babies!

Me: "What are their names?"

Reece: "Dibby's baby is Carolyn Jane (one of his friends from church), and my baby's name is Macy. (no clue where that came from.)"

Nick: "So you had a baby and Dibby had a baby?"

Reece: "Yeah."

Nick: "Boys don't have babies. Babies only come out of Mamas' tummies."

Reece: "No. No, they don't! Some boys have babies!"

Nick: "No, they don't."

Reece: "Yes, they do!"

Nick: "No, Reece, boys don't have babies."

Reece (with a sigh): "I don't wanna talk about this anymore."

Next conversation...
Takes place in the bed after we read about Noah and the ark (where he pointed out the animals in the picture and said "Lions eat people. They're going to eat those people in the ark.") The questions that go along with the story refer to how God helps us do things that are hard for us.

Me: "Reece, what is something that is hard for you to do?"

Reece: "Get in a spaceship with Daddy."

Not the answer I was expecting, so I rephrase.
"Reece, what is something that you have a hard time doing?"

Long pause...

Me: "What about using scissors? Is that hard sometimes?"

Reece: "Yeah."

Me: "God can help us with something that is hard just like he helped Noah build the big ark.
How can you ask God to help you when something's hard?"

Reece: "Um, I can just holler."

Seems he has really taken the worship song "Shout Out His Name" to heart.

Ah, my child... definitely one of a kind!

With love and laughs,
Beth

Wrapping Up 2011

2011-12-31T22:28:00.023-06:00

Well, it's 10:30 New Year's Eve, and I'm trying to stay awake until midnight, so I decided to update the blog. The best way to tell you about our family's Christmas is through pictures, so here we go!

Baking our annual gingerbread men!

Some serious concentration going on here

Ready to pop 'em in the oven!

Testing them out!

Jesus' birthday cake

Granny and Papa gave Reece his first car... a mini Cooper! Now, Mama and Daddy want one!

Ever seen a 3 year old so excited about a blu ray player?

His gift from Moni and Daddy Da

Thrilled about his new Darth Vader mask from Mama and Daddy

...I'll have to pick back up later. My pictures won't load! AAAGGHH!...

Ok... I'm back. Maybe the new year will be kinder to my uploads.

The pups on Christmas morning... I don't know if we could ever get them to pose like this again!

Santa brought Reece an iPad, and it was a hit!

This kid has it made at Moni and Daddy Da's.

Reece with Moni and Nanny

Super Reece in his usual state... mouth wide open.

The Barhams

On to Aunt Suzanne and Uncle Byrd's house for more food and presents...

Daddy was playing with the camera and took this pretty cool shot.

The day after Christmas, Reece and I loaded up with my sister Suzanne and headed to the Smoky Mountains. In retrospect, leaving the day after a long Christmas day was not a great idea, but we had an experience! Reece's favorite was the Dixie Stampede. In general, Gatlinburg was way too crowded and cold. We were glad to get home! The picture above is Reece at Bubba Gump Shrimp Co.

I'm an owl freak, so I had to get a pic of Reece in an hatched owl egg at Dollywood. You can barely see the little squirt.

Which brings me to the tallest man in the world at Ripley's Believe it or Not... This animatronic man would stand up and sit down by himself. As you can tell from Reece's expression, he wasn't so sure about standing next to a fake moving man that was almost 6 feet taller than him. Still a funny picture though!

This picture pretty much sums up how we are all feeling at this point. This was at the Christmas on Ice show in Dollywood. I thought Reece was all into it, but he was in front of me, so I couldn't see how he really felt until we got up to leave. The holidays wore us out! We got back on Thursday, and Nick left for the Music City Bowl early Friday morning. We finally have everyone back under one roof!

Our decorations are all down now, and we are trying to get back into a somewhat normal routine around here. School starts back on Wednesday, Reece's 4th birthday is on the 12th with his party on the 14th, and I start my online special ed workshops on the 11th.

Now, let's just hope that 2012 goes by lots slower than 2011!

In other news, Nick and I have our 10th anniversary coming up in 2012! We originally thought we might want to go back to the Bahamas, where we honeymooned, but now we have decided to go to Costa Rica! I've always wanted to go there, and Nick said he'd rather go somewhere we've never been, so we made our decision! We both looked over pictures of the overwater huts in Bora Bora, but with the plane tickets costing $4,000, that just wasn't going to happen! So, one day, when airfare goes down, maybe we'll be looking through the coffee table at the crystal blue waters of Bora Bora. For now, I'm just stoked about exploring a rainforest, riding horseback on the beach, and, if I can muster up the courage, snorkeling! We are staying at Gaia Hotel and Reserve, and it looks awesome! We just booked it today!

My hopes for 2012... 1. NO SURGERIES!! 2. A teaching job at The Little Lighthouse 3. Reece's continued progress 4. A successful special needs parents' night out at Pinelake

Throw in the loss of a few pounds and a big wish for the beginning talk of building a new house, and that will equal a pretty perfect year!

With love,

Beth

And God Bless Us All, Everyone!

2011-12-20T20:17:00.005-06:00

Reece placing his shepherd on the nativity set.

Reece and his best pal, Seth. Reece and Seth have been together for 3 years now. This precious blonde headed little boy may just be Reece's guardian angel at school. Reece comes home talking about Seth all the time. I watched them together at the party, and it's just like Seth totally "gets" Reece. He would hold Reece's hand around a crowd of kids, and as you can see in the picture, had his little hand on Reece's shoulder. Ms. Amber told me back when Reece had his last surgery, the class was going to pray for Reece. Seth piped up and said that he wanted to say the prayer. Every time I pick Reece up, Seth is right beside him whether he's pushing Reece's stroller chair or just standing beside him. You may think I'm crazy, but I really think this little boy is something special, and I want his parents to know how much we love him for how he is with Reece. So, Kim and Todd, I hope you are reading this! Thank you for raising such a beautiful spirited child! Now, let's make sure they stay together, for my sanity :) !

Reece painting his gingerbread man ornament. I had to encourage more than one stroke because after that first one he was "dowone!"

The finished product! Bless him! I was making him smile when he was sick to his stomach. Sorry, peanut!

Opening presents with his class!

So, I introduced the child to a wonderful thing... s'mores!

Sorry that I haven't updated in a while! My mother had her surgery last week, and everything was very successful. The surgery only lasted about 40 minutes, and she was home the next day. We were so relieved when we talked with the doctor afterwards. The family was definitely on edge the whole time given what she went through last time. Thankfully, the surgeon said that he did not suspect that the cancer had spread to her lymph nodes. Of course, he took two out and sent them off just to be certain. We still haven't heard from the pathology report. It should be any day now. Once again, our God was faithful to our family. Many prayers were poured out over her, and I firmly believe that they were answered. God still has some use for Granny here on earth!

Reece had his Christmas party last Friday. I was able to try out our new camera (a spontaneous splurge by me and Nick), but I'm still trying to figure it out. The old DSLR was just too clunky for us, so we're selling it on ebay and using the money to help pay for our smaller camera that works like a DSLR (supposedly). Again, still learning all about it!

Back to the Christmas party... when I arrived, all of Reece's class was sitting in their seats listening to Ms. Amber, and Reece was over at a table in the corner. My first thought was that he was in trouble, but then Ms. Amber told me that Reece hadn't really been himself today. He had stayed with Moni on Thursday while Mama had her surgery, so I thought maybe he was just tired. Ms. Amber said she asked him if he ate breakfast, and he said "No. My mama made me toast and jelly, but I just wanted to wait for the party." Ms. Amber asked what his mama said about that and he said, "She said, 'Whatever, Reece.'" Yep, he was right. Exactly what I said! This child and I spend 30 minutes every morning arguing about what he's going to eat for breakfast. He just really doesn't want to eat, and I can't blame him. I've never been a breakfast person myself. But, there are some mornings where I just don't care if he eats or not. I get so frustrated with that child sometimes. However, later on that morning, I would learn exactly why he didn't want to eat that particular morning. He made it through the party, opening presents, and eating snacks. After we left the school, we headed over to pick up Moni's Christmas gift which we had ordered. When we walked into the store, he immediately held his hand up to his mouth and said "I need to throw up." I am very thankful that he has learned how to recognize the feeling and warn me! I didn't really have any where to go except back out of the door and into the parking lot where he let it all spew out. Let me note that Reece has NEVER thrown up at our house. We are ALWAYS out somewhere when this happens, so I've become quite the pro at public vomiting. I cleaned him up with the roll of paper towels I had in my car and headed straight home. That was it. Nothing else except for a slight fever that night. The next day he was feeling about 80% better. 12 hour stomach bug? Who knows? I'm just glad it didn't last long.

I got some really good news this week! I've been registered for Mississippi College's non-degree graduate program for a couple of months and had registered for the first of four classes I needed to obtain special education certification. While I was excited, I was also very apprehensive about #1 Spending $5,000 over the next year with no financial aid

#2 Driving back and forth 45 minutes each way on Thursday nights

#3 Giving up that time with Reece and Nick

So, my sister was telling me that her future daughter-in-law who is an education major told her that I really only needed to take a test to become certified. I was skeptical because my teaching license is expired, and I was sure there was more to it than that.

I decided to go ahead and call the Dept. of Education and find out exactly what I needed. Get this... I only need to renew my license by getting 10 CEUs, which is the equivalent to 4 ONLINE workshops and cost ONLY $65 per workshop and then take the Praxis II. After that, bam, I'm qualified to teach special education! So, not only do we come out about $4,200 cheaper, but I can do my work in my pajamas! This is a huge relief! Now, if I can just get a job at The Little Lighthouse when I'm finished! I know God will provide when His timing is right. He's the reason I'm doing all of this now anyway! On top of that, I got the go ahead on publicizing Pinelake's Parents' Night Out for parents of children with special needs. I typed out an email asking for volunteers for Revive, prayed over it, and then sent it out to everyone I could think of. In a week, I have seven volunteers, which I think is remarkable! Now, I've got to get everything organized for the first night on January 20. Yikes! Once again, God will provide! Candid conversation I have with God a lot on this topic "Alright, God, you got me into this, now HELP!!" I know He will, but I guess I'm just a little nervous. I really want this to be a successful ministry for special needs family in our area. I told Nick the other day that this might be one of the things I will look back on and be the most proud of in my life. Please remember this ministry in your prayers!

We had Barham Christmas this past Sunday with all of Nick's dad's family. It was a bittersweet time since it's the first Christmas without Granny Barham. Nick had to work, so Reece and I attended and had a really good time. We enjoyed visiting with everyone, but I couldn't help but think about Granny Barham. We miss her and think of her often.

Reece and I received a call from my sister, Suzanne today asking us to tag along with her and a friend to Gatlinburg, TN next week. I figured, what the heck! Nick will be headed to the Motor City Bowl, so we might as well do something fun! Reece has never been to the mountains, and I wish it would snow while we are there! We will see!

A couple of Reece's funny quotes this week...

While looking up at Happy Jingle (elf on the shelf), who was perched atop the refrigerator-- "Happy Jingle! That is really impressive!"

Discussing going to the movie today and why it only was going to be the two of us---

Reece: "We could get Granny to go with us.

Me: "Granny is getting well from her surgery."

Reece: "Well, what about that man that lives with Granny?"

Me: "You mean, Papa?"

Reece: "Yeah."

Yep, Christmas Day is going to be a lot of fun with our almost 4 year old! I can't believe he'll be 4 next month! He's really in the spirit this year, so I'm going to soak it all in! He's been my little helper in the kitchen this week, helping to make turtle candy for the neighbors (and maybe a few pieces for us) and mixing up gingerbread dough for the gingerbread men we'll make with Daddy tomorrow night. He's getting excited about opening presents, but I think he totally gets that presents are not what Christmas is all about. I'm trying really hard to instill the true meaning into him. Christmas Eve will be spent at Pinelake's Christmas Eve service with Moni and Daddy Da, and then dinner and presents at our house with them and Granny and Papa. It's become a tradition for us to do Christmas Eve this way, and it gives the grandparents time to really enjoy Reece before the hustle and bustle of Christmas Day.

If I don't post again before Christmas, I hope everyone has an amazing Christmas. It's always bothered me when people would say it's the holiday of giving until I realized that it is. The ultimate gift was given to everyone on that glorious night in a manger. Amongst dirty animals and hay, God presented us with the purest form of love He could ever give us. For that, I am extremely thankful, and I pray that He knows it!

Merry Christmas to you and your family!

With love,

Beth

Prayers for Granny

2011-12-13T20:41:00.000-06:00

Please keep my mother in your prayers on Thursday. She was diagnosed with breast cancer last week and will be undergoing a mastectomy Thursday. It was caught very early, so she is very blessed. As some of you know, we almost lost her a couple of years ago after she developed an infection after double heart bypass surgery. She is extremely nervous, and so are we. Just please pray for her calmness, her body strength, and for an easy recovery with minimal pain.
Our family appreciates your love and prayers.
With love,
Beth

How Was Atlanta? Eh...

2011-12-10T13:44:00.004-06:00

The beginning of a looong concert! But we had fun!

After a Sunday date night with my hubby at the Casting Crowns/ Sanctus Real concert, Reece, Moni, and I left out on Tuesday morning for Atlanta.

Because of the yucky weather, we weren't able to fly with Angel Flight this trip. I must say that they have definitely spoiled us! The 6 hour drive to Atlanta felt twice as long as it used to! Moni (Nick's mom) was kind enough to volunteer making the drive with us. We made it to Atlanta about 7:00 Tuesday night. Reece's first appointment was Wednesday afternoon. It was the spur of the moment orthopedic appointment that I made because of the pain he's been having in his feet. Well, it wasn't as productive as I wanted it to be. They x rayed his feet (see below pics), and of course there was no change. The talus bones are still pointing downward in both feet. I asked Dr. Schmitz about the possibility of the surgery the Rudders had done in Seattle, and his response was "All syndromic kids are like snowflakes. They may look the same, but they all have something that's different." He went on to say that taking the navicular bone out (what they had done) would not do anything to help Reece's feet; it would only give him another scar. He said that while Reece's x ray looks terrible, the outward appearance of his feet looks good. The goal is for a functional foot and not a pretty one. To me, functional would mean no pain without brace support, but he's the one with the doctorate. When I asked, "So, does this mean we just leave the talus vertical forever?" The response was "Yes. Until you begin seeing calluses or blisters, then I don't recommend a further operation." So, I left the appointment not really sure how I felt. Do I want to put Reece through another major surgery on his feet? No. But, do I really want to wait until he inevitably develops calluses or blisters and is in bad pain before we do something? No. So, I called Seattle Children's Hospital to see if Dr. Mosca would just look at Reece's X-rays, but of course you have to schedule an appointment. I just don't see us making the trek from MS to WA anytime soon. So, another thought popped in my head. What if we go back to doctor who started this journey with us- Dr. Craig Robbins here at home? We really liked him, and only left because Shriners wouldn't see us if we were still seeing him, so why not? Now that we don't see Shriners anymore... I immediately called, and Reece has an appointment with him on January 19. If he has nothing new to add, then that's it. We'll just leave Reece's feet as is. It's just all so very frustrating. Someone needs to come up with a new way to correct congenital vertical talus that is actually successful. They do it with clubfeet. Come on... I know there's got to be an orthopedic doctor who is interested in it. Maybe you're reading this?

On to the following day... Thursday morning we headed to see the ENT first. First order of business was to repeat the hearing test and see if the replacement of the ear tubes improved Reece's hearing. Well, I wasn't quite expecting the results we got, but they found that his hearing was actually a little worse in his right ear, and his left ear stayed about the same. Before surgery, the doctor was 99% sure that the hearing loss was due to the non-working tubes. Now, it appears that it's not. They did say that sometimes the actual tube can cause the ear drum not to move just right and cause the loss. I would love to believe this, and I'm sure my family gets tired of me being "negative", but "reality" is conductive hearing loss is a feature of Escobar. The majority of the other Escobar people we know have mild/moderate conductive loss. Some wear aids, others just deal with it other ways. The audiologist's suggestion for us was to just monitor it for now to see if it gets worse. Currently the loss is in the lower pitches and does affect his ability to hear some sounds such as ng, b, n, and a few others. They don't think it's anything that will affect his learning, but did tell us to tell his teacher to make sure his right ear is turned toward instruction since it's the better ear. I went back and looked at his hearing test in 2009, and it does seem that it has stayed the same, so maybe this is as bad as it will get.

The craniofacial appointment was last, and his palate looks great. We got sent off with a return date of a year to a year and a half.

I wasn't quite expecting the information overload I experienced on this trip. The one thing that I keep playing over in my head is what our neurologist said when Reece was a newborn- "The good thing is that multiple pterygium syndrome is not a progressive disorder." I'm really beginning to question that. He's definitely improved in so many areas, but it seems like every time we turn around we're staring something new in the face. Now, we've got hearing, and we're terrified of the respiratory problems that many develop as they get older. I know I sound so negative, but at the same time I get really frustrated when people don't understand that this is not something Reece will just outgrow. This is lifelong for him, and I while I don't want him to be treated differently than others, have a little sympathy for him. While your child may have had ear tubes or walked with his feet turned out, don't assume that Reece's problems are the same as what your child had. I can pretty much guarantee that they are not. Don't disregard the obstacles in his life, but don't compensate by over-emphasizing on him. I'm sorry if this doesn't make any sense. It's really hard to put into words how I feel. I'm tired of putting my child through this. I'm tired of all of these medical decisions being our life. There are days when I just want to take him out of every therapy and cancel every doctor's appointment. But, I can't because I love him way too much, and I don't just love the child Reece, I love the adult Reece too. I just hope and pray that adult Reece will understand just how much I do.

Enough with the venting... who wants a laugh? Here is the latest humor courtesy of the one and only Reece Barham.

Riding in the car, Reece looks up at the sky and sees jet fuel clouds. He says, "Look! There's a cross! Jesus is trying to tell us something!"

So... All of these conversations happened in the car, I just realized...

Reece: "Look at those wrinkled clouds!"

While riding through some fog- "Awww, it's a melted cloud. That makes me sad."

I had to get on to him about something (I know, you're shocked.), and I began telling Happy Jingle (our Elf) what to tell Santa Claus and to tell him to take one of Reece's toys back. Reece replies, "Well, he can't talk back to you, Mama." I responded that he CAN listen! Seriously, do you see why I want to pull my hair out multiple times a day?

And, just yesterday- Reece: "Do I have to take a nap today?"

Me: "Oh, yes. You woke up really early this morning."

Reece: "Well, I was just kinda freaking out."

Me (stifling a laugh): "Why were you freaking out?"

Reece: "I was worrying about something."

Me: "What were you worrying about?"

Reece: "I was just worrying about my movie business."

Hopefully, I leave you with a laugh. I've posted pics below of the X-rays of Reece's feet.

We're in the Christmas baking mood around here. Christmas cookies, divinity, chex mix, truffles, and sausage balls. Fudge is next on my list :)

Xray from above

Left foot- If you look at the bone right below, the leg bone, that is the talus. You can see how it points downward.

Right foot- same scenario, but the talus looks more vertical to me.

With love,

Beth

It's Beginning to Look A Lot Like Christmas!

2011-12-02T10:59:00.000-06:00

Christmas decor is up, shopping is almost complete, and it's getting colder (well, some days). Reece's elf, Happy Jingle, made his appearance a few days ago. Reece immediately told me he wasn't real because he doesn't talk. So, we had to have a talk about believing. You really have to explain things in detail to this child! His questions are endless- "What's inside the grass?" "Why can't we touch the sky?" Even when he's not talking to anyone, he's still talking. I left him at our table at Wendy's last night to go purchase a Frosty, and I could hear him across the restaurant talking to absolutely no one! Yesterday morning, I was beginning to lose my mind and said "Reece! Please be quiet for 5 minutes!". He looks at me and says "Can I talk?". Aaaaaghhhh!!!
So, next week will be a long week in Atlanta with him by myself. We leave Tuesday. I managed to get an appointment with the orthopedic surgeon to address the issues with Reece's feet. That appointment is Wednesday, and then we have surgery follow ups on Thursday. So prayers, please, on Wednesday especially.
We also found out this week that Medicaid denied us both land and pool therapy, which did not surprise me at all. We've decided to just take a break from land, although I'm really sad about not seeing the PT that we've been with for a while :(. However, we're excited to see what kind of gain Reece gets from the pool therapy.
That's all for now. I'll update after the Atlanta trip!
With love,
Beth

Sent from my iPhone

"Never Once"

2011-11-27T14:19:00.004-06:00

When I woke up to a cold, rainy morning, I really was hesitant to get dressed and go to church with Reece by myself this morning. I'm glad that God won the argument and pushed me to go. I don't know if I'm coming down from vacation or what, but the anxiety has once again set in. I think it's because for the past two months Reece has been complaining of his feet hurting. He no longer wants to walk around without his AFOs off because of this. He has always loved his short breaks we give him, but now he just whines and asks me to put the braces back on. He did this last night, and I asked him why. He told me that his feet were hurting again, but that they didn't hurt as bad on the rug. Now, knowing the vertical position the talus is in in both feet, I know it really does have to be painful. My frustration elevated because it's not like we've tried to help his little feet. I mean TWO major surgeries and no correction!!! Of course I start second guessing our decision not to fly out to Seattle to see the ortho there that operated on Haley Rudder's feet. Nick told me a few weeks ago that maybe I was putting my faith in the wrong person- the doctors. And maybe without realizing it, I am. You just never want your kid to be in pain, and it kills me when he says he is. I start questioning whether God was really with us in our decision making, and then I get mad at myself for questioning God. Many times I've asked Nick, "What are we going to do? What's next? What should we do?" Apparently, He must be really hearing my thoughts these days because the sermon this morning was all about having peace even when Satan tries to attack you. My ears were definitely turned on, but then they sang a song during the offering that really just struck me hard. It was like God was speaking directly to me through that song.

After you watch this, I don't think there's any need for me to type any more. I got the point... loud and clear, down to the word "scars". So, once again, I'm trusting that He's with us on this struggle with Reece's sweet little feet. Please join us in prayer for the healing of Reece's feet. We need those bones to shift into the right position so that he won't have all of this pain. If that means another surgery, please pray that God will give us the direction and the surgeon the knowledge he needs.

With love,

Beth

Disneyland 2011!

2011-11-20T12:28:00.012-06:00

We made it home from Disneyland late Friday night. To say that Reece had a blast is quite the understatement! We arrived in Los Angeles about 11:00 a.m. Monday morning. After a 45 minute bus ride to Anaheim, we headed into the Disneyland Hotel. Right off, we were greeted by Goofy! Reece was still half asleep from the nap he took on the bus, but he was happy to see him anyway! My husband, being the Disney freak that he is, practically threw our suitcases into our room, and scooted us out the door into the park. I did have time to check out the headboard that lit up with fireworks and played "A Dream is a Wish..." But, that was about all we had time to check out! Because I took like 200 pictures, I will finish telling our story with pictures. I know that's what you want to see anyway!

Reece's Favorite Ride...It's a Small World. We rode it 3 times. It was decorated for Christmas, thankfully with the catchy song alternated with "Jingle Bells""

We rode Toy Story Mania the night we arrived because Nick had heard that it would be closed the rest of our trip. Not the case, but we had fun anyway!

The cutest of all of Andy's toys!

This is Mickey's Fun Wheel. There was a choice between a swinging cage and a non-swinging cage. My son chose the swinging cage despite my warnings. Well, he absolutely loved swinging back and forth on this thing! I kept my eyes closed the majority of the time. He requested to ride it a second time, and Mama sat that one out. When he and Nick got off, Nick said Reece mocked me the whole time. Yep, I was mocked by my 3 year old.

Here was the first ride (the one I was on). The second ride was at night, which probably was really pretty with all of the lights. As you can tell, Reece is not scared one bit!

Another of Reece's favorites... the Monsters Inc. ride. Once again, Mama was the butt of a joke when my two boys decided that Roz looked "just like Mama."

Nick and Reece in front of the Disneyland Hotel

One of my favorite pictures... He was sitting on Nick's shoulders waiting for the park to open.

Reece's very first roller coaster... The Matterhorn. He barely met the height requirement of 35 inches. Still not so sure he should have been on it since Nick said if he hadn't held him, Reece would have been tossed out. Reece did not cry, but he hollered the whole time "I'm not big enough for this ride!!!!" You can tell in the picture below that Nick is thrilled that he just took his son on his first roller coaster. Reece? Not so much.

So, Reece loves the dark side of Disney. We watched the Star Wars show 3 times and had to purchase a light saber. Reece now goes around pretending he is Darth Vader. Jack Skellington was also there. For those of you who aren't familiar with Jack, he's the main character from The Nightmare before Christmas. Reece loves this movie, but I put a halt on him watching it after he asked me why he couldn't take his head off. It's not a gory movie or anything, but just a little on the dark side. I mean, it is Disney. So, Reece had Daddy go with him the first time to meet Jack. When Jack asked Reece's name, he said "Are you the one who made the little peanut butter cups?" Without batting an eye, Reece looked at him and said, "No. I eat them." There's your dark side! I'm sure "Jack" was really wanting to laugh!

Rapunzel and Flynn Rider from Tangled! We stood in line for almost an hour to have our picture made with them. Because Reece wanted to? No. Because his 28 year old Mama did!

LOVE this picture! Here he is in front of Sleeping Beauty's castle. I must say that Cinderella got a much better deal at Disneyworld. Here castle is a lot bigger than Aurora's!

It's still really pretty lit up at night, though.

And look who else was visiting Disneyland? Santa, and all of his real reindeer were there!

Toon Town in Disneyland is much better than Disneyworld. Lots more details. Here Reece is taking a cruise in Mickey's car.

And, here, he's lounging in Mickey's chair!

Visiting with the mouse himself

Fireman Reece of the Toontown Fire Department

This picture was taken by the Pierce family from Hawaii. We met them while we were waiting in line for the park to open. Because Reece has awesome luck, he and the 4 Pierce boys were specially chosen to help open the park to the rest of the public. We were let through the doors early, introduced to everyone, given special pins, and we began the countdown for the gates to open. Mine and Nick's pins said "Happily Ever After" and Reece's said "Honorary Citizen of Disneyland"

It didn't take Reece long to spend his money after we found the Cars store. Here he is really into Siddley the Spy Jet and the 3 cars he bought for Sid to fly.

Here we are on Flik's Flyers, a fun little ride in A Bug's Land.

One day our child will be embarrassed when his parents take a goofy picture of themselves waiting on the Bug's Life 3-D show. We're some pretty funny looking bugs aren't we?

So, Reece saw Pluto earlier in the hotel. When we found he and Minnie, Reece wanted only to see Minnie because "I already saw Pluto." Unfortunately, our little tyke had to learn that because it was a 2 for 1 deal at this character spot, we had to go through Pluto to get to Minnie. He grinned and bore it :)

Photo op with Mater and Lightning Mcqueen- Reece walks up to them and says "They're not real. They don't talk or move." He wasn't really interested in getting his picture made with these "impostors", but I managed to get a cute one anyway.

We stood in line for Woody, but we got Jessie instead. Oh well, he was happy nonetheless.

Mama's favorite ride- The Little Mermaid, which I've decided might be my favorite Disney movie. I got to ride twice!

"Sha-la-la-la-la-la, come on and kiss the girl!"

Swoon! It's Captain Jack Sparrow!

We ran into Jack AND Sally this time! Reece went up to them by himself, and he was so happy. Again, not sure why he likes them, but oh well...

Look at those monkeys in Casey Jr.'s circus train!

It snowed on Main Street after the fireworks. Really cool effect!

Main Street lit up for Christmas

It's a Small World lit up for Christmas- Pictures can't really show how awesome and beautiful this was!

So, as you can see, we really had a wonderful time. California is a loooong way away, but it was kinda nice to get that far away from home for a while. I didn't get any pictures of the highlight of Reece's trip because I was recording video of it, but he has been waiting to see World of Color for 6 months now. He's watched it countless times on Youtube, and he was finally able to see it up close thanks to Nick's careful planning of buying the World of Color dining package. We were able to eat at Ariel's Grotto and then receive priority seating for the 30 minute water, laser, fire, and projection show. I can't even really describe it, but you can click here to see a little of what we saw. It's not our video, but you'll get the idea.

Reece is now in Carthage for a few days while Nick and I do a little Christmas shopping. Wednesday is Nick's birthday, so we'll do something special for him this week too. Other than that, we'll just be taking it easy around here and enjoying the Thanksgiving holiday. I hope you and your family have a very blessed Thanksgiving!

With love,

Beth

You Put the Light in Me!

2011-11-09T08:12:00.002-06:00

After shedding many tears as the election results rolled in last night, Nick told me that I had become too emotionally involved in Amendment 26. Maybe so. Sometimes I wish I didn't have such strong feelings about things. If you haven't heard by now, MS did not pass it. Now I'm left with very confused feelings about some of my friends and family that I wish I had never had to feel. Things that were said at Reece's birth, and other things I just wish I didn't know. I really thought I was going to have a stomach ulcer after this was all over! There was such a deep divide on this issue, but I have peace that on Judgement Day, my Lord will look back on November 8, 2011 and say "Well done my good and faithful servant." No matter what was said regarding the "vague" "medical" implications, I just COULD NOT stand with people whom I knew were solely voting no just to allow the killing of lives just because that life would have been an inconvenience to them. I just couldn't. All that being said, whatever you voted, I love you still the same!

So, it's a new day. I'll move on, and I'll get over it, I guess. Luckily, I have one pretty special little boy who can brighten my day in a nanosecond! Yesterday, he was singing to the top of his lungs "You put the light in me!!" I just want to squeeze him to pieces sometimes! So precious and so funny! For example, I just got a text from his teacher saying that he told her Disneyland is going to be better than a Thanksgiving party (which he's missing). More examples? While playing outside yesterday, he looked at one of the trees I had staked and said, "Mama! You did a good job! That's very impressive!" The night before last I had cooked red beans and rice, and he watched me cut up the smoked sausage to put in the pot. He commented that the sausage looked like a snake. When we sat down to eat, he took a bite of the sausage and said "MMM... this is good gourmet snake!" I had to keep from choking I laughed so hard! Usually when he says these things, I immediately grab my phone and post it on FB because I'm so afraid I'll forget it when I go to write it down!

He's really, really excited about our upcoming Disneyland trip. I must admit, I'm getting pretty excited too! I'm a little nervous because California seems sooooo far away, but we LOVE to travel and experience different places, so it's going to be a lot of fun.

We go this afternoon for an aquatic therapy evaluation. Reece's land PT gave us the name of a lady at St. Dominic's who works with kiddos in the water, so I called her and got him set up. She says that she sees kids who get both land and water PT and insurance and/or Medicaid will pay for both. Here's hoping they will! That would be wonderful! If they don't, we will probably try aquatic for a while just to give him a different experience. His land PT has begun doing some massage therapy and myofascial release on Reece, and if you've never seen Reece still, just come into one of these sessions. She tried it for the first time last week while I was in the room, and he just froze, completely zombied out! So, obviously, it feels really good!

Mestinon news... we go Friday to follow up with Dr. Veda on this. Both OT and PT have been shocked at the range of motion Reece has gained, particularly in his shoulder flexion and knee flexion. Since August, he has gone from 118 degrees to 140 degrees in shoulder flexion. Knee flexion is tricky. He was born with his knees contracted into flexion, we had surgery to straighten them, and he's worn knee immobilizers at night since then. Up until about 3 months ago, I decided that his straight knees were hindering him some, so we stopped the immobilizers. And, of course, the Mestinon came into play. Now, he's going into a kneeling position while holding onto something, which in turn, gives him another way to get down to the floor by himself. I still plan on putting the immobilizers on every once in a while just to get a good stretch, but I think right now, this is what he needs. I told someone last night, if this drug would just move the bones around in his feet, we'd be doing really good! Don't think that's going to happen though!

Don't let me get off on his feet. I have decided to put a stop to all of my worries and just focus on being thankful for all of the many, many, many blessings God has given me. A wonderful, supportive husband, the most special child ever, a loving church family, and the list goes on.

Right now, Reece's list on our wall includes movies, Daddy, Mama, furniture, and our pets. I love the simplicity of how he thinks! It keeps me in check helps me to think more like a child thinks. I love doing that! Even Reece's devotionals at night make sooo much more sense to me! Love it!

Hope everyone has an awesome weekend, and remember to count your blessings!

With love,

Beth

My Thoughts on Amendment 26

2011-11-07T15:44:00.004-06:00

I don't usually get too involved in politics, but my heart has been burdened by the recent Amendment 26 controversy. To me, it's more of a moral issue than a political one. Maybe it's because I've lost a child due to miscarriage or because I vividly remember the day Nick and I chose Reece's life. We were sitting in the ob/gyn office, and my doctor said, "Legally, I have to ask you this..." Before she finished her sentence, Nick and I were both shaking our heads "no." Killing Reece was not an option. Since Reece's birth, one of our options for having another child is pre-implantation genetic determination, which essentially is in-vitro fertilization, but "discarding" the Escobar affected embryos. Neither of us has ever been comfortable with doing that, so that idea was "discarded" a long time ago.

A lot of the controversy surrounding this amendment is in-vitro, ectopic pregnancies, rape, incest, chemotherapy treatment for the mother, and prosecution for miscarriage. While I can see some of these concerns as legitimate, I also see how absurd some can be. Every law has to have other laws surrounding it. I was so proud to hear someone else say publicly, what I had been thinking all along. Yesterday, our preacher said that just like you have the right to bear arms, you don't have the right to use that to shoot someone. Or, you have the right to free speech, but you can't libel or slander. My point is that we have to start somewhere to eradicate the killing of defenseless babies. To say that a mother will be prosecuted for miscarriage is crazy. Do you hold a hospital accountable if someone dies in the hospital, assuming the hospital has not done something wrong? Of course not! If I were tragically raped, would I choose to have the baby? YES! Because knowing how specific timing for pregnancy has to be, I would know that God created that baby for a specific reason, and plus that baby would be half mine.

In my opinion, you can't be wishy-washy on moral issues. You're either all for something, or all against; there's no in between. I have a lot of friends who are against this amendment, and I understand why. However, I believe that the ACLU and Planned Parenthood have Satan working within them and He is spreading all of these doubts. I mean, the ACLU is the very organization opposed to prayer in schools and taking the Ten Commandments off of government buildings. Google them, it's all on their website. Do I want to be in agreement with them about anything regarding morality? I think not!

So, Mississippians, as you prepare to vote tomorrow, please be in prayer. Our preacher also said this, "When you stand in front of the Ultimate Judge one day, and He knows you had a chance to vote on something like this, what do you want to be able to say to Him? I voted "Yes" or "I had to vote no. It was just too vague." I know what I will say.

I'll probably be attacked about some of the things I've said, and I can't sit here and tell you I have all the answers. However, I've prayed and prayed about this issue, and I know what God is telling me to do. That's how I want to live my life, doing what He tells me and not relying on anyone else.

Just my thoughts, for what it's worth.

With love,

Beth

Psalm 139

¹³ For you created my inmost being;
you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
¹⁵ My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

Boo! Surgery!

2011-11-02T15:56:00.003-05:00

He looks really happy with me doesn't he?

Watching his new movie "Mars Needs Moms"

Can't keep Batman down!

Uncle Cass pushing the Batmobile!

The cast of our Halloween night!

We made it through another one! Reece went in to the OR kicking and screaming on Friday around noon. He's never done that before, and Nick had to pry him off of me. Apparently, the Versed had not kicked in yet. Surgery lasted about an hour. Dr. Sipp went ahead and replaced both ear tubes, even though the right one was fine. Dr. Williams was able to close the remainder of the cleft in his palate. The two surgeons also determined that an adenoidectomy should not affect his speech negatively, so they went ahead and removed those. After the surgery, I asked if his adenoids were really large, and we were told that they were large enough to be affecting his breathing. So, I think it was a good call. We didn't expect to stay overnight in the hospital, but they kept us there to pump him with IV steroids for swelling and preventive antibiotics. Nick and I have no desire for Reece to have to have IV steroids again. Whew, he was quite the force to be reckoned with! We got up the next morning, caught our Angel Flight, and were home by 2:00. Now, he's on a soft food diet for 4 weeks to protect the cleft repair, and no drinking out of straws. I really have to think about mealtimes now! We go back on December 1 for our post op follow up. It was supposed to be sooner, but it was too close to Disneyland and Thanksgiving, so we pushed it back. Luckily, we have our ENT here should Reece have any problems. So far, he's doing great. I honestly think he's sleeping better at night because he's been so much more pleasant and cooperative the last few days. Maybe it's in my head. I don't know, but I'll take it!

I was so excited that he was feeling well enough to go trick or treating Monday night. We tried on his Batman costume that afternoon, and he starts gagging saying that it was choking him. He decided that he "was just going to go trick or treating without it" to which I replied, "Oh, no, mister!" Then, he told me that he would "just wear it on Wednesday." After I finally won the argument he said, "I should have just been Buzz Lightyear." Bless his heart. He did wear his Batman costume the whole night, mask and all, without ever complaining. He looked so stinking cute in it! We went to a neighborhood near Uncle Cass' and Aunt Angie's new house (We're very sad they moved out of our neighborhood.), and he walked around with his sweet cousin Kate. She was so precious because this 9 year old chose to hang back with Reece while the rest of her friends ran from house to house. Although we were a little slower than everyone else, he thoroughly enjoyed himself that night. This was the first year he really understood what the heck we were doing! One of the first houses we went to, the lady tries to put a bag of popcorn in his bucket. He looked up at her and said, "I don't eat popcorn!" Before I could turn too red, she gives him two pieces of candy instead. He looks down into his bucket and says "I need more than THAT!" Apologies by me quickly ensued, and I had a little talk to my son about being thankful for whatever anyone gives you. Yikes!

So, that's our update from this past weekend. As usual, it was a busy one, as this upcoming one will be! Soccer pictures bright and early Saturday morning followed by his next to last game.

With love,

Beth

In a Funk

2011-10-27T20:44:00.001-05:00

>
> Sorry in advance for the downer post. I had to get some stuff off of my chest, and this was the chosen venue. Reece's ?th surgery is in the morning, and for a week now I've been in a funk. I'm just so tired of all of this, you know? And, I can't even imagine how he must feel. He must be so incredibly sick of the hours we've spent in waiting rooms over the past 3 years. These 3 years have changed who I am as a person, and I think some of it is for good, but there are times when I really wish I could be the old happy-go-lucky Beth. I know with adulthood, life gets more serious, but it seems like serious has sucked the fun right out of me. There are days when it's hard to smile because I am so bitter about what I thought my life was going to look like now. Where I pictured 3 children, there is only 1, with there being no discussion of adopting between me and Nick. I know how he feels, and I have to accept and respect that. Don't take me the wrong way. I love Reece with my whole being, but a big part of me wants him to have a sibling to share life with. I just hate that he's stuck with only me and Nick as immediate family for the rest of his life. I watch him play with other kids here at the Ronald McDonald House, and I wonder if he wishes he had another kid at home to play with him and just "do life" with him. Mama has lost her touch in the play realm. I try, but I never feel like it's enough. Like no matter what I do, I'm failing somebody in some way. Kinda sums up the way I feel about parenting in general sometimes. I just feel so disconnected from any other human being besides Reece. If I find myself getting connected to someone, I feel guilty that it's taking time away from him. Probably not good for our marriage, but I don't think I'm the only special needs mother out there that feels this way. Who will Reece have after Nick and I are gone? What if he needs someone to help him? Who will he call "just to chat?" Where else can he get that "sisterly" or "brotherly" love? I really don't have any answers other than prayer and complete faith that my Father will lift me up out of this mess of feelings. I'll be on auto pilot tomorrow as I get Reece through another surgery and try to be the strong, happy Mama and wife that everyone wants to see. I know that "this too shall pass", but I just wish "this" would stop coming around every so often for a visit.
> Please remember Reece in your prayers tomorrow around lunch time. They'll replace the ear tube, close the cleft, and will also look closely at his adenoids. They'll make the decision in the OR regarding whether or not there's enough movement in his palate to remove the adenoids and not affect speech.
> With love,
> Beth
>
> Sent from my iPhone

Not Much to Say...

2011-10-20T21:23:00.005-05:00

I decided I needed to share the pictures I had taken on my phone recently.

Showing off our fall display!

So, I look up from the couch and see this. First instinct is to immediately scold him, then I realize "Wait! He's never done this before! Where's the camera?" Not many Mamas would be proud about their kid jumping on furniture, but this Mama is!

Trying out one of the many "attractions" at the new Flowood park! This place is AMAZING! It also makes me giggle with excitement because of how special needs friendly it is! On the way home, Reece said, " I didn't even fall at that one, Mama."

The future of Flowood Fire Department

First time he let them use the spin toothbrush at the dentist

Not a lot to talk about this week. Just gearing ourselves up emotionally for surgery next week.

Busy Saturday this weekend... Laps for Little Ones, the fundraiser for The Little Lighthouse is Saturday morning. After lunch, I'll head to the GROW conference at our church, while the dudes hang out at home doing the football thing. We head out Wednesday for Atlanta, with surgery on Friday. Please remember Reece in your prayers next week.

With love,

Beth

The Zoo and The Pumpkin Patch

2011-10-14T08:53:00.005-05:00

Saturday was very busy for us. Reece had a soccer game at 9:00 that morning, I had a baby shower to attend for his former OT that afternoon, and that night we celebrated Nanny's (Nick's grandmother's) birthday at Cock of the Walk. We all slept really good that night!

Monday, Reece had the day off of preschool for fall break, so we headed to the Jackson Zoo with our friends Carly, Sarah, and Aubrey. Quite honestly, it's the Jackson Zoo, so I didn't take my camera, but I did find it necessary to record this monkey that Reece and Aubrey were screaming and making faces at. This game of monkey see monkey do went on for a good 5 minutes, and we all got a huge laugh out of it! Watch the monkey closely.

Tuesday night, I attended the informational meeting for the new school Reece will be attending starting next year. Hartfield Academy is the merge between Pinelake Christian School and University Christian School. We are so excited about the educational challenge Reece will receive here. Now, if I can stop worrying about him being able to pull his pants down for the bathroom.

Thursday was the day Reece had been waiting for all week... his pumpkin patch field trip! He had a great time, with his favorite activity being the hay ride. He had one fall in the hay bale maze, and that upset him a bit, but overall he really enjoyed it. Of course, it's always times like these when we are made painfully aware of the difficulty he has in some tasks. I think he also becomes more aware of this too. Last night, at Kindermusik, all of the kids were beating on a drum. I told Reece to go up there and play it with them. He said, "Nu-uh. My hands don't work like that." To say that my heart cracked in a million pieces is an understatement. Nick and I had noticed that he had been watching other children really closely for a while now, but that's the first time he actually verbalized what he had been watching. So, Nick and I are in prayer that God will show us the right words to say to Reece now when these situations come up. We will continue to encourage him to try everything. Heck, yesterday at soccer practice, I thought to myself, "These other parents must think we are nuts putting Reece out on the field." But, we want him to at least try everything. Right now, it's looking like music will be his thing, though. And, Mama not being a sports person, is a-ok with that!

I have some pictures to share, but I wanted to jot down a few of the funny things Reece has been saying. Have you seen the Google commercial where the dad starts an email address for the child so that he can send emails of memories to him? I'm hoping Reece can look back on this blog one day and get that same thing.

I'm in the kitchen getting supper ready. Reece is on the computer determined to find me a Tinkerbell costume (yeah, his idea) Here he comes over into the kitchen, "Mama, Mama. Come help me with this situation!" Nick says children shouldn't be able to says words with more syllables than their age in years.

This morning on the way to school, Reece sneezes. He starts sniffing, and says "I sucked it back up in there. That must have been my adenoids. I don't want those to come out."

Reece at his soccer game with Abigail and Conner

Eating at Cock of the Walk with Kate and Aunt Ang

Watching the ducks in the Reservoir at Cock of the Walk

Our little scarecrow!

Class picture!

Visiting with the turkey!

He's found his pumpkin!

Navigating the hay bale maze

Reece and his sweet teacher, Ms. Amber

Where Have These 2 Weeks Gone???

2011-10-07T08:25:00.004-05:00

They have flown by! I'll try to remember everything we've been up to around here. I'll start with Reece's opthamologist appointment last Tuesday. We go every 6 months just to keep a check on things, and this was the first time Reece actually cooperated for Dr. Milam to get a good vision screening on him. Thankfully, Reece is seeing very well, so as badly as he'd like glasses, he doesn't have to have them right now. Dr. Milam did notice Reece lifting his head up when he tried to look upward. This is caused by his ptosis, or droopy eyelids. Back in March '09, Reece's craniofacial surgeon removed a lot of the extra skin on Reece's eyes. However, both he and Dr. Milam pointed out that within the next year we will probably need to be seen by an ocular plastic surgeon to address the probability that they will need to lift up his eyelid muscle surgically. I haven't even been that worried about it, but since both of them mentioned it without our saying anything, it's looking like we will need to pursue this.

On this same day, I was privileged to be able to share my Christian testimony with our MOMS group at church. I have never spoken in front of so many people, but surprisingly, I was not nervous. The only thing I was worried about was getting through it without crying, which I almost did :) You know, my testimony is really all about how God has displayed his power through Reece. Sometimes I feel as if people may get so tired of me talking about Reece and how our trials with him have changed my life spiritually, and I wonder if I'm really sharing my testimony or Reece's. Then, I begin to think about it, and what could be a greater testimony for yourself than what God has done in your life through your child. His glory is so perfectly revealed through my child's life, that it would be really hard to keep that all to myself. Now, I just want other parents with children with special needs to feel the same way. To know that your child is such a huge part in furthering God's kingdom is a really special gift that we "special" parents have been given. If you don't know Jesus Christ, I can assure you that He knows you and wants to do something AMAZING with your life. All you have to do is believe He is who He says He is and that you are no where close to being as sinless as He was. He'll greet you with open arms!

Thursday, we had our first appointment with Dr. Majure, the new pediatric pulmonologist here at Blair E. Batson Hospital. First of all, we'd never been in the Eli Manning Children's Clinics, and I was immediately impressed with the cleanliness and organization there. So, I was a little apprehensive about meeting a new doctor, as I always am. I'd taken Reece's big 3" binder full of medical records, and I was ready to explain Escobar Syndrome for the umpteenth time. Well, my anxiety was immediately put to ease when Dr. Majure revealed to me that he and Dr. Denney, our beloved pediatrician, were college roommates. I knew, then, that this was going to be a doctor I liked! He graduated UMC, and then practiced at Duke for 24 years where he apparently became a very well-respected pulmonologist there. Now, he's moved back home, and we have been blessed! It's not that we disliked our pulmo. in Atlanta, it's just that here at home, we have the added financial benefit of Medicaid. So, it helps a bit when that's one less doctor we have to pay for out of pocket. Well, I decided to ask him if he'd ever seen anyone with Escobar, and get this, he had! He said that he'd seen a couple of cases many years ago, but he had seen it! Praise God! I was definitely breathing easier after that. So, speaking of breathing, he said that Reece's chest cavity was small, but nothing to worry about right now, just something to monitor. He also agreed that it was hard to know whether what was seen on the last chest X-ray was asthma or the bad case of RSV Reece had back in Feb. He wants us to keep Reece on breathing treatments through the cold/flu season, and we will go back in 3 months to have a lung capacity test performed. That will tell us more. He also told us, regarding the restrictive lung disease that is a feature of Escobar, that it usually is a result of the scoliosis/kyphosis that accompanies the syndrome. Of course, Reece has no signs of either, which is just another act of God. When he was born, his back was extremely curved, but it is completely straight now. You see, scoliosis usually only gets worse with Escobar, not better. It's all God!

Thursday afternoon was Reece's first soccer practice, and he was so excited to have his Moni there to watch him. So, they were practicing running and kicking the ball to the goal, and everyone was cheering Reece on- "Go, Reece, go!" He stops, turns around, and yells, "I'M GOING!!!" His coach just fell out laughing. I think it was at that point Reece won him over. Practice on Thursday, his first game was on Saturday morning. Heeee-lar-ious! I'm so glad that this 3/4 year old league is just for fun, because Reece couldn't care less about it. He was more worried about keeping his sunglasses on and getting out of the way so no one would knock him down. You can kinda see this thinking in the pictures. Granny and Papa were there to cheer him on, and it was great entertainment for them!

Last weekend, I got to spend the weekend with one of my most favorite people- Suzanne Rudder. Suzanne is the mother to Colin, Haley, and Mason- the latter two with Escobar syndrome. If you've been reading for a while, you know Miss Haley, Reece's girlfriend from the convention. These two are so similar in personality that it's ridiculous. Anyway, Suzanne and I headed to Meridian after the soccer game Saturday, ate lunch, shopped, and then were able to worship together at the Jeremy Camp concert. This may sound cheesy, but being able to worship God with the mother of children who has the exact same rare genetic syndrome as your child is truly a special experience. I am so absolutely blessed to know her, and we had the best time laughing and talking about our kids, the trials and triumphs, and giving each other advice. The Tuesday night after she left on Sunday, we hooked our kids up on Skype, and it was so neat. Ok, so it was a lot of silly 3 year old and 5 year old talk, but I loved all 30 minutes of it. The next day, Reece was begging to Skype with Haley and Mason again. So cool that they are forming this relationship that will hopefully last a lifetime.

Suzanne and I at the concert

Skyping with Haley and Mason

This week has been a little slower. We are trying to just chill and take it easy this week. Nick is off for a few days, so we are enjoying time as a family. Last night, Nick told Reece "I love you." Reece: "I love you too." Nick: "I love you more!" Reece: "I love you more too!" Our conversations with him these days are so precious, and I'm trying to soak them all in. In the ladies' Bible study I'm in on Tuesday mornings, we talked about this very thing... soaking in moments with your children. In a sense, I feel a little luckier than most mothers because of what Reece has been through, it has taught me how to cherish moments more often. Sure, there are times when I get busy with housework or paying the bills, but for the most part I try to sit down and do things with Reece. A lot of times it may just be getting out of the house together because we can grind on each other's nerves staying cooped up, but we are always together. I love that about my life. I am so blessed to have a husband who works so hard for us so that I can stay home with Reece. Of course, that may change after Reece starts kindergarten, but I've been able to be with him through these early years.

Well, I'll sign off now. We are awaiting the arrival of Reece's new OKO Tricycle to try out. UPS is supposed to deliver it today, and I'm so eager to get him on it! We decided against the adaptive trike just because he doesn't need a whole lot of adaptations. I'll post some pics of him on it soon!

With love,

Beth

Yes, I'm Bragging!

2011-09-28T16:18:00.001-05:00

3 1/2 and Growing!

2011-09-26T08:33:00.003-05:00

This boy loves playing in the water!

Spaghetti lunch with his pals!

Reece's throne

This past week went by crazy fast! Maybe that's why I'm feeling under the weather and able to actually sit down to update the blog!

As you can see from the picture, Reece's new stroller chair came in. At first, he pouted because he "wanted a wheelchair", but now he's ok with calling it a stroller chair. He sits up in the thing like he's the king of England, so apparently it's pretty comfy. We are trying to only use it for long distance situations. He only takes it to preschool on Fridays when he has P.E. and has to walk a long way to the gym. Other than that, we use it for long shopping trips or long walks into a building. When I'm by myself, it's just too hard to carry him because he's more than half of my height now! So, I'm really glad we got it, although I still feel a little odd when someone asks why he needs a wheelchair or gives us that "aww" look. I want to scream at strangers "It's ok! He can walk, but he just gets tired quickly. But, for now, I'll just smile and walk on.

Reece is still on the Mestinon three times a day. We go up to the max dose this Friday. Still really only seeing improvement in speech, facial muscles, and his stance is not as crouched. No negative side effects, so we are going to stick with it. My hope is for it to prevent any serious lung capacity issues. Speaking of which, we see the new pulmonologist here at UMC this Thursday. Keep Reece in prayer, and this doctor. I so want him to have educated himself on Escobar syndrome before the appointment so that he is aware of the respiratory issues that can occur. Just pray that he is good enough to actually do his homework.

Reece had a play date last Friday here at the house. Three of his friends (and a baby sister) came over for a spaghetti lunch and lots of playing! They had so much fun, and we parents loved watching them interact now that they have conversations with each other! It's so funny!

Yesterday, we celebrated Granny's (my mother) 70th birthday. Reece gets so excited about birthday parties. He can hardly stand it. We all gathered at Aunt Suzanne and Uncle Byrd's house, and Reece was adamant that he was spending the night. After lots of arguing and me finally threatening a spanking, he informed me that "he was so upset with me right now." Yep, a lot of the "I-think-I'm-a-grownup-and-can-talk-to-you-like-you-talk-to-me" talking is going on now. From "When I tell you to do something, Mama, you're supposed to say yes." to "These are my keys. I'm the only one that can drive." Someone please tell me that age 4 gets easier!

You know, I've realized here lately that most of this last year I have really only talked like Reece grinds on my last nerve. And, yes, there are some days that he does. But, then there are those days when I'm feeling down and he says, "What are you worried about Mama?" or "I'm getting so big! I can do it all by myself!". The truth is that I love this little boy with my whole being. There are times I want to just hold him all day and love on him, but of course he's getting much too old for that now, Mom! But, he is my entire life. Every thought, every action, every prayer I have is for him, and I hope that one day he will look back and realize just how much his Mama loves him. I wish I could remember all of the things he says, good and bad, but he says so much in one day that I need a tape recorder. I mean, he says A LOT! In fact, even when he's not talking directly to you, he's still talking. It may be to one of his imaginary friends, the dogs, or just himself, but that mouth is always going. Literally, the only time he is quiet is when he's asleep. My ears go into a bit of shock when that happens! But, you know, I'm extremely grateful for that voice. Especially being around those children who have yet to find theirs. He can tell me what he wants, how he feels, etc. Thank God for that blessing.

This weekend I get to hang out with one of my most favorite ladies (and possible future in-law). Suzanne Rudder is coming down for the weekend, and several of us are going to the Jeremy Camp/Francesca Battistelli concert in Meridian. Ha ha... I say future in-law because out of the blue the other morning, Reece starts telling us about his and Haley's wedding. Another time I wish I had a tape recorder, but I can remember that he will be wearing a blue wedding dress and Haley will be wearing a green wedding dress. And, they are not going on a honeymoon, but are going to stay at a Comfort Suites hotel. I mean, the child has it all planned out!

My girls' trip to the beach was an absolute blast! We did exactly what we wanted to do the whole weekend. Although we got freaked out the first night we went out and were looking seashells and a flying fish nearly scared us to death. It must have been a funny sight to see 3 women, one of whom is pregnant, hightailing it back up to the dry sand! After 4 hours on the beach Saturday, we were regretting it Saturday night because we were all scorched. And, no, we didn't use sunscreen. Yes, that was dumb!

Reece has his first soccer practice and game this week. We went to the kick off party last week to meet his coach and team, get his uniform, and hear the rules. Ok... so I'm a little nervous. First of all, I don't "get" the whole sports hoopla, and while this is supposed to be fun, I could see the other parents looking at Reece wondering what he was doing there. And, while they assured me that it was all very laid back, part of me couldn't help but feel a little nervous. We chose to sign Reece up because I don't know if he'll ever really be able to play sports, so might as well do it while it's all for fun. I just know he's going to fall, and I hope he doesn't get embarrassed when Mama has to run out and pick him up. I'll be sure to post pictures and let you know how it goes.

I think that pretty much covers everything. I'm posting links to a couple of videos. One is Reece using the practice chopsticks at P.F. Chang's last week. We were so impressed with how well he did. And the other is of he and two of his friends breaking it down to Justin Bieber.

Have a great week!

With love,

Beth

http://youtu.be/7Kk10_VXA80

http://youtu.be/zXE4nFC3Yt8

Rolling Right Along

2011-09-15T08:16:00.002-05:00

Things have entered somewhat of a routine around here again. We are settling into a new schedule that includes my Monday/Wednesday volunteer days at The Little Lighthouse. I have my first week under my belt, and I have already learned so much. What I am amazed by is how often God reminds me throughout the day how special these children are to Him. There are points when I hear God's voice whisper to me "These are My children." And they are... you can truly feel the light these children put off for the Lord. I say all of these things like I don't have one of these children myself! It's just so fascinating to me how differently God gives a unique special touch to each child.

I'd be lying to say that I'm not exhausted by the end of the day, and I'm only there 2 days! But, it's all so rewarding. That first day I was really hearing Satan's voice- "You can't do this. You're crazy. You have no idea what you are doing. You're giving up time with your own child for this? You're being a terrible mother." And the negative conversation in my head had me in tears most of the day. I started second guessing my decision to enter this new chapter. Then, yesterday, all it took was an unexpected hug from one of these children, a sleeping baby snuggled under my chin, and a bright smile from a precious face to make me hear God say "Yes you can do this! You're doing it for Me, and I will be with you every step of the way!" Then, first thing this morning I wake up to check my Twitter feed and find this verse as Klove's first tweet- "For God is working in you, giving you the desire and the power to do what pleases him." Philipians 2:13

Think that was directed toward me?

Now to talk about the whole reason my life is what it is... my sweet little man, Reece. Since my last post, we have seen the geneticist and the neurologist. The geneticist appointment was pretty much a "catch up" appointment. However, we did learn that UMC has hired a new pediatric pulmonologist from Duke, supposedly very esteemed. Now, you're thinking, "doesn't Reece already see a ped. pulmo. in Atlanta?" Yes, he does. And, although, we like him ok, we would really like for someone to give us a second opinion (you know we're all about second, third, fifteenth opinions). If we could find someone really good here at home, (where Reece has Medicaid coverage), that'd be great. So, the geneticist referred us over, and we have an appointment on September 29.

The appointment with the neurologist was a follow up for the Mestinon. Reece has been doing well on the medication, showing improvement in the clarity of his speech and his crouched stance. Not only that, he has started doing steps without holding on to anything (see video), using the side of the bathtub to pull himself to standing, jumping, and walking up ramps more easily. Because he hasn't experienced any side effects, Dr. Veda bumped his dose up to 1.5 mL 3 times a day for 3 weeks. If he doesn't have any stomach upset or muscle cramps, we go to the max dose of 2 mL 3 times a day. So, we just watch him every day seeing what new things he can do!

To help him in increasing his strength, we are applying for an adapted tricycle for him. Turns out there is an organization that will purchase Amtryke trikes for children with special needs. We're thankful for this since these things are super expensive! We're in the process of getting the application together.

We have also scheduled Reece's next surgery. On October 28, he'll have the surgery to replace the left ear tube and repair the small cleft left in his palate. We're hoping recovery is very quick, so he can be home feeling well for trick or treating. He doesn't know about this surgery yet, as we are having to be more careful about what we tell him. He is a really deep thinker and has started to really worry about certain things, so we're trying to watch what we say in front of him.

He's doing well in school. His teacher said that she is having trouble getting him to stay in his seat. Imagine that! At home, I've started working with him on reading sight words. I ordered some sight word books, and we've been amazed at how quickly he has picked up on them! And he will actually sit down and work with me! That's amazing to me!

So, that's what going on around the Barham household. Daddy is learning how to be a "carpool dad" on Wednesdays while I'm at LLH. He's doing a great job and has been so supportive of what I'm doing. So blessed to have such a sweet husband who backs me no matter what! Love him!

I hope everyone has a great weekend! I'm off for a girls' beach trip, Nick's off for a guys' roller coaster riding trip, and Reece is off for a Moni and Daddy Da trip!

With love,

Beth

Reece climbing the garage steps.

http://youtu.be/y1q0E8fJk-c

Reece singing "Dynamite" in the Seaside cottage.

http://youtu.be/iy-_31EfP9A

Our 1st Seaside Vacation

2011-09-05T14:05:00.007-05:00

Nick, who doesn't care for beach vacations, has said that we can go back to Seaside, FL anytime I would like! Yay! I think we have found our family's yearly beach getaway! It was everything we needed it to be. We took each day slowly, with no planned agenda, and enjoyed every minute of it. Reece loved it too, however, he wasn't a fan of actually being ON the beach, after the ocean swept his beloved orange seashell away. He was quite miffed and didn't care to have anything else to do with that thief of an ocean! We rented bicycles, with a trailer for Reece, and had a blast just cruising through the quaint little town. The first day we got our bicycles, Reece squealed loudly around the town center. While the bicycles certainly delighted him, the highlight of his week was the night everyone gathered in a common grassy area to watch Toy Story 3 projected onto the side of a building. He was in heaven!

I won't type a long post, but instead, I will let the pictures tell the story of our first Seaside vacation. I do have to type one thing, though. The last night there, Nick was laying on the couch, I had my head in his lap, and Reece was curled up next to us. I started talking to Reece about the special memories we had made and how I hoped he would always remember the great time we had. I told him I wanted him to remember the bike rides, the open air movie, but most importantly the fact that we were just able to chill. I said, "We never get to just chill." Reece's response? "That's the truf!"

Enjoy the pictures!

Welcome to Seaside!

So thankful for the sweet lady who took this pic of our family!

Waiting for it to get dark for the movie!

Watching Toy Story 3!

Reece liked to watch the ocean.

A Big Cheeeeese!

We surprised Reece by meeting up with his friend Landrum and her family!

They invited us for lunch after swimming!

So sweet

My two boys

Ok... I'm done with the photo shoot, Mama!

A serious pic

These two can't be serious for long!

Screaming into the ocean breeze!

Such a quaint little beach town :)

Me and my sweet baby boy

He's getting so big!

Another big cheeeese!

Looking out at the ocean!

Shooting water high up into the air with Daddy!

Two cool dudes!

He insists that the sunglasses help him to stay cool.

Trying to convince Reece that the ocean is ok

Before the great beach meltdown of 2011

Information Overload from Atlanta

2011-08-27T12:17:00.002-05:00

What a week! We started off with a bang on Monday when Reece became nauseated on the plane ride and let it all out in the middle of Publix Grocery. Yeah, that was so much fun.

Tuesday morning we had the MRI on his elbows. We got there at 11:00 and left at 5:30 that afternoon. It ended up being more involved than I thought it would be. He was sedated, and that required an IV. First try yielded a blown vein. Luckily, it only took one more stick to get it in. We finally went back to the scanner at 2:30. I have never been back with Reece when he goes to sleep, and I can firmly say that I don't care to ever do that again! Feeling his little body go limp and then watching him wave his little arm and say "Maaama!" took a serious emotional toll on me. I went back to the room and cried hysterically. Like I said, no desire to do that again. After 2 hours in the scan and 1 hour waking up, he popped up ready to go.

Because we had 6 appointments, I could detail each and every day, but instead I'll just provide the high points from each one.

Wednesday

Dr. Peljovich (upper extremities): MRI on Reece's elbows showed that there were no arteries or nerves involved in his skin webbing, meaning that should we choose, we can have that surgically removed using a Z-plasty procedure. Considerations for this surgery include that the degree of correction that we would gain in his elbows is uncertain due to the fact that his fused elbow bones will always limit him. No way to know how much range he would gain from removing the extra skin. We also have to consider that his elbow muscles are getting tight. Should we choose to remove the skin, we could also lose some strength in those muscles, which may or may not be a good thing. Dr. P would operate on Reece's right elbow first, see if he gets desirable results, and then proceed with the left. We have not made a decision on this. Nick and I have decided to put this on the back burner for now and see if he gains anything by being on the Mestinon.

Dr. Schmitz (lower extremities): This was a shocker, and I left feeling sick to my stomach. They performed weight bearing X-rays on Reece's feet. Dr. S came in, asked me how Reece's feet were doing, and then informed me that his feet were insufficiently corrected. Because I could not believe what I was hearing, I asked him to show me the X-rays. Sure enough, Reece's bones looked as if they had never been operated on. Keep in mind, they have...TWICE! Dr. S assured me that his feet look better on the outside than the inside and that is what you want. I'm just going to take his word for that because I don't see how in the world that could be true. Are we looking at a 3rd surgery? Not anytime soon. He wants to see how much we can get with bracing before anything else is done. This also goes for the rotation in Reece's right leg. There is a procedure that a doctor at the convention gave me the name of that would guide the growth in Reece's tibia to turn that leg back in. Dr. S says that he does not advise this procedure on a 3 year old. Again, he wants to wait until Reece is older and we see how the bracing does. If it continues to get worse, then he will go ahead and perform this operation. I suspect this will be done in the next couple of years because I'm only watching his leg turn outwards more and more.

Thursday

Dr. Riski (speech pathologist): After having Reece speak into a machine to test his nasality, Dr. Riski said that Reece's speech problems are not bad at all. He does have some hypernasality, and he recommended that the small cleft left in Reece's soft palate should be fixed to correct this. However, he said he didn't want it to be done as a separate operation, only performed when Reece is under for some other minor procedure. He also reiterated that Reeces palate is long enough to withstand an adenoidectomy should the steroid spray not shrink his adenoids. While we were there, I mentioned to him that Escobar syndrome carries a risk for hearing loss. I asked that he test it. So, he placed a little machine in Reece's ear to test the movement of his ear drum. The right reading came out at 2.3, which he said was normal. The left ear reading came out at 0.6. Now, I don't really understand what these numbers mean, but I knew that 0.6 was low if 2.3 was normal. He tested again and got the same results. He printed them out and told me to talk with the ENT that afternoon. Yes, Nick and I were a little frantic, but thankful that Reece had the ENT appointment that afternoon.

Dr. Kirchner (pulmonologist): Relatively simple appointment... Keep him on his preventive asthma medication, and he will repeat a chest X-ray in 6 months to check the growth of Reece's chest cavity. We also discussed the great adenoid debate, and he said that there was not an urgent need to have them removed at this point, especially if we had noticed improvement in snoring while using the steroid spray, which we have.

Dr. Williams (craniofacial/plastic): He agreed with Dr. P about the skin webbing. He also said that the skin is not the major cause of Reece's elbow restriction. We talked about the cleft palate issue, he examined Reece and said that it would take just a tiny bit to close the rest of that cleft up. He agreed with Riski about not going into the OR just for that. Then, he informed me that Reece may need further surgery on his eyelids in the future. This was not even a question I asked, he just offered it up. He said that we need to watch him to make sure he's not lifting his head in order to look up. Reece had some skin removed on his eyelids back in March of '09. Dr. W said that the future surgery would involve going in and lifting up some of the muscle. He would refer us to an ocular plastic surgeon for this. Again, just something for us to watch. Keeping our fingers crossed that the Mestinon could correct this too!

Dr. Sipp (ENT): I was anxious for this appointment because of the hearing test. Dr. Sipp looked in Reece's ears and said that he needed to clean out the left one because there was so much wax. He thought that might be why Reece's hearing was affected. So, a nurse and I held Reece down while Dr. S pulled wax out of Reece's ear. It was really neat because he did it using a camera, so I was able to see down in Reece's ear. After he pulled the wax out, he started poking at the tube in Reece's ear. He finished up, and I asked him, "So was the wax causing the hearing problem?" He said, "Well, I don't think his tube is functioning any more." He asked if I minded going ahead and doing a full blown hearing test there in the office, and of course, I wanted him to. Reece actually cooperated for the 45 minute test, and he scored below normal on that left ear again. The audiologist said that Reece's eardrum was retracted. Apparently, his left ear feels like it needs to pop, like when you're on an airplane. That has to be so aggravating! I asked her if a retracted eardrum meant his tube was not working, and she told me that was usually the case. The nerve test (which I don't even know what part of the test that was) showed that he's capable of hearing clearly in that left ear. We went back into the room and talked with Dr. Sipp. He said that he wanted to replace that tube sooner rather than later to avoid stretching of the ear drum. I also asked him whether Reece showed any signs of having extra cartilage or bony deformities in his ear (like some of the other Escobar kids), and he said that Reece was not showing any evidence of that.

Nick and I have made the decision to go ahead and have the ear tube replaced and the cleft palate repaired at the same time. We are shooting for the first of December, but we don't have a definite date yet. We really didn't want to have Reece go through another surgery this year, but the ear tube needs to be replaced to prevent any damage. We just thought we were done with surgeries! We are very torn about the elbow surgery. This is the only optional surgery that we've been faced with. In talking with another adult Escobar patient, she says that removing her elbow webbing would increase her range of motion, but of course she doesn't have the fused radius/ulna. We just don't want it to get so tight as he grows that it further restricts his elbow extension. Those elbows already limit so much! It's something we will just have to pray hard about and trust that God will guide us in making the right decision, not just for 3 year old Reece, but also for adult Reece.

As much as we go through, there are so many families who have it so much worse. We stayed at the Ronald McDonald House with two families who had been in car accidents. One mother lost a son and has son in the hospital with brain damage. Another family was hit by a fleeing 16 year old going 80 mph. Their 6 year old daughter was killed, 3 year old son is a quadriplegic, 10 year old daughter with broken leg, and 8 year old daughter with a broken leg. The mother was also 20 weeks pregnant at the time of the accident. That baby miraculously survived. Two 8 year old boys were there as victims of tragic accidents, one having a tree fall on him while swimming in a creek and one having a trailer door fall down on the back of his head. Both of them are now in a wheelchair and are having to relearn how to talk and walk. Just normal children, with terrible things brought upon them. I'd be lying to say that I didn't stay a little down when we were around these families. Sadness just overwhelmed me, and I felt so lucky to have Reece just the way he is. Sure, our lives aren't exactly all fun and games, but at least he's alive and not faced with the frustration of learning how to do things that used to be so normal for him. In some ways, Reece not knowing what he can't do is a blessing.

So, we are back for a few days of our normal routine until we leave for Seaside, FL on Wednesday!!! I am beyond excited and, after last week, in need of some serious relaxation! I will be soaking up every minute of it!

With love,

Beth

Headed Out to Atlanta

2011-08-20T15:02:00.002-05:00

Reece and I will catch our Angel Flight at 8:00 this Monday morning to head out for a long week in Atlanta. Poor Nick has to work because we're going on a FUN family vacation to Seaside, FL the next week! Our medical visits begin Tuesday at 12 when Reece will have his MRI on his elbows to check on the blood vessels and nerves in the webbing. Wednesday morning we have our orthopedic appointments with upper extremities (to discuss the MRI results) and lower extremities (for X-ray on feet and to address the rotation in Reece's right leg). Then, Thursday is the fun 4 appointment day. We will see the speech pathologist, craniofacial surgeon, pulmonologist, and ENT. Reece should be in a great mood by the end of Thursday!

In other news, Reece stayed overnight at Batson for the Mestinon drug trial. Things went a little differently than expected. Instead of doing the EMG as planned, they had to insert an iv and performed a Tensilon test. Tensilon is the fast acting version of Mestinon, so the hope was to be able to see immediate results. Of course, Reece was highly ticked, so we really couldn't tell anything. The good news is that there were no negative side effects, so we are going ahead and keeping him on it. So far, he has had 3 full doses outside of the hospital. Last night, he stood up in the bathtub by pulling up on the side and then sat back down. He's never done that before. And, we have noticed his speech is not as slurred. I'm sure we will constantly be asking ourselves "Is this from the medicine or not?" But, Nick and I had both noticed the speech improvement on our own without discussing it, so that may really be the Mestinon. Only time will tell. He is only on it twice a day this week, and then we move up to three times a day next week. It's so weird in looking back because it was almost 3 years ago to the day that I was posting on here about our first experience with Mestinon. This one seems to be going more like it should!

I will keep everyone updated on how he's doing on the drug as well as what we learn in Atlanta.

Pray for safe travels for me and the little boss!

With love,

Beth

First Day of Pre-K

2011-08-12T09:46:00.003-05:00

Complete with his new pirate backpack, Reece headed off for his first day of preschool at Pinelake. He'll be there 3 days a week, and as you can tell he's pretty proud of himself! I must admit that I have been a nervous wreck. I have been so worried that he would get down and become frustrated because he couldn't keep up with his peers. Well, when we picked him up on Wednesday, he said that he and Zachary got in trouble for running. I said, "You? Got in trouble for running?" It took me a minute to process it, but when I did, I was bursting with pride! Only a "special" mother would understand that joy I felt from knowing that my child had gotten in trouble for RUNNING! Of course, I didn't tell Reece this :) On his first day, he also got a sticker because "Mrs. Amber said she'd give me one if I be quiet." Now, THAT I don't have a hard time believing!

So, obviously, he's not having a hard time adjusting to the pre-k life. He did get highly upset because after we discussed that he needed to listen for his carpool number when I go to pick him up, they did not say "Reece Barham, number 1." Ok, so maybe I should wait until I know exactly how things are done before I explain them to him.

He's still cracking us up every day. I can't even keep up with the things he says to remember to write them down. I just try to cherish each moment. The moments that he is as stubborn as a mule- I'm trying to block those out! He knows how to count to 20, only getting a couple of the numbers mixed up. He has also learned how to write the letter R. He's known all of his colors since he was like a year old, so we don't have to worry much about that. Oh, and if it's electronic, he can run it. You know what he wants Santa to bring him? An iPad... a new one. Oh, and an iPod touch. "I want both of them." He is so Nick Barham's child. Whatever happened to playing with trains or PRETENDING?! So, my day is usually spent trying to think of some way to lure him away from technology to just sit down and play! Most days I'm not very successful. I have incorporated "homework" into this new preschool thing, just so I can actually get him to sit down and do something productive. It takes 5 minutes for him to complete a little worksheet, but it makes me feel better!

This Wednesday we go in for his Mestinon trial. I really hope this benefits him. It seems like the older he is getting, the more quickly he tires out. We'll go in at 9 Wednesday morning, Dr. Veda will perform a nerve conduction study, and then Reece will take his first dose of the medicine. They'll monitor him overnight for excess secretions and other negative side effects, and we should be able to see results fairly quickly.

In other news, I have finally decided on what to do with my "spare time." Ha! A few weeks ago, I was told about a teaching position that was open at The Little Lighthouse. For those of you who aren't familiar with it, LLH is a preschool for children with special needs. They serve a lot of children with Down syndrome but many others as well, primarily those with cognitive and developmental delays. They have school Monday -Thursday until 1:30. Knowing the answer to the question, I called about the job and learned that it required a special education degree. Not only that, it had been filled 3 days prior. So, it got me to thinking. I know several of these children from Reece's therapy clinic, and I have always just felt such joy around them. Maybe I should pursue this. My first step was to contact the director again and find out about becoming a volunteer there maybe once or twice a week. I meet with her this Monday afternoon to learn more. Then, I began researching what I would need to do to obtain special education licensure. Ideally, I wanted to be able to do it all online, but after emailing the University of Southern Miss, their online program seemed a little more complicated than MC's option. Mississippi College, where I got my bachelors, only requires 4 classes to become certified to teach special education. While I'll have to spread it out over 4 semesters since they are offered on a rotating basis and drive 45 minutes each way at night, it seems more doable. Especially since USM's program requires 300 contact hours in a classroom. I don't think that would be possible for me. Soooo... I'm getting things together to apply for the spring class.

I feel 150% nuts for adding this to my already hectic life. It seems as if God just keeps pushing me further and further into the special needs world. It's what's familiar to me I guess. I do want to stick with the younger children because I already know that I am not comfortable working with the older ones. I've learned that through our special needs ministry. I've already had so many people tell me that this is perfect for me. I've been so overwhelmed with the support people have already shown me. I am my biggest critic, and Nick says that I never believe I am good at anything. Unfortunately, he's right. I am very tough on myself and have a fear of failure. For people to encourage me and tell me that this is a "perfect fit" for me, it gives me a little more confidence. Maybe they see something that I don't.

I can honestly say that when I went to get my degree in education I did not want any part of the special sector. It terrified me. Now, being in a "typical" classroom terrifies me! Funny how God prepares you for the journey HE wants you to be on. So, while I feel certifiably insane for doing this, I'm just trusting His urge. Lucky for me, He knows exactly what is coming! That's the best part about serving Him!

With love,

Beth

Dear All Human Beings,

2011-08-10T10:31:00.002-05:00

This was copied from another "special" mom's blog. I liked it, so I decided to share.

To Whom it May Concern,

I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children. Take the time to know us.

Gearing Up!

2011-07-29T13:46:00.003-05:00

Things are about to pick back up around here! Reece starts preschool in a week and a half, and my man's going to have extracurricular activities this fall! We've signed him up for soccer at the YMCA and also Kindermusik. He really enjoyed his summer Kindermusik camp and has asked me every day if "Kindermusik is back open yet?"

August is going to go by so fast! Starting next week, he'll have his therapies on Tuesdays. Then, we go in on the 17th for the Mestinon trial at Blair E. Batson. That next week, Reece and I will head back to Atlanta either on Monday or Tuesday for 6 doctors' appointments and a MRI. The MRI will be checking the skin webbing on the inside of his elbows to see if nerves or tendons are involved. If they are, then there's nothing they can do to keep those from getting really tight as he grows. If there are not any involved, we may be looking into a plastic surgery to remove some of the extra skin. We'll also be exploring the possibility of an adenoidectomy again. Some of the speech therapists at Reece's therapy clinic have expressed some concern about the nasal tone to Reece's voice. If you remember not too long ago, we had conflicting opinions about the adenoids. The pulmonologist wanted them out to help with the apnea, the speech pathologist said that it would be ok for Reece to have his adenoids out even with his slight cleft palate although adenoids are not usually removed when a cleft is involved, and two ENTs did not want to take them out. Sooooo.... we are going back to reevaluate everything! The speech therapist told me that Reece's language and vocabulary is so out of this world, that they don't want people misunderstanding the intelligent things that he says. At the speech pathologist's suggestion, we scheduled that 6th appointment to see Dr. Sipp, the ENT in Atlanta, again on this trip. Geez... things can get so confusing sometimes!

On top of all of this, we have decided to look into getting Reece a stroller wheelchair to help him with long distances. We meet with his physical therapist and equipment specialist next week to have him measured and get the process started. I first saw one of these at the convention. One of our new Escobar friends has one, and it seemed like a great thing. She just hopped in it when she had to walk a long way or when she became tired. It's not as "medical" as a wheelchair and not as babyish as a stroller. This Reece can take with him to school and be able to keep up with his friends when they are going between places and when they go on field trips. Now, we just keep our fingers crossed that insurance will pay. You wouldn't believe how pricey these are!

You can see a pic if you click here.

In other news, I'm still on the lookout for a part time job. It's not like I don't have plenty to keep me busy, it's just that none of it is for myself. I'm working hard trying to organize our special needs ministry more, and I feel God is behind this 100%. I don't know if that's my "thing" or if there is something else. There have been several things placed before me, but I haven't really had clarification about what exactly I need to do. I'm just steadily praying and trusting that He'll have me with my hands in whatever it needs to be! Sometimes I feel so overwhelmed by responsibilities and pressure that I put on myself that I know what people mean when they say they feel like they are drowning. Poor Nick is always having to pull me out of the pool of frustration that I so easily jump in to.

You know, I went in to get one of those sweet sleeping kisses from Reece last night, and I could feel my heart literally swell with love for this little guy. My whole life is devoted to him. My day is spent trying to think of ways to make his life easier for him and then bumming out when I can't figure out some way to fix it. I know that it's not healthy, but he's my baby, and I cannot "not" do everything in my power to help him. It will just always be that way, no matter what. Even if he's driving me absolutely insane with his 3 year old personality :)

So, there's my post. I've added our crazy appointment schedule to the list on the side. If you pray for Reece, please pray that 1. We are able to get this stroller wheelchair for him 2. The Mestinon increases Reece's endurance and muscle strength and 3. We find a solution for the limitations his elbows cause him.

With love,

Beth

So, What's New?

2011-07-19T14:05:00.003-05:00

Here lately I have found myself with an extreme case of dissatisfaction. I don't know if it's depression coming off of the heels of the AMC convention, or what, but I want it to stop! It all started with a desire for more children after being around so many families with more than one child. It's so frustrating because it's just not that simple. Our options are: 1. Chance it and risk having a child with a more severe case of Escobar than Reece or 2. Adopt.

It's looking like neither one of those options will ever come to fruition because Nick and I have differing opinions on them. So, for now, I push those feelings way back and try to find something to prevent them from rearing their ugly head again. Thinking that something could be a part time job, I've been on the look-out for something I could do yet still have the flexibility to take Reece to therapies and appointments. I thought about going back into teaching since I discovered a kindergarten position at the private school Reece will eventually be attending. Do I really want to go back to teaching? No. I felt overwhelmed when I was teaching back before Reece. So, Nick suggests that I start working at home for a travel agency that promotes all things Disney. His dream job perhaps, but it doesn't sound like something I'm confident in yet alone enjoy. What do I really want to do? I really would like to work in children's library services. I love children's literature and all things surrounding the topic. I've been checking our regional library system's job postings, and it just so happens that there is a children's specialist job opening available... an hour away. It is part time, 20-30 hours a week, so I feel like I could do it. The downfall is the hour drive each way. At the same time, I would love to have something that is mine. Three and half years of eating, sleeping, breathing therapy, medical research, doctors' appointments, etc is wearing on me. I need an outlet. I know I said this about a year and a half ago and started selling Discovery Toys, which didn't work out either. Turns out I'm not a very good saleswoman, and I'm ok with that. We could certainly use the extra money, even if it's a small amount. Nick needs a new car, and I'd love to start on our dream home. I just am at a crossroads, and not quite sure what to do. I've definitely prayed about it and will do whatever God leads me to do. I just wish he'd let me know what it is already! I've been waiting on either a phone call or an email back from the library to find out more about the job. I'm not very patient, and it's driving me crazy.

I find myself also getting more and more involved in church. I am about to go through the training to become a mentor for expectant mothers who will have a child with special needs. I'm excited about it, but so nervous. I'll also be giving my testimony to our MOMS group in September. Again, excited, but nervous. I just want to make sure that what I say truly shows how big God really is. I'm so much better at writing my feelings than speaking them.

So, what this post all boils down to is this... please pray for me! I need some guidance and reassurance that whatever I do, it is God's will. Typing this all out helps me to lay it aside and quit stressing over it. So there... it's laid aside!

With love,

Beth

AMC Convention 2011

2011-07-11T21:33:00.007-05:00

We made it back from Kansas City safe and sound last night. We drove straight through on the way home, and it really wasn't terribly bad. The 11 hour drive was totally worth the awesome experience we had while there. We were one of 9 Escobar families there, and I feel like we all bonded so closely! I will go ahead and say that I took lots of pictures and videos, so I'm going to have to post a link to everything instead of directly posting it here on the blog. This is the first link and it will take you to our pictures. AMC Convention Pics

Now on to our Kansas City story...

The first night of our trip was spent in Springfield, MO. Very nice town! Nick even commented that he could live there. Springfield is about 3 hours from KC, so we got up the next morning and headed out. When we arrived at the Hyatt, we immediately figured out that there was also a Barbershop Chorus Convention going on that week! More on that later! So, Wednesday night was spent mostly just hanging out and greeting new and familiar faces. This was also the night that Reece, Haley, and Mason became fast buddies. After registration was over, we headed out for some of the KC bbq everyone said we needed to try. Our bbq joint of choice was Jack Stack's. I will say that it was really good. That night brought much needed sleep, and the next morning we hit the floor running! We began the convention with a slide show of all the AMC kiddos showing off their skills from the past year. Then, an awesome speech was given by Mr. Ward Foley, aka Scarman. Ward is an adult with AMC who has faced many challenges in his life, many not related to his "diffability." Through it all, he has kept his faith in God and maintained a positive (and hilarious) outlook on life. One of his jokes being, "I used to a member of a gang. There were the Bloods and the Crypts. I was a "crip." You couldn't help but laugh at him! He also orchestrated the children's activity on the last day where they each were given a doll and marker and instructed to make their own Scarman doll. We were able to draw Reece's scars on his doll and talk about them. Very sweet keepsake... After lunch, I attended the session with the craniofacial doctor from Oklahoma. The best thing I learned from that session was that it is not necessary for Reece's "hole" to be completely closed. It'll be fine just the way it is. Sure, I had already been told this by two other doctors, but to hear him say it in his speech without my asking made it reassuring. The next session was all about physical therapy from a therapist at the duPont Hospital for Children in Delaware, which is also the facility responsible for the Escobar research study. I got lots of great tips from her. We then had an informal Escobar Syndrome session, where we could have all talked for much more than an hour. Luckily, Suzanne Rudder had organized a dinner for all of us at The Crayola Cafe. Yeah, we could have stayed there all night too! Thursday night was Reece's debut in the AMC talent show. You see, he danced the entire way through the show. No matter what the contestant was doing, Reece was dancing in the aisles. Several people tried to talk him into it, and it wasn't until the end that he finally decided to get on up there and strut his stuff. The song he chose was "Accidentally in Love" from the Shrek soundtrack. Now, I need to back up and say that his infatuation with Haley Rudder had already started. I even have video of them with their arms wrapped around each other while watching the show. So, from where I'm sitting I'm videoing with the camcorder to the side of the stage. Nick is out in the crowd with his phone camera. Halfway through I see Reece dance out into the crowd, and everyone goes nuts. I had no idea what he had done until afterwards. My 3 year old son had danced out into the crowd, and grabbed Haley's hand trying to pull her up on the stage with him to dance. I still cannot believe he did that! The rejection didn't bother him at all, though. He kept right on performing (and chasing Haley.) Here's the video link! http://youtu.be/O8QFt0ZeYdw

I will go ahead and mention the fact that while Nick, Reece, Haley, Mason, Suzanne, and I were walking in the lobby, Reece was walking a little ahead of Haley, but had his head turned so he could see her. Poor guy ended up tripping over his feet and falling right in front of her! He wasn't hurt, so we couldn't help but almost pass out from laughing. You might say that he was literally "head over heels" for her!

The next morning I sat in on a session on clubfeet and vertical tali (what Reece has) with Dr. Dobbs, a pretty prominent guy in the orthopedic field. At the end, I took Reece up to him to let him see how he walks on the inside of his feet. I asked for a suggestion, and he immediately gave me the term "hemiepiphysiodesis." I googled it, and sure enough, it looked like it might be a procedure that could help Reece's feet. I'll be asking Dr. Schmitz about it in August. For lunch we ate with friends at Fritz's, the choo-choo restaurant. It was the neatest little place. You call in your order from the table, and then a train brings your food to you from up above and across the restaurant, drops it onto a tray, and then lowers it down to your table. The adults were much more excited than the 3 preschoolers we had with us!

I attended some of the other sessions (Poor Nick was stuck babysitting, only because he's not a very good note-taker!), and then we headed out for dinner in the revolving restaurant on the 42nd floor of our hotel. I, unfortunately, had bad luck and my food was not very good, but the experience was really neat! I don't think Reece totally understood that we were spinning while eating, but he still enjoyed it! After dinner, we just happened to run into some of our Escobar family in the lobby. Pretty soon, several of us were all sitting on the floor chatting away like we had all known each other all of our lives. Various ages were represented, so we were all getting/giving advice to one another, pulling out feet to compare, and discussing how to deal with insurance. It's one of those moments that I will never forget. Now, I know that sometimes I can get a little too sappy, but all of us share something. Of course, it's a crazy gene mutation, but still, there's only a handful of us in the world. How could we not feel strongly connected? It's hard to put into words, but the best way to say the way it made me feel was that I could literally feel my heart swell around these families. The kids took care of each other, and we took care of each other's kids. I absolutely adore my "typical" friends, but these friends knew just what Reece needed. When he was having trouble picking up a ball from the floor, sweet Gabby (who we met for the first time) was there to help him. She, too, had probably struggled with that at his age. Reece has never played with other children the way he played with these children. He wrestled with Mason, both making the same grunting noise I might add, and separated from me on multiple occasions. There was no fear that one of them was going to knock him down or run off and leave him. They were all moving at the same speed! And, oh my gosh, all of these kids were born with the most hilarious personalities! Whether it be 16 year old Nicole rolling her eyes in embarrassment at her mom or 3 year old Mason's reply to me when I asked the question "Mason, what's this?" pointing to a painting on his arm. Mason: "That's an arm." You can be certain that we laughed a ton this past week. I also realized just how intelligent they all are. Sweet Grace Novacheck saw Reece for the first time since last year and said, "Hi Reece buddy! How old are you now?" She's about a year older than Reece! I mean, how mature she is! I wish I could share her singing "The Star Spangled Banner" in the talent show with an external fixator on her foot and smile on her face, and Nicole playing two songs on the harp, one of which she composed herself, after being told that she may never use her fingers. I mean, these kids are AMAZING!

Saturday was a laid back day with no major events except for the big group picture. After that, we found a spot on the floor and once again sat around chatting and playing with the kids. I was so excited that I finally got to hold Monroe, one of our newest Escobar additions. She is beyond precious! While we were sitting around, Reece grabbed Haley and told her to give him a kiss. Seriously, I don't know what got into this child! In the meantime, one of the groups of barbershop singers was practicing and decided to serenade Reece and Haley. Haley was not too keen on it, but Reece stepped right out and began conducting them. Everybody got the biggest kick out of him! There were random people standing around videoing him. He definitely made a name for himself that's for sure! Here's another video link to that performance. http://youtu.be/vfxGixC3F7E

Reece painted that afternoon, made his Scarman doll, and we watched the ending slideshow from the week. They also announced that next year's convention will be in Indianapolis, IN. I'm begging Nick to fly to that one!

Saturday night, we attended dinner with the Rudders and another sweet family of 5 at an Italian restaurant. Reece had fallen asleep prior to us arriving and was quite ill when we woke him up. For example, when we were trying to decide who would say the blessing, Reece was dead set that he wasn't saying the blessing and wasn't bowing his head either. After I finally said it, Reece pitched a huge fit to which I replied, "Reece, would God be happy with that attitude?" He paused, thought for a sec, and said, "He would." I thought Suzanne was going to fall out of her chair! Haley and Reece are so much alike that we can't imagine what their children would be like if they ever did get married!

After dinner, we stopped in the lobby and let the kids run around and play for awhile. To make my case for the last sentence in the last paragraph, I'll give you this illustration. Reece and Haley are running around chasing each other, playing hide and seek, etc. When all of a sudden, we notice we haven't heard them. I look across the room and the two of them are standing at a table. Nick was standing, so I told them that he better go see what they were up to. As he slowly approaches them, they immediately start using two hands to scrape up and lick this white powder off of the table. See, they had discovered the remnants of some child's pixie stick, but they knew that licking it up off of the table would probably be frowned upon by the parental units. Sneaky, wouldn't you say?

We lingered for a long while, not really wanting to say goodbye. Especially after Haley told Nick that she wanted us to move to KC because she "needs to see Reece every day." You can't help but get teary-eyed. We decided that when the kids get old enough, we'll fly them back and forth to spend time with each other.

So, it was bittersweet. I definitely didn't want to leave all of the people that I felt normal around, but I did miss my bed! I suggested an AMC planet where we can all live and feel absolutely typical! Where casts, splints, rolling on the floor, and scars are everyday sights, and where everybody just "gets it." Maybe one day... Until then, we'll just live in our little world and shine our little light named Reece.

With love,

Beth

If It Weren't For Reece...

2011-06-30T21:04:00.003-05:00

So, a couple of days ago I had decided that I had a whole list of things I would have never experienced if it had not been for Reece. I decided it might make a pretty good blog post. Before I get into my "list," I want to thank everyone who showed their support for Reece and our AMC family today by wearing blue. It may seem like such a minor thing to do, but it means the world to us, especially for Reece now that he understands it's being done for him. So, thank you, thank you, thank you!

Secondly, I want to update you on our trip to Atlanta. Reece and I made this trip all by ourselves, and everything went super smoothly! Angel Flight took excellent care of us there and back, and our sporty red Kia Rio got us around Atlanta! Reece'a appointment with Dr. Peljovich went very well. His thumb looks great! The wrist did not get quite the extension as his right one did, but he's still holding it like it's in a cast, so that could change. Overall, we are very pleased! I talked with Dr. P about the possibility of any kind of correction for the skin webbing on Reece's elbows. I was very hesitant to ask, but I had already mentioned it to the plastic surgeon a while back and he told me to talk with Dr. P. They would work together if it can be done. But, basically, Reece would have an MRI on his elbows to see if there are any major arteries or nerves embedded in the webbing. If there are, there's nothing they can do. If not, and it appears it would help Reece's function in self help, then they would go in and try to reduce the webbing. Nick and I have decided to go ahead and schedule the MRI for August when we go back for the other 5 appointments. That way we will know that we did everything possible to help him.

Now, I will go on with my list. I'm sure after posting I will think of even more things, but for now I'll write what's in my head! Some are serious, others might make you laugh, but they are all true!

If It Weren't for Reece...

* I would not believe in the power of prayer as strongly as I do.

* I would not have become involved in the special needs ministry at church.

* I would not have met the countless number of amazing AMC families at convention and/or through the internet, especially overseas.

* I would not have developed the patience to deal with those who are differently-abled. Heck, "differently-abled" would have probably never been in my vocabulary!

* I could not have shared my faith so openly with others.

* I would not have enjoyed each and every precious milestone a child makes as much as I do with Reece.

* I would have NEVER flown in a small, general aviation airplane.

* I would have NEVER gone to a big city like Atlanta by myself.

* I would not appreciate the way the body's bones, joints, and muscles work so intricately together.

* I would not have known so much about physical therapy, occupational therapy, speech therapy, casting, splinting, and stretching that I quite possibly could have a degree in them.

* I would not celebrate when my child opens a door by himself or climbs up stairs independently.

* I would not have had the opportunity to watch how God's glory radiates brightly every time my child smiles.

Do I have my bad days? Of course! I'm human. But, when I sit back and really think about our lives in the big scheme of things, I know that life is pretty darn good! After all, we're only here on Earth for a short time before our Maker takes us home! There Reece will be healed, but for now, he's on a mission for God!

I hope all of you have a wonderful 4th of July weekend! Be safe!

With love,

Beth

AMC Awareness Day!! Wear Blue!!

2011-06-28T08:21:00.003-05:00

Thursday is the 2nd Annual Arthrogryposis Multiplex Congenita Awareness Day! To show your support for Reece and his AMC friends, please wear blue on this day! Take your picture and email it to me at beth.barham@gmail.com so I can show Mr. Reece how much people are behind him! We'll be in Atlanta on Thursday getting his cast off. What better day to celebrate getting his last foreseeable cast off??!! Once again, we'll be flying with Angel Flight there and back. Still can't believe what an amazing blessing this organization is!

When we get back from Atlanta we have 4 days until we leave for the convention in Kansas City, MO! We've decided to make the 12 hour drive over two days. ROAD TRIP!!! We are super excited about the convention this year. The Rudders have helped to organize it, so there will be some special sessions dedicated to Escobar Syndrome. On top of getting some helpful info, we will get to see other Escobar families, which is the highlight of the convention in my opinion! When you share something so rare, you can't help but feel like family!

So, obviously we have a busy next couple weeks! It's all a good "busy", so I'll take it!

We're off to get my hair cut later this morning. Taking Reece with me for the first time... should be interesting!

With love,

Beth

Reece Dancing to VBS Song

2011-06-27T16:56:00.002-05:00

Here's a video of Mr. Reece dancing and singing to "Love You More" from his VBS cd he got in Carthage. Enjoy!

http://www.youtube.com/watch?v=5wrJ5GBTGoY

Free Time for Mama!

2011-06-20T19:19:00.003-05:00

Reece is in Carthage for the week, and so far I've ransacked his room and playroom. I hope he doesn't miss anything when he gets home. He's only been gone for 4 hours! Imagine what I can do with 4 days! This could be interesting. On my "to do" list for this week... sewing, scrapbooking, doctor's appointment, lunch with Nick at Mint (using our Groupon), and just sitting :)

He had a play date today with his friend Tyler and his big brother Bryce. He had so much fun, and we're so grateful for the friends he has. I've always read and heard "Kids with disabilities often get left out of birthday party, play date, etc invites. Not the case with Mr. Reece! He keeps my calendar hopping! We are so blessed to have wonderful friends who see past Reece's limitations and aren't afraid to include him.

Well, I'm off to just sit and watch tv! Ahhh.....

With love,

Beth

Reece Climbing Stairs

2011-06-17T00:07:00.003-05:00

I'm trying out a new way to post videos on the blog.

This is when Reece climbed 4 flights of stairs at the Atlanta Ronald McDonald House. You should be able to click on the link and it will take you to the video.

http://www.youtube.com/watch?v=gjf2FIoGiVE

Slow Days of Summer

2011-06-16T23:10:00.003-05:00

Things have been mighty lazy around the Barham household the last few days. Our church had Bible school this week, and it was at night this year. Reece has been getting in bed no earlier than 10:00 each night. It's been pure bliss to stay wrapped up in my cozy bed until 8:30 and 9 in the mornings. The dogs just sit and stare at me. I think they've been watching me breathe or either willing me to wake up and get the day started. Nick is enjoying some much needed time off this week as well. We have him home until Sunday. I've already put him to work around here! After our computer did not even have enough memory to download a single email, we threw in the towel and headed to the Apple store. It's been a long time coming since we haven't been able to load all of the video we've taken of Reece. Now maybe I will actually be able to post some more footage of our entertainer! After buying the computer, we decided to rearrange a bit- moving the desk into the living room and moving Reece's tv into his playroom. It all looks really great, and I think it's (almost) quenched my urge to get a new house! I bought a great new, well it's a vintage, breakfast table and bench and refinished some consignment store chairs. I must say that I'm pretty proud of how everything turned out! It even looks like we have a buyer for our old table and chairs thanks to craigslist. Now, if I can get a new refrigerator...

Reece will be headed to Carthage for Bible school next week. Not quite sure what I'll do with myself! I did learn how to applique at my last sewing class, and I've got a few shirts I want to make for Reece. I found some really cute pirate fabric at Walmart, and since he's really into pirates these days, I thought that would be fun.

Reece's new words these days are "whatever," "cooperating," and "serious" (As in, "I'm serious, Mama." He told me tonight when I was trying to wash his feet that they were not cooperating. I overheard him tell his physical therapist yesterday "ok, whatever." He's enjoying fighting Ridley and his Daddy with a foam sword he got at a birthday party, and he loves to play like he's going out to eat with his stuffed animals. We're trying to curb his interest in the DVDS, and we're going to get more help for that in August. More to come on that later, but for now, we try to distract as much as possible. Anything he remotely shows interest in, we hone in on it. Hence the fleet of little metal Cars from Disney's movie.

I think I forgot to mention that we had his 3 year check up last week. We were a tad late since his birthday was in January, but we've had a lot going on :) He weighed in at 23 lbs and measured 35 inches tall. It's so hard to get a true height for him since he has a crouched stance. Dr. Denney's nurse measured him lying down with me straightening his leg out. The week before he was only 33 1/2 inches standing. I'm going to say the 35 is more accurate.

We're on the countdown for cast removal. Two weeks from today is the day Dr. P will saw it off. Reece told one of his friend's mom's tonight that "We have to call Comfort Suites to see if they have a hotel room so I can get my cast off." He repeats everything! I had just said that this morning!

We're also counting down the days until the AMC conference in Kansas City! Soooo ready to see everyone! It's going to be a long drive, but it'll be worth it!

That's all I can think of tonight. Maybe now that the computer is in the living room, I can update really quick when Reece says or does something newsworthy!

With love,

Beth

A Trip Filled with Blessings

2011-06-05T08:52:00.006-05:00

This trip was filled with so many blessings that I don't even know where to begin. The first blessing began with the Angel Flight to Atlanta. We were treated like royalty, and it felt so surreal. We just happened to get one of the biggest planes for our trip there. The pilot and copilot arrived, took our bags, had pictures made with us, strapped Reece's carseat in, and helped us up into the plane. We were in the air for 1 hour 20 minutes as opposed to 6 hours in the car. Once we arrived in Atlanta, we landed at a different airport than originally planned. They had someone pick us up, drive us 30 minutes to the other airport where our rental car was waiting. While I signed the rental paper work, the "Earth Angel" got the keys and pulled it right up to the door. He hugged and kissed us good-bye, and we were on our way. I can't type all of this without mentioning the man responsible for getting us hooked up with Angel Flight. Our sweet neighbor, Ray Leninger, who lives two houses down from us suggested this to us as he is a retired Angel pilot. He went out of his way both at our departure and our arrival back home. He was at the airport at 7:45 Tuesday morning when we left with camera in hand and all the information on our flight. He kept in touch with us about our return flight during the trip, and then he met us at the Jackson airport when we returned home yesterday morning with his precious wife, Alice, took more pictures, then drove us 20 minutes to the Madison airport to pick up our car. Our flight home was amazing as well since Reece scored the 2nd largest plane in the fleet for that. Not only did he manage that, but there was an air show at the Peachtree/Dekalb airport where we were supposed to take off yesterday. Angel Flight received special clearance, and our plane was the only plane allowed to land and take off. All other air traffic was stopped. I told Reece he literally "stopped traffic." The flight coordinator even met us at the airport to see us off, take pictures, and present us with a goody bag full with special things for Reece. Our pilots on both flights were absolutely amazing, and we couldn't thank them enough for what they were doing.

Once we arrived in Atlanta, we headed into a very special "home away from home," the Ronald McDonald House. Reece instantly made friends with Devin, a 15 year old boy facing some life-threatening illnesses. His mother told me that the doctors have given Devin 2 years to live. I've been praying for healing for him several times throughout the day. This young man treated Reece like a little brother, helping him kick the football outside, watching movies with him, and just held him in his lap. They formed a very special bond. At the RMH, we were also treated with amazing kindness. Home-cooked meals were provided by volunteers every night, and food was brought in for all of us to just help ourselves to during the day. Cari, the house manager, took up with the kids, joking and carrying on with them. Again, I felt so undeserving of the kindness we received. There were other children there facing some very serious illnesses, and here we were with Reece, who, although will have a challenging life, his life is not at risk. I broke down yesterday and cried because of the guilt I felt. Isn't that crazy? There's no doubt that with my surgery and the surgery we're still paying for Reece's right hand, that the financial help this charity provided was a huge stress relief. We were there 4 nights. Meals and hotel expenses along with the boarding of the dogs would have really hurt us, so I don't know why I feel so guilty. Nick helped to put it in perspective by telling me to look at how much fun Reece had there. One of the first things he said after his surgery was that he was ready to go back to the RMH. Even when we got home yesterday, he said, "I had fun at the RMH. When we go back to Atlanta, we can go back there." So, I'm trying to push that guilt down and just be grateful that we were able to stay there. I can honestly say that I was a little sad yesterday when we left. We had made so many wonderful friends there and become connected with their stories, that I really hated to leave. It was like leaving a small family. We ate together, watched tv together, and just talked together. I want to stay there again just for the opportunity to meet more amazing families. We all found each other on Facebook, so we can stay in touch. Even so, these families will never be forgotten in our hearts.

So, Wednesday morning we headed to see Dr. Schmitz, the orthopedic surgeon. As you know, it was our first visit, and of course I was nervous. I had already decided that whatever he said, I would accept it and stop worrying. After telling him all I knew about Reece's feet, he examined him and said that Reece's feet actually looked pretty good. He said that he just has a really stiff foot. The goal of surgery is to have a braceable foot, and that is what Reece has. He said that down the road, after Reece stops growing and his bones harden more, the next step would be to perform a fusion where the navicular bone would be removed. We would only do this if it started causing him pain. He also talked to us about Reece's crouched gait (the way he stands with his knees bent). As we've been told before, he does this because of weak quadricep muscles. The only way to help that is to strengthen those. Hopefully the new ankle weights I got for the pool will help that some. We talked with Dr. Schmitz about the risk of scoliosis and restrictive lung disease that goes along with Escobar. We told him that we were concerned about the VEPTR surgery being in Reece's future. He decided to do an xray of his spine. Previous check, Reece's spine was at a 19 degree curve. So, when Dr. Schmitz came in and said "Reece's spine is as crooked as an arrow," it took me a minute to realize that was a good thing. God had straightened Reece's spine! Dr. Schmitz went on to say that VEPTR surgery was a million miles away for Reece, and we should not be concerned with that at all. WHEW! We were certainly relieved to hear that. He told us that if he had been the one to perform Reece's feet surgery then he would xray them at 6 months. So, we made another appointment with him in August when we go back to see all the other drs there. We've pretty much decided to just transfer Reece's orthopedic care there. Not that we're unsatisfied with Shriners (besides the AFO fiasco), but just for the fact we won't have to be going back and forth between Shreveport and Atlanta for medical care. It will just simplify things for us, and we really felt comfortable with Dr. Schmitz.

On to Thursday... This was our free day. We hung around the RMH for a while and then headed out for lunch and a movie. We decided on P.F Chang's for lunch, and we had no idea what would occur there! It all started with the manager treating Reece with a free dessert of his choice. Then, while Nick and Reece went to the bathroom, the manager came over to me and was talking about how happy Reece was. He then asked, if I didn't mind telling him, what Reece had going on. I told him the short version and told him we were here for surgery the next day. Well, when Reece and Nick got back, the waitress brought our check. The manager said, "Reece, I've got something for you, and there is going to be a new check." He left our table and came back with a $25 gift card that he gave to Reece, and a new check. When Nick opened it up, it was for $7.50. We were overwhelmed with emotion. I don't think I have ever cried in public, but I did Thursday at P.F. Chang's. Mike was his name, and I'll never forget that amazing kindness he showed us. He had to get a picture of Reece with the statue in the window and promised to show Reece the horse statues and the ducks in the pond next time we visited him. You know, there are still good people in the world today. They're hard to find, but when you do, you know without a doubt that God placed them in your path. Mike was one of them.

We went to see Kung Fu Panda 2 after lunch, went back to the RMH for a while, and then headed out to have pizza before Reece was banned from food before surgery.

The next morning we had to be at the hospital at 6:00. They took Reece back to the OR about 7:30 after giving him his "goofy juice." He was so funny, as usual. When they gave him the medicine, he pointed to the the pediatric pain scale of different facial expressions and said, "This medicine will make me have a happy face!" Surgery lasted about an hour and a half. Dr. Peljovich came in and spoke with us afterwards. He was able to get as much lengthening in Reece's left thumb as he did in the right thumb back in October, but still enough to improve function. Just like the right, he was able to gain some extension in his wrist as well. He also managed to obtain a couple of muscle biopsies for the research study in Delaware. Reece chose a lime green cast (his first choice was hot pink, but we talked him out of that) and came back from recovery where he slept in my arms for about an hour. When he woke up, he told us in an angry voice, "Dr. P-Peljovich didn't have on a white shirt!" You see, before every surgery we read Curious George Goes to the Hospital, and Thursday night we watched the movie that went along with it at the RMH. In the book, the doctor that operates on George is wearing white scrubs. Dr. P had on blue. Reece was highly ticked that his surgery didn't go just like George's. This child doesn't miss anything. We were released from the hospital about 1:00, something new for us since we're normally admitted and were back at the house. Reece popped into DVD land like he never even had surgery. Ms. Cari was cutting up a HoneyBaked ham, and he ate some of that with leftover homemade mac and cheese. I'm telling you, you eat good at the RMH in Atlanta! We finally convinced him into a nap, and we all konked out until supper time. Friday morning, we said our goodbyes and headed to the airport for our Angel Flight home. We left Atlanta at 11:15 EST and were in our house at 12:30 CST. I was able to go to the grocery store, pick up the dogs, and unpack while Reece napped. Then, I crashed. The trip hit me, and I was exhausted! We ate a quick supper, and then we all hit the bed.

Now, you can see why I say this trip was full of blessings. It's so amazing to me how bright Reece's light shines. He attracts people wherever we go. I always try to make it a point to explain to those people that Reece is a miracle, and I hope that people can see by the way we live our lives that God is responsible for all of the good things we have. I mean, when I sit back and think about how many nice things were done for us on this trip, I see God orchestrating it all up on His throne in Heaven. He doesn't miss any details, no matter how small. And, you know what? All it makes me want to do is pay it forward. I want to do something nice for someone in return for all of the nice things done for us. So, I'm on the lookout this week!

I've added a few pictures from our trip below. I hope you enjoy looking at them!

With love,

Beth

P.S. I've got to add the video of Reece climbing the stairs at the RMH. He's never done it before, and we didn't even know he had done it until he'd climbed one flight already! I'll try to get that on here over the next few days!

Boarding our first Angel Flight

Reece ready for take off!

Our Angel pilots to Atlanta (Scott Wiggins and Michael Cardwell)

Killing time at the Perimeter Center Mall

Tibet- One of the therapy dogs that came to visit

Reece was feeding her a treat.

You can tell he was right at home here :)

Pre-Op

Post-Op (Mama can get good snuggles in during this time.)

The boys of the Atlanta Ronald McDonald House

Sporting his new Angel Flight cap while awaiting our plane home :)

Our Angel pilot who brought us home- Dr. Delbert Hahn

Love This!

2011-06-03T07:30:00.001-05:00

All glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.
Ephesians 3:20

Sent from my iPhone

Our Normal

2011-05-25T21:27:00.003-05:00

Settle in. I've got a lot to say.

The countdown is on until we leave for Atlanta. We are thanking the good Lord that we have an Angel Flight secured for our trip there. We'll leave out at 7:45 Tuesday morning and be in Atlanta around 10:30 or 11. That sure beats a 6 hour drive with a 3 year old. We're hoping that the Ronald McDonald House will be able to accomodate us this trip as well. We'll be there at least through Sunday, so the hotel stay could get pricey. We also are blessed to have received the Angel Flight discount at Enterprise Rental Car once we get to Atlanta. $25 a day is not too bad considering it takes $72 to fill up my vehicle, and we usually have to fill up twice on Atlanta trips. Wednesday morning we'll be seeing this new orthopedic doctor. I'm excited and scared at the same time. I just hope that Reece's little feet are not as bad as they look on the outside. We did get some new (very well made) AFOs this week. From what I can tell, they seem to be holding his feet in a much better position than the ones from Shriners, and there are no red marks where they rub him. I'm also going to ask this new dr to take a look at Reece's spine and chest. I probably shouldn't even be worrying about anything because I can't see anything that concerns me, but I know that the pulmonologist told us his chest was smaller than normal. This is a major Escobar component, and it seems that the majority of these kids are having to undergo a VEPTR surgery. You can read about it here, but it's basically a series of surgeries that gradually expand their rib cage to make room for growing lungs. Here I am praying that this surgery a week from Friday is our last surgery, but I am absolutely terrified that this VEPTR surgery is in our future. I'm praying strongly that Reece's chest will grow, and I know God performs miracles. I say this, just as I was in a heated discussion with Him last night about Reece. Ok, so I'm all over the place in this post, but our discussion was basically a lot of "whys??" Now, I know the answer to that question just as well as I know my name. The answer is in the title of our blog, but Reece said something last night that just ripped my heart out. And it wasn't necessarily what he said, but how he said it. He's been having mornings where he's waking up and does not seem rested, so I thought that maybe it was because he was not night time potty trained. As I started thinking through how I could start this process, I asked him if he wanted me to start waking him up and carrying him to the potty at night since he couldn't walk on the floor with no shoes over his AFOs. He told me, "Yes, and because I can't open the door by myself either." Logically, I know that not all 3 year olds can open doors by themselves, but the fact that he had thought this through and saw it as an obstacle is what broke my heart. Then, I had to think about the knee immobilizers he's supposed to be wearing at night. Well, even if he could walk across the floor in AFOs, open the door, and climb up to the potty, he still is unable to pull his pants down (because of his wrists and elbows), much less pull them down over those bulky immobilizers. I went into my bedroom, had a good cry, and decided to turn to my Escobar family for help. Of course, they answered my plea immediately and gave me more. Thanks to them I ordered light switch extenders so Reece can turn lights on and off by himself, and we headed to Lowe's today and purchased a lever door handle for his bedroom door. These things may sound so insignificant to you, but for a little boy who is limited in his independence they can be a huge confidence booster. The evidence of that came after Nick and I installed the new door handle, and Reece tried it out. The smile on his face was absolutely priceless. The "I did it!" from his mouth were some of the sweetest words. When Uncle Cass and Kate came over, the first thing he wanted them to see was how he could open and close his door all by himself. I said last week that I would begin finding tasks he can do and overly emphasizing them. I think this is a good start. I can't wait until the light switch extenders come in!

You know, I just get so upset when I think about how bright he is, and how his little brain knows what it should be doing but his body is unable. It just seems really unfair sometimes, and I think he's starting to think that occasionally too. I find myself dreading birthday parties, play dates, etc because they will force me out of the little bubble that is "our normal." When I pass through that bubble, I really see how abnormal our situation is no matter what I try to do. Of course, I don't think Reece has fully realized that yet, and I pray that he maintains that innocence until he can begin to see the flip side of our situation, the side that reveals that God is doing something big. I've always heard that God calls Christians to be abnormal in a so-called normal world. Is this what He means? I've had so many people tell me how inspiring I am, and what a strong Christian I am. When things like this are said to me, I just want to duck under a table. I'm not a perfect Christian. There are days like yesterday when I get so furious with the position God has put me in. When I wonder why I'll never have another child without worrying about he/she being affected and yet there are drug addicted mothers having perfectly healthy babies left and right. God always does have a way of placing perspective in my face, though. I had a long conversation with an older African-American lady yesterday while we were waiting on Reece's AFOs. She was a very religious woman quoting scripture and giving advice, and I think I could have sat and listened to her all day while she told stories. Even after telling her that Reece's condition was genetic, she told me over and over that I needed to have another child, even telling me that next time I get pregnant to take cod liver oil to strengthen the baby's bones. Normally, this would have upset me to the point of tears, but for some reason the way she was talking to me, it didn't. I had tears in my eyes, but it was for another reason. I truly felt that God had placed her in that waiting room with us for some reason although it's not obvious to me right now. She told me, "You just have to keep the faith. The Lord will bless you, baby." You know how sometimes you just make a connection with someone? I don't know how to describe it, but it really felt like a spiritual connection. Now, I've digressed from the fact that I'm not a perfect Christian... My biggest sin is doubt. If I could just stop worrying about Reece and his future and give it all to God, then I might feel a little better about my Christianity. I know in my heart that God has this, but that Mama Bear instinct is so strong that it takes over my heart a lot. It would just be so nice if God could show me Reece's life a few years down the road to ease my mind a little. Are you reading this, God? :) I just often wonder if I'm missing a path He wants me to take.

So, Friday is the surgery for Reece's left thumb and wrist. Oddly enough, my 3 year old talks excitedly about Dr. "PPeljovich" putting scars on his left hand like his right. See what I mean by "our normal?" We're also hoping that Dr. P will be able to obtain a muscle sample to send to Delaware for the research study. I mailed our info packet in yesterday, so I'm excited to see how God uses this.

We had a neurologist appointment with Dr. Veda last week, and we have decided to try Mestinon again in hopes that it improves Reece's endurance and strength. We're praying that this drug could help prevent the possible lung capacity problems he could have in the future. We've taken the Mestinon before when he was 9 months old, and it seemed to have opposite the effect we wanted so we took him off of it. However, we have learned that a lot of times this happens in the beginning and gradually things get better. Now that he is able to tell us how he feels, we are more comfortable with trying it. This time Reece will have a nerve conduction study performed immediately before being admitted for 23 hour observation in the hospital while he is given the Mestinon. Hopefully, this will more accurately depict the effects it will have as well as provide a better way to properly adjust the dosage. That is scheduled for August 17 at Blair E. Batson Hospital for Children here in MS.

Now, that I've caught you up to date, I think I'll sign off. I've added another sweet Escobar baby (you wouldn't believe how many we know now!) to our blog list at the bottom of the page. Please continue to keep all of our Escobar family in your prayers. While I'm aware that things could be so much worse that what we deal with every day, some days all I can see is what I'm facing. So forgive my pity party above.

With love,

Beth

One Crazy Trip!

2011-05-14T11:41:00.003-05:00

Wednesday morning Moni, Reece, and I headed out for Atlanta. Little did we know what kinda of chaos would ensue! When we reached Meridian, MS (about 1 hour from home), we came to a complete halt on the interstate- for about 45 minutes. I finally decided to take the exit that we were stuck by and pray that Mary, our GPS, could get us around the mess! Thankfully, she did and we ended up right at the very Subway Reece had been insistent upon eating at since we had left the house. He's an extremely lucky little guy! Turns out that a log truck had spilled his logs, so there's no telling how long we would have been sitting on the interstate. After our detour, the trip was uneventful until I totally missed my exit in Atlanta because I was running my mouth. Mary once again came through for us! So, Thursday morning we woke up, went downstairs to the hotel breakfast, and Reece proceeded to throw a crying, screaming fit in the middle of the breakfast area because he wanted a blueberry muffin and they didn't have any. He threw such a fit that the lady went to the back and found him two. I told him that he had better eat every single bite of it, and he did a pretty good job. He knew his Mama was hot with him! So, off we headed to the ENT appointment. When we got there, the receptionist asked me for our insurance card and drivers license. I opened my wallet, pulled out my insurance card, and then began frantically searching for my drivers license. Then it hit me. I had put it in our pool bag and forgot to put it back in my wallet. So not only had I driven all the way from Mississippi to Atlanta without a drivers license, but now they were telling me that they may not be able to see Reece without a picture id. To say that I was upset is an understatement. God surely softened the administrator's heart because they let us in to see the doctor. Lesson learned...

We finally met Dr. Sipp (who was wearing a large, lime green bow tie, by the way), and he was a very thorough intelligent guy. He decided to put a scope down Reece's nose to look at his adenoids since he wanted to see how Reece's cleft palate moved. Reece was not a fan but said perhaps the funniest thing he's said in a while. After the scope was pulled out, there was a little booger hanging out of Reece's nose. I pulled it out, and Reece said, "Is that my adenoid?" Made sense to him! He thought Dr. Sipp had performed the surgery right there! Gotta love my little thinker! So, after examining the adenoids, Dr. Sipp threw us a curveball. He said that he did not think it was a good idea to take Reece's adenoids out since there is still a cleft there in his palate. If the adenoids were taken out, Reece's voice would become more nasal sounding than it already is. He would have to have another surgery down the road to correct that. He told me that he would call Dr. Kirchner (the pulmonologist) and then he would call me back. So, an hour down the road, he calls my cell phone to tell me that he and Dr. Kirchner had talked and Dr. K still wanted Reece to have the adenoidectomy because of the mild sleep apnea. Great. Now, we were faced with this huge dilemma. Who do we listen to... the pulmonologist or the ENT? So, I got on the phone and called every one of Reece's doctors that might have an opinion on this. Dr. Carron (our ENT here in MS) called me yesterday morning and agreed with Dr. Sipp. He said that he wanted to place Reece on a steroid nasal spray to try to shrink his adenoids and avoid the surgery. Perfect solution for us! So, no adenoidectomy on June 3!

Among the other crazy things that happened to us on this trip... a crack in my windshield from a rock, Reece's first potty stop on the side of the interstate (which he thought was cool with his tee-tee hitting the tall weeds, and Mama did not think was so cool since I had no idea what I was doing and it got all over my hands. Daddy needed to have been there for that little milestone!), Reece's bad attitude at our lunch stop, Moni getting hit on by an 85 year old man at Cracker Barrel, and a long wait for what was supposed to be a quick supper pick up for Reece. I was soooo ready to get home!

Among other news- We will be getting a 4th opinion on Reece's lower extremities on June 1. Dr. Peljovich's office called with a doctor recommendation for us yesterday, so we'll be seeing Dr. Michael Schmitz in Atlanta. Please just keep this appointment in your prayers. Reece's feet are not any better after this last surgery. In fact, his PT commented that they actually look worse. We are just so frustrated and worried. We're still waiting on his new AFOs to be made, and we're hoping that those will help some. However, we just really want someone to take as close of a look at his lowers as Dr. P did with his uppers. They've done it in bits and pieces at Shriners, but it just seems that they are not being as thorough with his care there. We like all of them there, but it just may take another doctor to examine Reece like he needs to be examined. I kinda feel like this doctor is our last hope. We COULD go to Seattle, but that is so far away and plane tickets are outrageous. It is always there, though, if this doesn't work out. The worry and stress have really been taking a toll on me lately. I eat, sleep, breathe Reece's care. So much for just being his Mama, right? That lasted such a long time, didn't it? I don't know why, but I just feel this urgent need to get on the ball with all of this stuff. I'm tired of it honestly, but I love him so much that I don't know how to stop. I just have this fear of the future for him, and it is consuming me. Anyway...

Speaking of planes, we are so blessed that we were accepted in the Angel Flight program. Our sweet neighbor is a pilot for them, and he had mentioned it to me a while back. With it looking like Atlanta will be the hub for Reece's medical care, I decided to look into it. Thankfully we were accepted! This will save so much time and money for us. It's a major stress reliever! We'll take our first Angel Flight when we head for Reece's hand surgery and new lowers consult in June.

Some other big news- we will be participating in an Escobar Syndrome research study being done at A.I. Dupont Children's Hospital in Delaware. It's a 2 year study where they are just collecting data on the Escobar patients and trying to find out more about the condition. I spoke with the clinical director yesterday to find out what all they need from us. Because I'm so anal, I have tons of Reece's records in a big 3 inch binder. All I have to do is make copies of pertinent records for the study and send them in. There's no bloodwork required since we already have genetic confirmation of Escobar, and there's no trip to Delaware required. I'm just so thankful that they are doing this, and I hope something good comes out of it. Keep this study in your prayers as well. With Escobar syndrome being so rare, any new info will certainly be useful.

Ok, I've typed long enough, and I think I've caught you up on everything. We're spending this Saturday at home!

With love,

Beth

Mother's Day 2011

2011-05-08T21:51:00.002-05:00

What can I say? I spent it with my little buddy whom I love with all of my heart! His Daddy and he made Mother's Day weekend very special. Today I also remembered the baby Nick and I lost before having Reece. Makes every day with Reece more precious.

I hope all of you mothers had a wonderful day as well, but to my "special" mothers I leave a message someone posted on Facebook.

With love,

Beth

For all the moms who had to wait longer to hear a first word,

who spent more time in doctors offices with their child than on play dates,

who endure the countless 'bad days' and the stares from other people..

For the moms whose child's first friend was their therapist..

For the moms who face special needs everyday..

Happy Mothers day to the greatest mothers of all!

Sleep Study Results In

2011-05-06T08:26:00.002-05:00

Dr. Kirchner's nurse called a couple of days ago with the results of Reece's sleep study. It turns out he does have mild sleep apnea. During the study, his average O2 saturation was 97.5% with the lowest being 87.9%. He woke up 35 times, with 6 of those times being because of breathing issues. Dr. Kirchner feels that all of this can be cured by removing his enlarged adenoids. So... in order to decrease the number of times he has to go under anesthesia, they are going to do it at the same time of his left wrist/thumb surgery on June 3. An ENT will perform the adenoidectomy. Our ENT is here in Mississippi. What does that mean? We get to add ANOTHER ENT to the mix in Atlanta. But, before we go in for the surgery we have to go in to consult with the new ENT. That means another trip to Atlanta... next week! Yes, we just got back from there last week! So, this Thursday we'll be meeting with Dr. Sipp at Pediatric ENT of Atlanta. I'm just praying that we like this guy. You know how picky I am with Reece's doctors :)

In orthopedic news, Reece was molded for new AFOs here at home by the sweetest orthotist you will ever meet. He is determined to help Reece's feet get into a better position. I'm having such doubts about the surgery Dr. McCall did at Shriners. I'm just so afraid we should have gone with our first instinct and flown to Seattle to meet with the surgeon that did the Rudder kids' feet. Reece's sweet PT tried to make me feel better by saying that "you just do what you think is right at the time." I just don't think that I ever truly felt that this surgery at Shriners was right at the time. Ugh... I swallow hard when I think about it. Now, all we can do is work hard to keep those feet from regressing. We rejoined the YMCA, and I'm getting him back in the pool to stretch and strengthen. I did find a physical therapist to do aquatic therapy with him, but getting insurance to pay for land physical therapy and aquatic is going to be a huge ordeal. I just may research on my own and get tips from Beth, his PT. He doesn't do nearly as much for me as he would someone else, but we've got to try. Plus, he'll be starting more PT with the school district in August, so maybe that will be enough. I'm just in this I've-got-to-do-everything-I-can-for-him mode. I'm so scared of failing adult Reece. There are new worries every day. They never stop. Plus, we are finding that the breathing problems only increase with age. God, just place your hands on his lungs, spine, and ribs. Spare him from this suffering that can be associated with Escobar. You've blessed him so much already. Please continue to watch over him.

He also has some social fears and behaviors we are concerned about now. (By we, I mean me. Shocking, I know.) I just would like for us to be able to enjoy a normal life and not worry about every part of Reece's little life. I know part of that is just being a parent, and if you are a parent and understand that- try multiplying that worry times 50 when you have a child with special needs.

This Mother's Day weekend I'm going to focus on being Reece's mama, not his doctor, therapist, psychologist, teacher, etc- just his Mama. When I spoke on the phone with the PT that will be working with Reece through the school, I got off of the phone and cried. Nick asked me what was wrong, and I told him that she said something to me that no one had ever said. When I told her that Reece would not do anything "therapy-wise" with me, she replied, "You don't worry about that. You focus on loving that baby and leave the work up to us therapists." You see, I feel as if there are so many eyes and expectations on me watching to see how Reece progresses. I've got to realize that my only responsibilities are to keep him safe, love him, and guide him in the way of the Lord.

I hope all of you mothers have a wonderful Mother's Day weekend, especially you new ones (Carly and Ashley!) Squeeze and kiss those sweet babies because before you know it, they'll be starting preschool!

With love,

Beth

Reach for the Stars

2011-05-04T10:42:00.002-05:00

If you'd like to show Reece your support, please consider purchasing a Reach for the Stars note in AMC's upcoming convention program. Nick, Reece, and I will be attending the convention in Kansas City this July. The notes serve as a convention fundraiser for this opportunity to network with other AMC families. The link to the purchase page is below.

Thanks for your support!

http://www.amcsupport.org/KCadsandnotes.htm

Home Again

2011-05-01T21:30:00.002-05:00

We made it back from Atlanta safely and are praising God that we were two hours ahead of the tornado that hit Tuscaloosa. Wednesday night was crazy. We arrived in Atlanta about 5:30 local time, so traffic was insane. Nick had to drop Reece and I off at the hospital at 7:30 for the sleep study, and I still had to feed and bathe Reece and myself. The pizza we ordered was delivered at 7:00, so we were literally cramming pizza in our mouths! We did make it on time, though! After answering several questions, the sleep technician came in and hooked up about 20 wires to Reece's head, chest, and abdomen. He was not a happy 3 year old. Then, she had to put the carbon dioxide monitor in his nose. To top it all off, she wrapped his head with gauze to prevent him from pulling at the wires. He was so mad. I was in tears because he looked so pitiful. So, after doing all of that, they expected him to sleep. After the tech left the room, Reece informed me that he was going to sleep sitting up. He was convinced he couldn't move, even clenching his teeth when he talked. I explained to him that he had to lay down to sleep, and I lowered him down on his back. Now, if you can picture this- as I laid him down his legs went straight up. So, he was in the sitting position on his back. I couldn't help but laugh at that point. After about an hour of staring at the ceiling, he finally drifted off to sleep only to snore, kick, and roll back and forth in the bed. Bright and early at 5 Thursday morning, we were woken up, unhooked from the wires, and told we could leave. By this point, after a 6 hour drive, 1 hour time change, Atlanta 5:00 traffic, a 5 minute supper, and a 6 hour restless night of sleep, this was one tired Mama! Reece on the other hand greeted his Daddy at the hospital door with a big smile and wave yelling, "Good morning, Daddy!!" After resting up in the hotel, we headed to the swallow study back at the hospital. Reece was a champ, especially since there was bacon involved. The study found that everything is going where it should, with the exception of a little bit of liquid being held near his vocal chords. That may be what's causing his gurgly sounding voice occasionally, but nothing to worry about. Also, his gagging is only because he strictly does not like the food, not because of anything not functioning properly.

Lunch at Panera Bread and shopping was next on the agenda until the pulmonologist that afternoon. Mama bought herself a nice new watch, and Reece man loved the new Disney store. He purchased some new Cars sunglasses and 2 new pair of pjs! He would have stayed there all day! The last appointment of the trip was Dr. Kirchner. He still thinks that with Reece's history, he could have a bit of asthma, but he wants to decrease his breathing treatments to once a day after this next surgery in June. According to what the sleep study finds, we may be having Reece's adenoids removed at the same time Dr. P does the wrist and thumb surgery. We'll just have to see. If that's the case, we'll be set up with yet another doctor (an ENT) in Atlanta and have to meet him prior to the surgery. We see an ENT here at home, but one will have to perform the adenoidectomy in Atlanta.

We had dinner at our usual- The Cheesecake Factory, where Nick and I almost lost our cool after a lady asked me to make Reece stop kicking the booth seat. I think she got the point when I told her he couldn't help it because he wears braces on his feet and that's what she was hearing. I wanted to say more... That's not the only rude comment I heard this past week. While at the therapy clinic last Tuesday, another mother asked me in referring to Reece, "Is he expected to live as long of a life as you and I?" I was in utter shock that someone would even ask that! Granted, her child was an adopted child from DHS, and she never knew the pain of carrying a child for 9 months and knowing something was wrong with that child and then being completely out of control of the situation, but still. I mean, come on! How ignorant can a person be? So, FYI... Don't ever ask a mother of a child with special needs that question! NEVER!

Back to Atlanta... we all got a fabulous night of sleep in the hotel and stopped for breakfast at IHOP the next morning. All in all, we had a good trip. Hopefully, we will hear from the sleep study this week. I'm headed to the YMCA to rejoin and start pool therapy with Reece again this week. He's still having trouble with steps, so we are going to focus on that. His Great Uncle Cass and Daddy worked this afternoon and built him some rails for the steps on the deck. Thanks to them he can now get up and down off the deck independently. Thanks Uncle Cass and Daddy!

So, we're back to our regularly scheduled programming this week and adding in some pool therapy among the mix! Hoping all of you have a good one!

With love,

Beth

Easter Weekend

2011-04-26T09:30:00.011-05:00

We started the Easter weekend off with a trip to Kidsfest in Ridgeland. Reece had a blast, especially on the swings! After his 2nd ride on them, he got off and told us, "I think they have those at Lowe's. We need to go buy one." We're still trying to figure out where to put "The Vortex" in our backyard. Thinking it might be against neighborhood covenants :)

The whale ride was Reece's first ride to ever get on by himself. We had to ride that twice as well. And, yes, the sunglasses just add to his cool factor!

What would a Kidsfest be without a carousel?

Saturday was devoted to dyeing Easter eggs and baking cookies. Reece dyed 3 eggs and was over it. His attention span for baking cookies lasted a little longer only because there were sprinkles involved. After the first batch came out of the oven, he decided that it took too much time to "decorate" the cookies. Instead, he resorted to just dipping his cookie into the bowl of cookie. What can I say? The kid's got a point.

Beautiful wrist position :) Gonna show Dr. P this one!

Sunday morning, we woke up and Reece had a chocolate bunny for breakfast. Great parenting, right? After getting all spiffied up, we took some pics and headed off for church. Easter lunch was at Aunt JuJu's and Uncle Carl's house, and Easter dinner was held at Granny's and Papa's house. Easter egg hunting was not high on Reece's list of priorities. After about 2, he had enough. At least we were able to get some pics!

What's next? We're off to Atlanta tomorrow for sleep study tomorrow night, swallow study Thursday morning, and pulmonologist Thursday afternoon. We've had a long day today after 3 therapy sessions, an oil change, and an orthotist appointment. That appt confirmed my fear that the AFOs are not helping to correct anything. In other words, they aren't made very well. When we go back to Shriners in July, we'll be coming back with a script for AFOs to made here. Not quite sure why, but our last two pair of AFOs from Shriners have been duds. A bit of good news... Reece has been discharged from his private speech therapy! Woohoo! One less weekly appointment!

All of the Atlanta results will follow soon!

With love,

Beth

Scars

2011-04-17T12:33:00.002-05:00

With Reece getting his casts off and actually being able to see his feet, the topic of scars has come up a lot in the past few days. Just this week, he had a conversation about them with this occupational therapist. She told me that he pointed them out to her on his hand, touched his left hand, and said "I'm going to have scars on this hand too." I have to admit that a little of my heart cracked hearing this. Reece's little body is covered with scars. There are 5 on his right hand, a 6 inch scar behind each knee, 3 scars on each foot, scars on his little boy parts, scars on his lower belly where the hernias were repaired, a scar on each eye, and a scar from a muscle biopsy. All of this talk of scars made me feel a little down knowing that Nick and I were the ones responsible for making the decisions to put these on his body. Oh, I know that they are to help him, but part of me hates that he'll have these reminders of all he has been through. When I do think about all he has been through, it also makes me think about possible emotional scars he may have. Here lately, well... he's been a challenge. Of course, he's three and some of his behavior comes with the territory, but other things (that I won't get into here) concern me sometimes. So, scars... after Reece's comment to his OT last week, I was telling Nick about it before bed. In fact, it was the last thing I said to Nick before I crawled into bed and pulled out my Journey devotional magazine. I open it up and that day's reading is entitled "A Badge of Love and Beauty." Guess what the topic of the reading was about. Yep, scars. After a brief little story about how a woman was reluctant to ever go to the doctor to have a mole checked out, but felt God finally urged her to do so, she talked about how dealt with her scar from melanoma surgery. Then she goes into what she is trying to portray. She says, "There is Another with scars. His hands were scarred for me, because of me. I've touched those badges of love on His hands, blown away by His amazing love-love greater than all of my sin. His scars-scars that can't be lasered off or covered up-are also an illustration of His deep love for me. So now, on days when I wonder if God really loves me or cares about me or even likes me, I just look at my scar and remember how He showed His love for me that day in the doctor's office. And I look at His scars and know." To say I was blown away by how God was speaking to me was an understatement. With Easter approaching, I had been thinking of the best way to explain what Christ did to a 3 year old. Now, here it was literally in black and white written before me. It was like God was saying, "Use Reece's scars to tell my Son's story." So, I did. The next time the scar subject came up, I told Reece, "You know who else has scars on His hands and feet? Jesus. The people who didn't like him, nailed His hands and feet to the cross. He loves us so much that He died for us. Those nails left scars on his hands and feet, and one day, when you get to Heaven you can ask Him to show them to you." Reece, in his analytical thinking, replied, "Ok. But, I don't want to go right now." I couldn't help but smile and say, "I don't want you to either. It'll be a while."

It's moments like that one that help me to forget all of the other negative thoughts that might be flooding my head. It's times like those when I truly believe Reece has a very specific purpose here on earth. I can forget the arguments, spankings, threats, and difficult moments he's had through the day, and remember that He is a child of God, and my job is to love him here on earth. Some days are a little easier than others, I will say, but God doesn't give us what we can't handle, right? :)

All I hope for now is that scars will be a reminder to Reece. Not a reminder of his childhood, but a reminder of the love of our Savior. I pray that each time he looks at one of those many scars, he thinks about what his mama told him about what Jesus did for him. Then, one day, he'll ask Jesus to come live within his heart. That's every Christian parent's prayer, I think. To know that their child will have a relationship with Christ.

With love,

Beth

Life Interrupted

2011-04-11T14:54:00.002-05:00

I've been trying to get around to posting for about a week now, so I finally just made myself sit down at the computer and type!

The title for this post comes from a book that I am reading for our small group Bible study. I had begun reading it just for my own personal enjoyment in preparation for the author's simulcast at Pinelake last weekend. Little did I know that God would set off a lightbulb and ask me to lead our small group in the study. The book walks through the book of Jonah and talks about how Jonah's life was interrupted by God to be used for a greater plan... His plan. Now, while I have always believed that our life interruption was God's way of using us for His glory, it's not always easy to remember it. Especially, when I'm around other children Reece's age. I get so upset and want to scream, "IT'S NOT FAIR, GOD!!!" This is not what I had planned for my life, and I don't like upset plans. Now, although Reece is only 3 years old, I see how God is using Reece's condition as a "divine intervention." Had it not been for Reece, I would have never even considered getting involved with the special needs ministry at the church much less lead a Bible study for parents of special needs children. Heck, I'm still not comfortable with it at all, but I'm trying to just be obedient to His instruction and hoping, in some way, I leave a lasting, positive impact for His kingdom.

Reece is making good progress and will get his casts off on Wednesday. He's figured out how to climb up into his swingset and go down the slide by himself and also how to climb up and down furniture by himself. His teachers at MMO have said he has become more adventurous on the playground. He's still very cautious around crowds of people and prefers to be held. He's terrified of someone knocking him down, and I think that's why he stays off to himself a lot around other children. We're hoping that's the reason and not something going on socially. I find myself worrying about it a lot because he just acts so differently than other children his age. Don't get me wrong. He's very social... just with older children. I just need to stop worrying about it I guess. I've tried to shut the therapist side of my brain off just to focus on being Reece's mama and not anything else. It's easier said than done. Just this past week, his OT started working on helping Reece pull his pants up and down. Because of his elbows and fingers, he has a hard time reaching behind and pinching his pants. She suggested sewing some sort of loop on the back of his pants to help him. I was immediately overwhelmed. I mean, now we are getting into self-care stuff, and this stuff is important. Not only do his pants need loops, but so will his little underwear. All of that on top of a stubborn 3 year old who does not want to practice anything his mother asks him too, and there's a recipe for major frustration. I have purchased a sewing machine with my birthday money and enrolled myself in a beginner sewing class to learn to use the thing. I figure I had better educate myself on things like sewing loops on pants and hemming pant legs right now. Add seamstress to my resume.

Reece's behavior has been very trying these days. He doesn't mind, doesn't respond to spankings, and has become very bossy. There are some days when I just want to pull my hair out. Oh, and the DVD obsession is still around. I get so tired of dealing with/talking about DVDS, that I wish I had two heads of hair to pull out.

Despite this, Reece still has a sense of humor that keeps us rolling. For example, after spending a week with Moni and Daddy Da, we picked him up and headed home. He started bossing Nick and me around, and Nick responded by saying, "Ok, Reece. I know you've been able to do whatever you want for the past week, but I'm going to go ahead and just rip the band-aid off. You're not going to do that with Mama and Daddy!" Reece starting searching his body and said, "Daaaddy, I don't have a band-aid!" Another example, Nick getting onto Reece again, "Reece, the next time you do that I'm going to tear you up." Reece: "And you're not going to fix me?" Other Reece questions: "When are they going to take my fryoid (thyroid) out?", In response to the waitress asking if we needed anything- "No, I'm fine." After I got off the phone with the nurse about the results of my blood test- "Who's that, Mama?" "That was the doctor's office, Reece." "Dr. Haick?" "Yes. They were calling to tell me that my blood test was ok." "Oh. Are they going to put your blood back in?" Then, I find myself trying to explain to a 3 year old how our body makes more blood and blood is in veins which are under skin... Yes, his questions are exhausting. His speech therapist also made the mistake of teaching Reece that when the big hand is on the 10, his time with her is up. The week after she told him this, they were working at the clinic and he looked up at the clock, starting putting things up, and said, "Your time's up, Mrs. Peggy." Yep, I'm afraid she may regret teaching him that.

Besides trying to raise this unruly child, we've been busy fixing up our backyard, having a garage sale, and celebrating my 28th birthday. Yikes! 30 is getting close!

Nick and I started Weight Watchers today. My goal is to lose about 10 lbs. Let's see if I can do it! My tummy is already grumbling at me!

That's it for today. I'm going to try to be better about taking pictures and posting them. Our computer's memory is pretty much full, so we haven't been videoing or taking snapshots a lot lately. Hopefully I can get some after Wednesday and show you Reece's new AFOs.

Until then, I hope everyone has a wonderful week! And, try to remember that those life interruptions, no matter how big or small, could be God's way of trying to get you on board with His plan for your life! I'm going to focus on that A LOT this week!

With love,

Beth

Dancing Casts

2011-03-31T19:49:00.002-05:00

So, here's Reece in all of his dancing glory. And, yes, this is all being done in his walking casts. He's amazing! Wish he would have been singing the song too. He knows all of the words.

In other news, I had my follow up appointment with the surgeon today, and the pathology report came back with NO CANCER!! Big relief! He also said that during the surgery he was only able to locate 3 of the 4 parathyroid glands you are supposed to have. These glands help with calcium absorption. The pathology report revealed the reason why the 4th one couldn't be found... it was INSIDE of my thyroid gland. I don't really know what that means for me, but I'll be seeing my endocrinologist soon. I'm sure he'll be able to tell me. In the meantime, he ran bloodwork to check my calcium levels and my parathyroid hormone levels. I'll probably hear from those tomorrow.

Reece's left thumb/wrist surgery has been scheduled for June 3. I'm so ready to have that done not only because it'll be the last surgery for a while, but also because of the extreme improvement we've seen on his right thumb and wrist.

Things are finally slowing down. Our next big event is the cast removal on April 13. We pick up the AFOs then also. April 27 is when we head to Atlanta for the sleep study, swallow study, and pulmonologist appointment.

We are so glad to be getting back into a somewhat normal routine around here. Hoping for a longer post soon!

With love,

Beth

On the Mend

2011-03-25T22:18:00.000-05:00

Well, my thyroid is finally gone. It's kinda surreal since I have been in constant battle with it since I was 12 years old. Is it weird that I feel like a part of me is gone? I guess, technically it is! Dr. Haick said that the nodule was larger than originally thought so he had to do a lot of stretching to get the gland out of the small incision. That could explain why I've been so sore! There were also several other smaller nodules on the other side. He said my thyroid probably has not worked for a while. On top of that, I told Nick it feels like I fell down a flight of stairs backwards and hit the base of my skull on the edge of every step. Detailed description isn't it? But that's exactly what it feels like. Apparently it's because of the awkward position I was in on the operating table. My calcium is low (common problem after this surgery) so I'm on calcium supplements. It's so odd because my arms and legs tingle when my calcium has dropped, like when a body part "falls asleep.". It's very irritating! I'm at home now and being well taken care of. Nick is being an excellent nurse, and I'm amazed at how much he actually knows how to do! *wink wink*. I love you, Nick! :) I keep reminding myself not to whine since I KNOW Reece has to have been in more pain than this! I've always been amazed at his pain threshold, but he has gained new respect from me now. Speaking of our little trooper, Moni and Nanny brought him by to see me today after therapy. Let me just say, HE'S BAAACK! Yes, he's up walking all over the place in those orange casts! Which only means one thing... I gotta get my strength and energy back fast! There's no slowing him down now! Example... while scuffling all over the house today he stopped in the living room, threw up all over the floor, backed up away from it, and kept walking. Don't worry. He's not sick. He just has this weird thing where he can't drink orange juice because it makes him throw up. Just started recently, and I forgot to warn Moni about it. Not sure why that happens. We'll have to ask Dr. Denney about it.
That's all I have for now. Just taking it easy around here and getting as much rest as I can because I know I'm going to need it!
Thanks to all of you who have prayed and sent your love! We truly appreciate it!
With love,
Beth

Sent from my iPhone

Mama's Having Surgery Tomorrow...Wait, WHO??

2011-03-22T18:29:00.002-05:00

It sounds so odd saying "surgery" without Reece's name attached to it. But, I sure am thankful it is me and not him. Poor little guy needs a break! So, yes, I get to head to Baptist Hospital at a bright and early 5:45 a.m tomorrow. The plan is for them to take me back at 7:00, but I've been through surgeries with Reece enough to know that is usually not the exact time. Anyway, they'll be taking this blasted thyroid gland of mine out and sending it off for a pathology report. Please send up a prayer that this nodule is benign so that I can get on with my life with one less worry. I've jumped into fixing up our outdoor area in the back of our house to keep my mind busy. The one thing that I hold onto is the fact that I have sent Reece to be put to sleep how many times now? Ten. Compared to what he's been through, this is a piece of cake. Just yesterday I was told that Reece is such an inspiration- always smiling no matter what. I'm convinced that smile is God's light shining through my little man. You can't look at Reece and believe there is no God.

Speaking of Reece, he is in Carthage for the week being spoiled rotten. I'm not sure that can even be done now since he is as rotten as they come. The walking situation in the new casts is slowly picking up. Either yesterday or today he told me and Nick that he wanted to practice walking. For him to express the desire to do it shows us that his confidence is building up a little more each day. By the time he gets the hang of it, it'll be time to have them taken off!

Yesterday was a busy day for him. He had speech therapy at MMO through the school district, then OT (school district), and then PT (private). We have a prescription for physical therapy 2x's a week, so his therapy schedule will be insane! Now that he is in with the school district, he has a double dose of every therapy, with a triple dose of physical. After we get these casts off, he'll begin PT with the school once a week plus the twice a week he will already be getting through Beyond Therapy. I'm pretty sure I'm going to need an extra day added to the week. AND on top of all of that, we are hoping to get back into hippotherapy after I'm recovered from my surgery. So, maybe two extra days added? Yikes. Reece is going to be so tired of this mess (except for hippo, he misses that). My thoughts are to get as much in while he's young because once he begins kindergarten at Pinelake (a private Christian school), his services through the public school district will stop. We'll definitely still be in with Beyond Therapy, but why not double dose while we can? I've said this to my small group at church, if it weren't for church my best friends would be Reece's therapists because I see them all the time! I think I may see them more than my own family! Good thing I think the world of all of them!

So...that's the jest of what's going on around here. Reece is adjusting to walking, I'm having surgery tomorrow, and our lives are revolved around therapy.

Poor Nick. He gets to play nurse this week. Hmmm... this could be fun! :)

I'll try to sign in with an update sometime soon.

Thank you for your continued prayer and support. None of it goes unappreciated, trust me!

With love,

Beth