Be Strong in the Lord: Big Day Tomorrow

Tuesday, November 30, 2010

Big Day Tomorrow

Tomorrow is our big appointment day at Shriners. I feel like I'm a lawyer going in to plead my case. I've got a folder with pictures, letters, and articles to take in to show Dr. McCall. Nick can't go with us since tomorrow is December 1. He's got to work. The first of the month is always a busy one for pharmacies. Luckily, I still have back up going with me, my sister Suzanne. Please just keep us in your prayers tomorrow. Pray that if Dr. McCall doesn't feel as if he can perform surgery to correct Reece's feet, then he will be humble enough to say so, so that we can head up to Seattle.

Poor Reece had a falling accident at Mother's Morning Out yesterday morning. They called me to come get him early because he had tripped on a chair and hit his mouth on the corner of a table. Apparently, there was a lot of blood and tears, and with good reason. When I got there, his lip was swollen three times its normal size and his teeth looked like there was some major damage. I called Dr. Wren, Reece's dentist, and they got him in within an hour. Praise God! Dr. Wren said that Reece was extremely lucky because his lip and gums took the brunt of the hit. There were no loose teeth or bone fractures. He still has a pretty nasty looking lip (obviously looking at the pic below), but he seems to be handling it pretty well. He's been on a soft food diet since yesterday, and his gums look MUCH better!

We had a family fun day today. Nick had today off, and after going with him for a haircut, we hit Best Buy to purchase a Garmin GPS. We've had a GPS on our iphones, but it's so inconvenient to use. We use GPS a lot when traveling in Shreveport and Atlanta, so I think it was a worthwhile purchase. After shopping, we headed for a late lunch at P.F. Chang's and then on to the movie theatre for "Tangled." By far the best kid movie I've seen in a while! Takes me back to the Disney movies I watched growing up. Below is a pic Nick snapped of me and Reece while waiting for the movie to start.

So, off we go to Shreveport at 8:30 in the morning. Reece's appointment is at 1:00, and I believe xrays of his feet and spine are scheduled. If you glance up and see 1:00 on your clock, say a little prayer for Reece's feet, please. We're totally depending on the Lord to guide us where He wants us to go with this situation.

I'll post Thursday to let you know how it all goes.

With love,

Beth

3 comments:

Suzanne Rudder said...: Will be praying for you all!!!! Safe travels!; November 30, 2010 at 8:51 PM
The Long Family said...: I'm so glad you have a back up to go with you. Have a safe trip. I'll be saying a prayer.; November 30, 2010 at 10:58 PM
Meaghan said...: I hope you have a safe and worthwhile trip!!! Praying for a good outcome! Glad Reece's teeth are ok! You and Nick should def try to get down to NOLA....it was our first trip since college, and we loved it again!; December 1, 2010 at 8:46 AM

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."

Tuesday, November 30, 2010

Big Day Tomorrow

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