Be Strong in the Lord: Blessings

Thursday, April 2, 2009

Blessings

Reece has never been an affectionate child, probably because of all the pulling, touching, and stretching he has had done on him since birth. This has always really bothered me because I am a very affectionate person, and all I've ever wanted to do was snuggle and cuddle with my baby boy. Well, here lately, Reece has begun to let down some of those barriers. Maybe it has something to do with his surgery, I don't know. He used to never let me rock him at night, but now he just cuddles up to me, and we rock and sing. Yesterday, he even snuggled with me on the couch for almost 30 minutes. During these newly discovered moments with him, I can just sit and really absorb all that he is. I think about what a true blessing he is. As bad as things seem some days, they could always be so much worse. I'm so thankful that God did not put me in a position where I was parenting a child who had no hope. My child will grow up and live a normal life. Again, what a blessing. We are blessed to have so many friends and family who love us and pray for us. Some days I wonder where my strength comes from. I often forget to pray for it, but then I remember that there are others who are praying for me. Another thing I think about is the fact that Nick has a career that allows him to take off for a week to be with his son before, during, and after surgery. There are so many people out there who don't have that luxury. It's just so amazing to me how God delicately plans every detail of our lives. He places certain people in our lives, sends us in the right direction, and provides for us like no one else can. His plan is perfect for each of us. So, as I sit and relish in these long overdue cuddle sessions with Reece, I can rest easy in knowing that God is taking care of all the details for him. All I have to do is listen to what He wants me to do, do it, and He'll take care of everything else. I can't thank Him enough for what He is allowing to happen in my life!

I also realize that Reece is growing up really fast now. Since his cleft palate repair, his babbling has become more frequent, and you can really tell that he is experimenting with some new sounds. His friend, AnnaLea, has a birthday party this weekend, and yesterday we went to get her present. We were talking about it while I was getting him dressed, and as plain as day he says, "Anna." I was able to get him to do it one more time so Nick could witness it, but that was it. I was so proud of him!

He had PT twice this week to make up for missing last week. Katie was watching how he balances himself, and he is so close to being able to stand by himself. She is looking into getting him a Kaye walker like the one Haley Rudder uses. Hopefully, we will get measured for that soon and get him practicing. It should be interesting to teach Mr. Independent how to use it, but we'll get there!

So, we head back to Atlanta a week from today for a follow up with Dr. Williams. I know... long trip for just that, but we do what we have to do. Plus, we plan on taking Reece to the Georgia aquarium this trip. We've tried taking him the two other times, but we have just run out of time. I'm determined to get there this trip!

Mama is continuing to do well. She seems a bit down because she finally snapped out of the delirium, and, I think, has realized how long she's been there. They have thrown out a timeline of 7-10 more days there and possibly on to Methodist Rehab. That is just a very tentative plan and depends a lot on how she progresses in her therapy.

Oh... I wanted to mention this awesome book I discovered at Barnes and Noble yesterday. For all of you mothers of toddlers, you have to buy The Toddler's Busy Book by Trish Kuffner. It's jam-packed with ideas for games and homemade toys for kids age 1-3. I wish I would have had it for when I was teaching school. I could have used some of the stuff in there for activities with my 1st graders. I've already made the Easter egg maracas and the wave bottle, and both have been huge hits with Mr. Reece man! Just thought I'd share!

Anyway, I hope everyone has a great day! I'll post again soon!

With love,

Beth

1 comment:

Abby Jenkins said...: We have a friend at Methodist Rehab. Just wanted to say he has had excellent treatment and communication with the doctors there. His health has improved tremendously, however, he hasn't had heart problems, he has some kind of syndrome(just hit him all of the sudden at work one day) that paralyzes your body much like a stroke, so he has had to relearn to do everything. I hope your mom continues to get better.; April 3, 2009 at 4:48 PM

What is Escobar Syndrome?

This is all according to our geneticist.

Escobar Syndrome, or Multiple Pterygium Syndrome, is a form of arthrogryposis multiplex congenita. It is an autosomal recessive genetic condition characterized by excessive skin webbing, joint contractures, and scoliosis. Other features include intrauterine death, congenital respiratory distress, short stature, craniofacial dysmorphism, ptosis, low set ears, and cryptorchidism in males. The gene mutations are caused by transient inactivation of the neuromuscular end plate. In other words that are not much more clear, Reece did not start moving properly in the womb until his gamma receptor on his neuromuscular junction was replaced with the epsilon receptor (toward the end of the pregnancy). Severity varies significantly among families. Early physical therapy and surgical interventions can help the outcome.

For an even more detailed description read here.

So what applies to Reece? Well, Reece's features are as follows:

* Bilateral vertical tali in feet (surgery May 2008, January 2011)

* Knee flexion contractures (surgery May 2009)

* Hip contractures

* Mild scoliosis

* Short stature

(2 years, 9 mos: 32 inches)

(4 years: 37 inches)

(7 years: 45 inches)

* Short, webbed neck

* Cryptorchidism (undescended testicles) (surgery Feb.2009)

* Inguinal hernias (surgery Feb. 2009)

* Hypospadias (surgery Feb. 2009)

* Low set ears

*Ptosis (droopy eyelids) (surgery March 2009 and October 2013)

* Partial cleft palate (surgery March 2009) (fistula repaired October 2011)

* Wrist flexion contractures (surgery on right October 2010) (surgery on left June 2011)

* Radial and ulnar bones fused at the elbow in both arms with webbing and joint contractures (surgery on right elbow contractures via biceps lengthening and z plasty) May 2015)

* Thumb in palm (surgery on right October 2010) (surgery on left June 2011)

*Finger contractures

I have debated for a very long time whether or not to post all of this on here. It's very hard for me to sit here and list all of my baby's abnormalities. Plus, I don't want people looking at Reece trying to pinpoint every feature of Escobar on him. However, I'm getting more and more connected with other Escobar families around the world. I know that any information I find is very helpful, so I want to maybe help other families affected by this syndrome.

2 Corinthians 1:3-11

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."

Feel free to contact me at beth.barham@gmail.com.

Ephesians 3:20

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.

Reece's Medical Team

Pediatrician-- Dr. Sam Denney, The Children's Clinic, Flowood, MS
Hand and Upper Extremities--Dr. Allan Peljovich, Atlanta, GA
Oculoplastic Surgeon- Dr. Joseph Walrath, Atlanta, GA
Lower Extremities-- Dr. Jeffrey Sawyer, Memphis, TN
Opthamology-- Dr. Kevin Kosek, Madison, MS
Pediatric Pulmonologist-- Dr. Joseph Majure, University of Mississippi Medical Center, Jackson, MS
Neurology-- Dr. Amanda Witt, University of Mississippi Medical Center, Jackson, MS
Genetics-- Dr. Omar Abdul-Rahman, University of Mississippi Medical Center, Jackson, MS
Pediatric Dentist-- Dr. Kyle Reed, Dogwood Pediatric Dentistry
Plastic and Craniofacial Surgeon-- Dr. Joseph K. Williams, Atlanta, GA
Ear, Nose, and Throat-- Dr. Jeffrey Carron, University of Mississippi Medical Center, Jackson, MS
Gastroenterologist-- Dr. Sara Rippel, GI Associates, Flowood, MS

2 Corinthians 12:7-10

"To keep me from becoming conceited because of these surpassing revelations, there was given me a thorn in my flesh, a messenger of Satan to torment me. Three times I pleaded with the Lord to take it away from me, but He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weakness, in insults, in hardships, in persecution, in difficulties. For when I am weak, then I am strong."

An Essay that Touched Me

I don't think that I am a patron Saint, but the words of this essay really struck something with me. It helps me to remember that God has chosen me and Nick to be Reece's parents for a very special reason.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Thursday, April 2, 2009

Blessings

1 comment:

Who Is Reading about Reece?

Keeping Up With...