Just the Two of Us

Reece and I enjoyed our day today. We didn't have a whole lot to do, so I actually was able to hang out with my favorite kid at home. We played with play-doh (where I incorporated a little finger strengthening therapy), had a light saber battle, and made some oobleck paintings. Oobleck, for those of you who don't know, is a cornstarch and water mixture that has a liquid form but quickly turns to solid. I don't know the exact science behind it, but I do know it kept my hyperactive child engaged for over 30 minutes! I was feeling all proud of myself because I was able to get some occupational therapy, some physical therapy (wearing weights on his legs), and a little sensory therapy in all in one day! That's a huge accomplishment for me because I am always busy around the house. At the end of the day, my house looks like a disaster zone, but I am trying really hard to look past that.

After lunch, we headed to Kindermusik and then came home to play outside with bubbles. After a trip to Lowe's and a consignment store to drop off some clothes, we ate supper at Penn's and went for a gas station candy run.

I wanted to blog about all of this because it's so rare that I can really spend the quality time with Reece that I want to. Today was an awesome day for us. I really hope he will always remember these kinds of days with me.

In other news, after receiving the most awesome massage of my life yesterday, I talked with the massage therapist about the possibility of her working with Reece. She was more than willing to do it! So, after doing some research, our 4 year old son has his first massage appointment in a couple of weeks. She'll be looking at Reece and deciding which technique would be most beneficial for him. One technique she mentioned is the cranial release technique. To be quite honest, I have always looked at alternative medicine as a big joke. However, after what she did to release my shoulder blades yesterday, I'm definitely having second thoughts. The name "cranial release" made me a tad nervous when thinking about having it performed on my child. But, I researched it, and basically it's just very light pressure (like the weight of a nickel) on parts of the skull. Apparently, it is supposed to release tons of tension in the body. But, like I said, there's a couple of other options... Thai yoga massage and myofascial release (which his PT has done with him in the past). We'll find out what works best for his little body when we go in a couple of weeks.

Bless his sweet little heart... Yesterday he was down for a nap when I went for my massage. Nick said when he woke up, and Nick told him where I was he asked, "Daddy, is Mama ok?" Nick said, "Yes, baby. She just went to get a massage." Reece thought for a minute and asked, "Is it like my massage?" It breaks my heart that he equates his "massage," which is what we call his stretching, to something being wrong. So, today, I made a really big deal about how good I feel after having my massage and how he'll be getting one just like Mama in a couple of weeks. Hopefully, he'll begin seeing it as a good thing! His Mama certainly does!

Now to leave you with a couple of funnies for the day...

- On the way to Lowe's, Reece said, "The sun's not out today. What's today?" Me: "Today is Thursday." Reece: "Oh, well, Sunday is the day the sun comes out."

- A nice man who works at Lowe's presented Reece with a Lowe's builder apron with a place for his name. When we were pulling out of the parking lot, I remarked how nice it was of that man to give him the apron. Reece said, "It was nice. What is it for?" Me: You wear it when you are building things so that the dust won't get on your clothes." Reece: "What about my shoes? What do I wear on my shoes to keep the dust off?" Me: no reply

My son is going to be quite the deep thinker (and worrier, unfortunately). I can't imagine where he gets that from...

With love,

Beth

Out of the Mouth of Reece

I try so hard to remember all that Reece says, but he says so much! Here are a few snippets I did manage to remember.

- While I was placing his new wall decal on the wall that quotes Walt Disney "If you can dream it, you can do it.", I try to have a moment with Reece and explain that if you can dream it you can do it. His response? "Do what, Mama?"

- "Papa, you're not crazy, you're ridiculous!"

- "Mama, your singing is beautiful, but I don't want you to sing right now."

- "Whew! My belly is full! It's starting to look like Papa's!"

- "Reece! Come on! It's time to take a bath!" "Well, I'm sorry, Mama. I don't have a chance right now."

- "Mama, your hair looks terrible!"

- "Mama! Mama! The weatherman just said that it was going to 'no' today!" Unfortunately, I had to explain that Al Roker was talking about Michigan and not 70 degree Mississippi.

- "My cold is going to be here until March."

- I bought a Yoga for Kids dvd thinking I could get some stretching done in a fun way. After like 3 poses he says, "I'm sorry. I don't want to do it anymore. I'm tired. You just do it, and I'll watch." Afraid he gets his exercise motivation from his mother.

- "Reece, you've got to learn how to write your name so you can learn to read. You don't want to learn how to read?" "Nope." "You don't ever want to learn how to read so you can live by yourself one day?" "Nope." "You're just going to live with Mama and Daddy all of your life?" "Yup." "Ok, well, I guess you won't ever be able to drive or go to Disneyland by yourself." Pause. "Well, I'll just practice writing my name one time."

- And, my favorite... Moni told me he said this while at their house this past weekend. He climbed the stairs behind her, and she didn't know it. They had a talk about why he couldn't climb the stairs by himself because he might fall. His response? "If I fall, God will catch me." Now, if we could all just believe that truth!

With love,

Beth

Recent Pics

Trip to the Reservoir for a snack

And to let the dogs run

Playing at Winners Circle Park

Showing off his Darth Maul light saber (It's five feet long!)

Preschool field trip to Mazzio's Pizza!

Lots of concentration went into this pizza!

Making his ham, pepperoni, and 3 black olives pizza! He's never eaten a black olive in his life!

Listening to his instructions

Three of the silliest boys I know!

The early arrivals posing for a pic before the fun began

Congenital Radioulnar Synostosis

The technical term for what is going on with Reece's shoulders is the title of this post because this is driving me crazy! Before I begin my worrywart rant, let me explain what it is. In simple terms, it is where the radius bone and ulna bone in Reece's arms fused together at the elbows. You can read all of the specifics by clicking here. This is what prevents Reece from turning his hands palm up and from completely straightening his elbows. Wouldn't you know that this is not even a common thing with Escobar syndrome? It happens occasionally with the syndrome. Gotta love being a part of that occasionally!

Now why is it driving me crazy? Every day we work with Reece on pulling his pants up and pushing them down, and every night we walk him through undressing himself. What should take 2 minutes takes 10, and it's a really hard thing to watch him struggle. Try pulling your pants down with your legs bent, your elbows bent, your wrist bent and unable to turn palm up, and your fingers bent. Not an easy task, and it's no wonder he gets so frustrated. He wiggles, he shakes, and he shimmies, but is so difficult for him. He just can't reach far enough back to grasp the back part of his underwear and pants. We haven't even started working on the shirt thing yet! And, needless to say, I don't think he even knows he has the option of wiping himself in the bathroom.

Nick and I have been very proactive in surgery for Reece, so why haven't we done anything for this? Well, we've been told by 3 orthopedic surgeons that there is a surgery for it but the deformity often recurs. If you notice the date of the linked article above, it was just updated like 5 days ago. It seems to me that there is actually some research going on about how to surgically correct this. I wouldn't worry about it so much if I saw improvement, but so far we haven't. His shoulders are super tight as well, and as I mentioned before, have begun slumping forward more. His private OT told us on Tuesday that the clinic has purchased a kinesiotaping kit, and she is going to begin taping Reece's shoulders in the next few weeks.

Nick and I have always said that we wanted to get as much surgery done as we could before Reece began kindergarten. Our deadline is fast approaching, and it honestly makes me nervous. Realistically, I know that Reece is probably not finished with surgeries. But, I hate the thought of having to take him out of school for a week at a time to have a surgery. For some reason, we did not have a follow up appointment with Dr. Peljovich, the upper extremity surgeon, so when I made Reece's craniofacial team appointment this morning, I went ahead and scheduled one with Dr. P while we are there in Atlanta. I just want to talk with him about my concerns regarding Reece's elbows. Those appointments are in June.

I know, like everything else, Reece will probably adapt. It's just so hard to watch him "know" what he's supposed to be doing, but not being physically able to "do" it. He won't go to the bathroom at school unless he absolutely HAS to because he's so self-conscious of the help he needs to get his pants down. I'm sure he notices the other kids doing it by themselves, and he is increasingly becoming more aware of his differences. We've begun talking in small bits about things being a little more difficult for him. I've told him that God makes everyone special, but He made him extra special because He has big plans for him. I figure that's all the explanation a 4 year old needs right now.

Ok, so I've gotten all of this off of my chest now. I feel better.

Big preschool field trip tomorrow to one of Reece's favorite places... Mazzio's Pizza. He's so excited about getting to make his own pizza and then eat it. He'll be headed to Moni and Daddy Da's tomorrow after school. I'll have the rest of the afternoon to myself, then I head to the Luke 14 dinner sponsored by Joni and Friends. Saturday will be a date day for me and Nick, and we plan on doing what we enjoy most... eating out at a nice restaurant. Sunday, we'll pick up our man after Moni and I attend a shower in Meridian, and then we'll start all over again!

Busy weekend for sure!

Hope yours is blessed!

With love,

Beth

In Prayer About This

Click on the links to see what we're up to. :)

Erick's Story | Blog | Joni and Friends

If I go, it will probably be on this trip. Please pray for us (as Nick as now expressed interest in going) as we try to make this decision.

Wheels for the World - Peru (Lima) | Wheels for the World | Joni and Friends

With love,

Beth

All Things Medical

It seems like we have received lots of medical information here in the last couple of weeks, and I need to type it all out to remember.

Where to begin?

Orthopaedic: Dr. Robbins went to the convention in California, and unfortunately the doctors he wanted to look at Reece's X-rays were not there. So, he's emailing them the information. My job? Keep bugging him through email until he hears back from them! :)

Hearing: We went on Wednesday to have Reece's hearing evaluated here at UMC with Reece's ENT. The good and bad news is that the test still revealed Reece has mild conductive hearing loss in both ears, but Dr. Carron seems to think that the ear tubes might be causing it. I am kinda confused about what all of this means since they have said that Reece will probably needs tubes until age 7 or 8 because of the cleft palate. What I don't understand is why he still has to have them now that the palate has been repaired. We are just praying that his hearing will improve once they come out.

Speech: On the note of hearing, I talked with Reece's school speech therapist today after school. She did a developmental screening on Reece today, and he's doing really well. He is missing some of the "sh" and "th" words because of the conductive hearing loss, but we will continue working on this. Other than that, he is really doing well, even passing some of the 6-7 year old tasks. We are still waiting on Medicaid approval for the oral motor therapy he was privately evaluated for. Dr. Carron told us that he definitely needs this type of therapy, which will help strengthen the muscles in and around his mouth.

Physical therapy: Reece is still getting physical therapy through the school district once a week for 30 minutes. He has kinda hit a standstill in developing his gross motor skills. We halted private land physical therapy in November in order to get him into aquatic physical therapy. Well, we've been around and around with Medicaid trying to get him approved for the aquatics. Don't even get me started on Medicaid. Sometimes I wonder if they ever even read any of the cases before they make a decision. Right now, Reece is still unable to transition for floor to standing and vice versa without some type of prop. The difficulty he has picking objects up from the floor has only increased, and the PT thinks he may be because he has had a growth spurt. You see, his legs have gotten longer, but his elbows are still stuck in the same position. On top of all of that, his quads are weak, and his hamstrings are tight. Just makes for a big mess for the little guy. I have really got to start stretching and putting weights on him more around the house. I just get stuck in our "normal" that I sometimes fail to see where he's lacking until someone points it out to me. Steps are another major obstacle for him. Unless he has something to hold onto, steps that are deeper than 2 inches are impossible for him.

Occupational therapy: Well, if you had asked me about OT around 9:00 this morning, I would have been ecstatic. I received a phone call Reece's school OT saying that Reece had met all of his goals, and she was going to have to make him some new ones. According to her, he was cutting, writing his name, pushing his pants down and pulling them up, and buttoning- INDEPENDENTLY. While she was telling me all of this, my response to her was "really?" He hasn't been doing of this at home without assistance. Long story short, after talking with his private OT and the school speech therapist, we are all in agreement that he has not independently mastered these skills. I don't really know why the school OT would tell me all of this, but I do know that we don't want her moving on to more difficult goals when he hasn't mastered these. Hopefully, we'll get it all sorted out. Self-help is a big concern for me right now, although I know he's only 4.

Vision: Not much going on here, except that more than one of his therapists have noticed the way he holds his head back when he walks. Both his opthamologist and the plastic surgeon have told us that another eyelid surgery is in the near future. We think Reece is compensating for the droopy eyelids by tilting his head back to see more. The surgery would involve lifting one of the eyelid muscles up. Bless his heart. The one he had when he was just over a year old left his little eyes so bruised he looked like a beat up boxer. I hate to see him go through another one of these, but I don't want him to have problems with his vision.

General: The Friday before the big RSV hullabaloo, Reece saw his pediatrician for his 4 year checkup. He weighed in at a whopping 25 lbs and measured 37 inches tall. His weight puts him in the .03%ile and his his height is in the 3.03%ile. He's a big one, isn't he? Of course this is all just a part of Escobar Syndrome. The heaviest adult I know with it weighs 75 lbs, and the tallest adult is 4 feet. I have put him back on Pediasure once a day just to see if we can gain a little meat on his toothpick legs. Because he wears these blasted AFOs all the time, his little leg muscles are just practically nonexistent. Nick tells me not to expect the Pediasure to really help, but I'm giving it a try anyway.

Cognitive: This has never been an issue for Reece. He's really learned so much because he's been in therapies since birth. We received his K3 progress report this week and he's fully mastered colors, recognizing the alphabet, recognizing numbers (except for 9), playing with others, feeding himself, and washing and drying his hands. What does he need to work on? Ha. None of it came as a surprise- using art materials, coloring, writing, being happy and secure, taking turns, paying attention and sitting for short periods of time, willingly putting away toys, accepting behavioral limitations, and accepting the authority of the teacher. Little did I know just how "strong-willed" the name William meant!

So there's the summary of all things medical. I know Reece has to get so frustrated with some of the things his brain tells him to do, but his hands or legs can't do. I can't imagine how that must feel. Nick and I will just continue to encourage him to work hard and use his surroundings to help him. Surely, that strong will can be put to some GOOD use!

With love,

Beth

The attempt at a class Valentine's Day picture.

Listening to a Valentine story

He wasn't too thrilled about having his picture made, but he looked so cute in his white button up Lacoste shirt and khaki pants. Mama couldn't resist!

When Acting Causes Change

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!

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

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

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