Be Strong in the Lord: 18 Months!

Wednesday, July 15, 2009

18 Months!

That's how long little Reece has been in our lives (not counting the 9 months I carried him:) We went for his 18 month check up today, and it went well. According to Dr. Denney's questions, Reece is developing right on target. He has 6-12 words in his vocabulary, easily, and does all the things he should cognitively be doing. He only weighs in at 18 lbs 12 oz, but that's ok. He'll probably always be below that 1st percentile. They also measured him at 28 3/4 inches long. That means he's gained about 2 inches since his knee surgery. He did have to get one shot, and of course we went to Target for a toy afterwards. After lunch at Broad Street Bakery, he's sacked out in his crib. Our supper club group is celebrating our 1 year anniversary tonight at Amerigo's, so I hope he gets a good nap! Nick and I will also be celebrating our 7 year anniversary this upcoming Monday. Reece is heading to Mama Kat's house Friday, while Nick and I go out to eat Friday night and attend Nick's 10th highschool reunion Saturday night. Yes, we have quite the busy weekend.

So, I want to catch you up on some things that Reece has been doing lately. Some of them may be repeats, but he's growing up so fast that I just have to share.

#1 Sings "Twinkle Twinkle Little Star" over and over again in perfect tune

#2 Mocks us telling Ridley "no" while shaking his finger at him

#3 Spanks our hand after we spank his for misbehaving (not exactly a good thing, I know)

#4 Has begun to feed himself with a spoon ( what a blessing since at birth we never imagined this happening)

#5 Can tell you how old he is by holding up 1 finger

#6 Waves and says "bye" (with a southern drawl)

#7 Has begun trying to count to 5 on his fingers

#8 Tells "jokes" (This consists of a lot of babbling and cackling afterwards.)

#9 Can mock the Beethoven song that is on one of his Baby Einstein dvds (mah, mah, mah, maaahh)

# 10 Constantly babbles with new sounds coming out every day

I'm sure I've missed something, and I definitely need to post a new video. He's becoming such the little man, and we are so grateful to have him in our lives!

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."

Wednesday, July 15, 2009

18 Months!

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