Be Strong in the Lord: Eye Check-up

Friday, May 30, 2008

Eye Check-up

Reece visited his eye doctor yesterday, and he can see very well! Dr. Milam said that he was very alert and attentive. He also determined that the cause for the puffiness in Reece's eyes is just a trait he received from Nick. We took Nick's baby pics for him to see because Nick also had very puffy eyes as a child. The doctor said that Nick's left eye was more puffy just like Reece's is! The similarities between the two of them are unreal! If Nassau starts looking like Nick too, we know something weird is going on:)!! Around the house, things are pretty hectic! Reece's love for solid food turned into a hate literally overnight!! The child hates bananas and cereal now! So, we've moved on to pears and apples. I've been pulling every trick I can think of to get him to eat! I've even fed him with my fingers!! (which actually worked pretty well) I might be on to something, though, because this morning while I was eating grits (true Southern girl), Reece was watching me very intently. So, I got his bowl of pears, and after I took a bite of my grits, I gave him a bite of his pears. I was amazed!! He actually ate them and smiled!! It was like he thought he was eating what I was eating!! So, I guess every time I feed him I'll have to stir me up a bowl of grits!! Anyway, you can see he made quite the mess! I just let him roll with it. Eating should be fun!! Naptime is also all over the place! The little guy is so busy learning new things that he just doesn't want to sleep for his usual 2-3 hour naps! I'm lucky if I get an hour! I may be on to something with this too because he now has an iPod player in his nursery for naptime! No... he's not spoiled at all!! He also has his first beach trip scheduled for September! We are so excited! His casts will be off, so he will actually be able to feel the sand and ocean on his sweet little feet! Other than that, it seems as if June 18 (Shriners visit) will NEVER get here! We are so ready to hear what they have to say! I just say a little prayer every day that it is nothing but good news!!

3 comments:

Abby Jenkins said...: He is growing up so fast....it seems like yesterday he was born. I am so glad to hear all the great news of his eyes and hearing being wonderful. I know there are many days ahead, but I hope those days are filled with much encouraging information as you have already received. I am praying for yall!; May 31, 2008 at 12:16 PM
Anonymous said...: Glad to hear his eyesight is great! I love your new mom tricks...I really have a lot to figure out over the next few months! I think you should post a baby pic of Nick so we can compare the similarities between your two men...would be very cute! Y'all have a great week!; June 2, 2008 at 9:53 AM
Angie said...: Reece is a picky eater? I wonder where he got that from?? I seem to remember a little girl that wouldn't eat anything!! Except for Chic-fil-a chicken nuggets, of course.; June 2, 2008 at 1:35 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."

Friday, May 30, 2008

Eye Check-up

3 comments:

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