Friday, February 10, 2012

Here's What You've Missed...

I know it's hard to believe this, but a lot has happened this week that was not centered around me. Take a moment to take that all in. I's a lot.

I do have two children and they have busy lives. And this week was no different. As a matter of fact, this past week was jam packed with activity and excitement and even a surprise diagnosis.

I'll start with Brian. He's back in school and so happy. He is doing a great job listening to his teachers, sharing with his friends, cooperating and paying attention. He's also getting great praise from Miss Maggie, his speech therapist! She is so impressed with his progress and each week sends home exercises for me to practice with him. He's been sailing through each worksheet and I'm so proud.

After yesterday's hive incident I made another appointment with the allergist - unfortunately for the second week of March. I'm hoping he doesn't have a severe peanut allergy - it's the one thing that just scares me so much. He's feeling much better today. Actually, he's feeling much better all around after a long illness. He has his appetite back (times ten!!) and his sleep patterns normalized...thank God.

Gavin was back to therapy this week, too. This week was the exact reason why I'm so over the top about keeping my kids healthy. Not only did Gavin miss a week of therapy due to the sickness in our house...but this week suffered as well. It takes him a while to get back in the swing of things when there's a break - regardless of how much we work with him. So therapy this week was... "eh".

But there were some exciting and interesting events! Walking at the YMCA in their Gym on Tuesday was a big highlight of the week...coincidentally falling on the worst day of the week for me. And just yesterday, Miss Sara and I visited a neighboring YMCA that has a widely acclaimed "special needs room." We asked for a tour and ended up signing Gavin into a class called "Super Stars" every friday morning. They have a beautiful, clean, padded set up with lots of great equipment that we can try with Gavin. I'm very excited! And we're looking into signing Brian up for a fun class, too! We may even sign BOTH boys up for gymnastics on the weekends.

This week I also got a tip about a groundbreaking genetic test that sounds very interesting. It's called Exome Sequencing. I contacted Gavin's geneticist, Dr. Gripp, and asked her if this is something we should consider for him. We're going to start with a variation of the test while we wait on insurance verification. She wrote to me:

The most appropriate way to use it for Gavin right now would be to focus on the X-chromosome, and on those genes known to cause problems. I'd suggest to start with the resequencing of the X-chromosome, an X-linked panel. If that still doesn't give us a diagnosis, we will consider using the similar approach for all the chromosomes (this is what you refer to as exome).

I love being on the cutting edge of genetics and I'm so grateful that Dr. Gripp (who is the Chief of Genetics at DuPont) is so supportive. She truly believes that there is a diagnosis out there for Gavin - that something went wrong genetically - and someday we will find it.

I brought Gavin to see my Acupuncturist today. Dr. Kang spent a lot of time teaching me different massage, percussion and trigger points to use on Gavin. She thinks we can help him with his nervous system, digestive system and his muscle strength by increasing the blood flow up and down his spine. I learned a lot from her today. There were no needles...but she did do muscle testing on Gavin through me! And the results were quite surprising.

First, she tested me. I was tested for milk, egg, gluten and wheat - holding vials of liquid that represented each in my left hand. Turns out I'm not sensitive to any of them (thank God as I went gluten free about a month ago and lasted for all about ten seconds!). Then I was retested...but this time I held Gavin's hand and she put the same vials in his sock so it was against his skin. Milk - negative. Thank God - he LOVES milk. Egg - positive. But we knew that he was allergic to eggs so that wasn't a surprise. What was a surprise? Wheat and Gluten! He tested positive for both. I panicked for about five seconds until I realized - Gavin's diet has been gluten free from the start. When I got home I just double checked his yogurt - but turns out we're all clear! I set up an appointment for Brian this Monday. I am hoping and praying that HE isn't sensitive to gluten and wheat - that will be a whole lot harder.

This afternoon was Gavin's physical therapy with Miss Wendy. Of all the therapies he had this week, he worked the hardest for her today. She had him walking (not crawling) up the stairs while holding onto the spokes of the railing...and then crawling back down. I suspect he'll being doing this alone in no time.

It's never a dull moment around here!!

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