Be Strong in the Lord: Off with the Old

Saturday, June 20, 2015

Off with the Old

We didn't get the news we wanted on our trip back to Atlanta. After they took off the cast, Dr. P decided the incision was not healed as much as he wanted it to be, so he recasted Reece for 2 more weeks. The good news is we don't have to go back to Atlanta for that because our orthotist here can cut it off and mold Reece for his splint at the same time. Also, we are almost to the end of the two weeks. We have an appointment on Wednesday to get it cut off. Reece was perfectly fine with covering the incision again. He was a little freaked out by the looks of it. We will go back to Atlanta at the end of July for another follow up.

The first few days were a challenge in keeping Reece entertained. I got crazy one day and took him and the 2 dogs on a walk. It was interesting.

He began using his arm more and more.

We did a lot of visiting. Reece's teacher had knee surgery the Wednesday after Reece's surgery. We had to get a pic of them laid up together.

We enjoyed having lunch with Aunt Suzanne, Jamie, and cousins Ally and Baylor.

Lots of sunset watching happens in the summertime!

Off with the old...

On with the new...

With Reece's impeccable luck, we decided to try it on the Georgia Lottery. I'm sorry to say we are still not millionaires.

Just last weekend, our neighborhood had a playground cleanup morning. Reece reunited with one of his old K4 buddies, and before I knew it, Reece was off to play at his house. Not a big deal to some people, but Reece has never had a playdate where I was not there with him. I went back home and sat for 2 hours worried about how he was doing. Would he ask for help if he needed it? After 2 hours, I went to pick him up, and he had a blast! He said, "Mama, we played Legos and ate blueberry biscuits and played in the tent and played video games!" I was so happy to hear all of this! I have prayed for a year that Reece would make friends around our neighborhood so that he could have that fun childhood memory. With this, I began thinking ahead and realized that getting around the neighborhood is something that may be a challenge for Reece. Even when we take a family walk, we have to take his stroller wheelchair for breaks. I entered into research mode. We could get him an electric scooter. I looked at all of the electric scooters I could find online. They all had a hand brake. Hmm... not quite sure Reece would have the strength or the extension in his fingers to operate a hand brake. Plus, balance may be a bit hard for him. Ok, so what about a go kart? A neighbor mentioned her kids use a go kart all over the neighborhood. I did a search online for those. Those are really low to the ground and of course, use a pedal. He might be ok with a pedal, but getting in and out of something so low to the ground would be difficult. I started to get a little discouraged. We just want our child to be able to get around his neighborhood. He can't hand propel his adaptive bike fast enough to keep up with other kids. Why is this so hard???!! Then, I stumbled upon a website called Mobility 4 Kids. It's a company out of North Dakota, and they make go karts for children with disabilities. The go karts are higher off of the ground than a typical go kart, and they are operated by a joystick!! You can check out the video...

I was so excited!! I immediately emailed the contact, and he called me back the next day. Now, I knew that these were not going to be like the price of a Power Wheel toy, but we weren't quite expecting the $6700 price tag. Because this is not something that is really a medical mobility device, insurance coverage is not an option. This is just a fun, recreational thing for Reece to use around the neighborhood, and we don't have $7000 lying around to dole out to cover it and shipping. We have been thinking about it, and we have decided to try fundraising for the cost. We have never fundraised for anything before, so this is new territory for us (and a bit of a pride swallower in asking for help). With all of that being said, the link for Reece's YouCaring site is listed below. We appreciate any support you give!

With love,

Beth

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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."

Saturday, June 20, 2015

Off with the Old

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