Be Strong in the Lord: Just When I Need It...

Wednesday, July 22, 2009

Just When I Need It...

We just rolled back into Brandon about an hour ago. We took off for Atlanta yesterday because Reece had an appointment with the craniofacial team there this morning. Yes, a whirlwind two days with 12 hours spent on the road with an 18 month old, but I will tell you why it's worth it. Every time we go to Atlanta, we stay at the same Comfort Suites. We've been so many times this year, the people at the front desk recognize us and always welcome us with a big smile. Last night when I was getting ready to take a bath, I realized that we only had 2 bath towels in our room. Knowing we needed at least two more, I headed back to the front desk to ask for a couple more. After handing me the towels, the lady who is one of the ones who always remembers us, proceeded to tell me what a joy it was for her to see us walk through the front door. She said, "Your baby is so adorable, and he makes me realize that whatever I am going through, I can get through it. Every time I see y'all, I just stop and tell the Lord that I know He will get me through those bad times in my life. Your little boy is such a blessing." So, there I stood in the lobby of the Comfort Suites in Atlanta with big tears in my eyes as I listened to a complete stranger tell me how my 18 month old miracle has blessed her. Nick and I have always said that we want Reece to be an inspiration to others, and he already has so many times in his short life. As I stepped back on the elevator, I leaned my head back on the wall and thanked God one more time for entrusting us with such a beautiful responsibility, raising one of His angels. Amazing stuff, huh? Ten years ago, I would have never thought that boring old me would come to have such a fulfilling life. God truly is good!

As for Reece's appointment, his cleft palate has healed well as well as his eyelids. Dr. Williams wants to see him back in a year. The speech pathologist is still a little concerned about his speech and said that it wouldn't hurt to get him back into speech therapy. The way she put it was it was our tax dollars at work, so why not use them for Reece? While Nick and I seriously don't think Reece needs speech therapy at all, we will always do everything we can for him, so I guess we'll be scheduling some speech therapy sessions soon. On a side note, Nick did let the SP listen to a clip of Reece saying "big mama" on his iPhone. I have no idea where the child picked his 1st phrase up, and while I don't like him looking at me and saying "big mama", when he laughs hysterically afterward I could really care less. After all, I guess I do look pretty big to him! Speaking of the iPhone, Reece can effectively use one now. He had mine last night on the hotel bed just tapping away. Then, on the screen where all the album art is, he knows how to slide his finger across to scroll through. Children definitely learn through imitation! I need to get it on video because it is priceless!

Back to the appointment... the pediatric dentist came in and said that Reece's teeth look great. However, we should expect for him to get braces around age 6. The inside of his mouth is shaped more like a "v", so his teeth won't have enough room. Right now, everything looks good, but I guess when his permanent teeth start coming in it will be more of a problem. Finally, we had Reece's hearing checked again. Last time they checked it, the results showed mild hearing loss. However, both of his tubes in his ears were blocked, so they wanted to retest after Dr. Carron (the ENT) replaced the tubes. As you know, he had this done back in February along with the urology surgery. I am so thrilled to say that after being tested again today, Reece scored absolutely normal! Whew! I was a little nervous about that, but it's behind us now.

So that's the summary of our Atlanta trip. We're back home and exhausted. Reece and I will head to the vet to pick Ridley up in the morning. I think I'm attached, when we got home I really missed him! Nick was excited that he could sit in his chair without getting nipped. Aww... I kinda miss the nipping! I'm sure I'll be sorry I said that this time tomorrow night:)

Take care!

With love,

Beth

2 comments:

GerryC said...: Gosh - Reece is such a little inspiration to us all. Isn't it just lovely when compete strangers even notice how special our children are! Delighted to hear that his hearing is so great too. Lots of love from Car, Ger and a much recovered Ashling X0X0X0; July 26, 2009 at 4:46 AM
Meaghan said...: Glad y'all's trip went so well! Good news all around...from the doctors and from complete strangers! :) Take care!; July 30, 2009 at 4:21 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."

Wednesday, July 22, 2009

Just When I Need It...

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