Monday, February 23, 2009

Trip to Texas Children's Hospital

We are back home and racing through another week. Our trip to Houston was a good one and we got lots of good information from the Rett Clinic. Dr. Neul, Andrew's neurologist, says that he is one of 6 or 7 boys in the world with true Rett Syndrome. Can you believe that? He is such a special angel! He gave us some good information regarding therapies and prognosis for Andrew and wanted to include him in a research study. Andrew's GI doctor wants him to gain half a pound each month. He is too thin, but we feed him all day. Go figure! One big word we learned was retropulsion. What a cool word. This is the swinging back and forth motion Andrew does with his upper body. Andrew was such a trooper and even got over the fact that the dentist was an absolute jerk to him. He didn't even aknowledge Andrew and referred us to other dentists here in town. I will be writing a letter on this one. What a wierdo!

I am officially Vital Stim certified and true believer in it. I am planning on purchasing my own unit for Andrew as I believe it can and will help him again with swallowing. My first patient using it will be today.

We are still fighting the everyday battles with having a child with a disability. I have been on and off the phone with the insurance company and with medicaid this morning. We have insurance as a primary and medicaid for Andrew as secondary only based on his disability. Even though we have this I can not get him speech or physical therapy. I am frustrated. No one takes our insurance for home health therapy and none of the clinics listed as providers work with pediatrics. What a mess! It's almost as if we should have never gotten insurance for him, but then he wouldn't get ABA. AARG! The fight is on for this one! I have cried and now I need to press ahead.

Some tough moments for me as mom this week were reading a past favorite book to Andrew before bed. The book is called Hug and this was Andrew's favorite book from 12 to 18 months. It's about a monkey that goes around the jungle watching all the other mamma's with their babies hugging, and the monkey comments 'hug' on each page. Andrew's favorite parts were when the monkey cried and when he saw his mom. "Mama, Bo-Bo.....hug." Andrew sat with me but didn't look at the pages and was more interested in wringing his hands than anything. That was a hard moment for me. I cried for a good while and realize that although I wouldn't trade this Andrew for anything, I miss the little boy that we once had. Looking back at photos of him as a baby- it's just not the same child and I really miss all the things that he could do- even the smallest things like hold the remote in his hand, and turn the pages of a book.

One other thing that is bothering me this week- Dr. Neul says that 1/3 of children or girls with Rett Syndrome, now including Andrew, die from an unkown cause. That means that it wasn't complications with scoliosis, pneumonia, or a heart condition. Unknown! I put this out of my mind until Felt brought it up this week. It terrifies me and I am praying for peace and to let that thought go.


Caitlyn said...

I am glad you had a good visit. I hope the insurance thing is worked out for you guys soon. It is difficult, I know...

I have to tell you, I have never heard any doctor say that 1/3 of children with Rett Syndrome die from unknown causes...That seems a bit high...And I thought those Rett doctors were supposed to give us hope, not shut it out...grr...not good bedside manners..

Karlie Grace said...

I'm glad you all had a good trip! I can't imagine not having to explain everything about Rett to a doctor, how nice the clinic must be. I didn't know how many little guys had been noted but was told a few months ago from genetics that the number was growing. Some presenting a little differently but with hand wringing. Your little guy sure is special and i'm so glad i found your link.

Sooo proud of you for being VitalStim certified! That is awesome!!! I'm a huge believer of it's benefits as i seen Karlie go from pudding, to nectar, to thin. We still squeeze her straw with thin liquids but we're more than happy with the results. Took us five months of 3x a week but it sure worked!

Sending hugs for having such a tough week. Insurance battles suck but i don't understand why he doesn't qualify some where for speech and PT through Medicaid?

Do your best to forget the last part. Just try to live each day with your sweet little guy being happy. All of our futures are unpredictable, no need to sweat what we can't change! I miss Karlie's old abilities too but she amazes me everyday in other ways. They're truly the most amazing little people i've ever encountered. Meeting older girls is crazy inspirational! Sending much love from Indiana.