Be Strong in the Lord: The Trouble with Doctors

Monday, April 19, 2010

The Trouble with Doctors

Is that you never whose opinion to trust when there is a conflict between them. Last week, we had a follow up visit with Dr. Carron, Reece's ENT. Dr. Carron has been dealing with Reece's ears, and he was the one that put the tubes in. Originally, he was also monitoring Reece's cleft palate until he referred us to the pediatric craniofacial surgeon at UMC. After meeting with him, we decided to take Reece to Atlanta to work with Dr. Williams. So, Dr. Williams was the one that repaired the cleft last March. Everything seemed to be going well until I noticed sometime several months later that I still could see a little hole in the roof of Reece's mouth. When I mentioned it to Dr. Carron, he said that it appeared the repair had not healed completely and to mention it to Dr. Williams the next time we saw him. So, I did. He looked and said that he saw it, but it was just a split in Reece's uvula (hangy down thing) and was nothing to worry about. So, fast forward to the latest visit with Dr. Carron last week. He looked in Reece's ears and commented that everything looked great. Then he casually asked how his cleft was doing. I told him what Dr. Williams had said, and he just looked down and raised his eyebrows. So, I ask, what is your opinion? He responded that he thought the split goes up further than just the uvula. As much as I love Dr. Williams, I tend to agree with Carron. The times I've noticed the "hole" it does seems a little high up. So, what do we do now? Well, from what we understood, we wait until Reece is around 3 and see if his speech is affected. Dr. Carron seems to think that Reece's voice if very nasal and that could have something to do with the palate. So, we wait. He's already getting speech, so I don't know what more we can do. Unless this all means he will have to have another palate surgery in the future. I must say, it certainly has not hindered the amount of speech Reece has nor his ability to repeat anything anyone says! The child talks nonstop.
Speaking of possible future surgeries (which makes me cringe just typing it), I have been very concerned about Reece's right foot turning out. Now it seems that the more he is up walking on it, the more it is turning outward. I know Dr. Robbins told us that he may have to have more surgeries on his feet because they were so severe. Dr. McCall at Shriners has also told us that the surgery on his feet wasn't a complete success. I've called Beth, Reece's PT, to the issue, and we are watching it closely. Our hope is that when we go back to Shriners in June, they can just fit him for some more KAFOs that will help to turn that right foot back in, avoiding surgery altogether. Let's pray.
All of this has gotten me down a little. I guess in my little mind, I thought once we had a surgery on something, it was "fixed" and we didn't have to worry about that body part any more. This is all bursting my bubble. I'm going to just pray that the Lord will fix these issues, and Reece won't have to endure any more surgeries, especially one on his feet. What a setback that would be. Please join me in praying this for Reece. We've all seen what the power of prayer can do, and the answers God gives us as long as we have faith.
With love,
Beth

1 comment:

Suzanne Rudder said...: Haley & Reece are like two peas in a pod. She has the very hypernasal voice, due to submucous cleft (which sounds like what Reece is dealing with). We have to go thru a sleep study, possibly removing tonsils, & then address the cleft. Also, Haley's right leg was longer so she would let that leg stick out further and walk more on the side of her foot to "accomodate" - that foot started turning out more since that's the way she held it....making it more difficult for shoes, but it seems to be getting better. Hopefully you can just get him a lift on his shoe - simple fix. Hugs to you! I understand your frustration to a T. Call me if you need to!; April 21, 2010 at 12:59 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."

Monday, April 19, 2010

The Trouble with Doctors

1 comment:

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