Here I Go Again

Worry, worry, worry!  I'm beginning to think that the less I know, the better.  If you've noticed, I have joined the AMC (arthrogryposis multiplex congenita) support group and provided the link below.  Since joining, I have discovered that there is a 2 year old little girl with Escobar in NY, an 18 year old girl, and a 30 year old woman.  Really surprising to hear of these other people!  With the syndrome being so rare, I would have never imagined I would know of that many people with it.  I have been talking to the 18 year old, Rebecca, and she has a rather severe form of the syndrome.  She was born with scoliosis that progressively became worse and has affected her lungs.  Sometimes when she is sick she requires extra oxygen.  She is the nicest girl and has been very supportive, answering multitudes of my questions.  But for some reason, I don't feel any better.  It almost makes me worry more, afraid that the doctors have missed something.  You know, I want to stay informed an on top of things, but at the same time it scares the living daylights out of me.  I begin to pour over test results, trying to analyze words and phrases that I can't even begin to understand.  I frantically search the internet for Escobar cases that don't have any respiratory involvement.  I desperately study journal articles that doctors have given us, only to become more upset by the horrendous pictures that some of them show.  I don't understand why I do this to myself.  I want to just take one day at a time, trust the doctors, and enjoy my precious baby boy.  Then, a day like this sneaks in.  I watch him play and feel so sorry for him.  But, he's the happiest baby I've ever seen.  If he knew what I was thinking, he would probably tell me that HE'S not worried about anything.  To him, this is just how life is.  If I could only steal a little of that innocence so that I could stay positive.  

He had his 9 month check up today, and everything went well.  He weighs 15 lbs 7 oz with his braces and is 24 inches long, both in the 1st percentile for his age.  A little discouraging, yes, but it's something we will always face.  Dr. Denney remarked several times that Reece definitely had a personality on him.  I just wish I could capture all of the facial expressions he makes on a daily basis.  He also told us that he could tell that Reece was very smart just by the way he is doing things.  He is improvising not being able to use his thumb completely by using his index finger and middle finger to pick up small objects.  He also likes to explore things a lot by using his middle finger ( a habit which might not be so good later on!).  Dr. Denney changed his formula, and we are going to slowly stop taking the Prevacid for his acid reflux.  That seems almost non-existent now.  Reece also started eating meats today.  Chicken is our first test.  He seems to like it.  Imagine that... a kid who likes chicken:)  

This past weekend was a very busy one for Reece Barham.  Of course, Saturday was the shower that I held here at our house.  All of my boys were kicked out (with the exception of the furry one who was locked in the bedroom).  Reece went to the country with his daddy to spend some time with his Great Uncle Mac and then with his Papa.  Sunday was spent celebrating his great-grandmother's 78th birthday at the Cock of the Walk.  I may have started something, but I poured some sweet tea into Reece's sippy cup.  He maintained a death grip on the sippy cup with his hands AND his mouth.  We eventually pried it away and hid it.  I can't blame him.  They have the best sweet tea!  Needless to say, the ride home was filled with many squeals and "mamas" from being so hopped up on sweet tea!

I am still working on posting the video of him and Nassau.  I suppose I bragged on myself too soon in the previous post because now I'm having a hard time getting it to load.

That's everything I have for now.  Please just continue to pray for us.  I'm very guilty of not praying enough when things are going smoothly.  The one thing I am praying for specifically is that we have heard all of the bad news.  I am praying that his scoliosis remains mild and corrects itself, sparing him from any lung issues.  I am also praying for Reece's doctors.  I pray that they stay knowledgeable and monitor Reece closely for any changes.  I pray for those who are affected by Escobar Syndrome more severely than Reece.  May they remain strong and continue to heal.

Thanks everyone for your love and prayers.

With love,

Beth