I'm a little late, but two weeks ago marked the one year anniversary for GAMT treatment for Sam. Her geneticist said that after a year of treatment we should feel like Sam is a totally different child. And, he was completely right! Reading over my last post I can't believe "boo-K" was such a short time ago. Here are some random updates of happiness:
Last week, while waiting in a very long drive-thru line at McDonald's for apples, Sam must have heard me mumble under my breath, because she began saying, with much spunk and attitude, "Come On!" Even more attitude comes out when I ask her to do something and she says "okay, gee!" as if totally put out by the request.
Today Sam made pretty much her best sentence so far, "Mom, I'm hungry" while looking in the fridge. My mouth gaped a little at the expression of what she was feeling inside her little self (not to mention the wonderful word that is now used about 600 times per day to get my attention "mom!"). It isn't the most words in a sentence ever, but the most expressive. So cool. :)
Sam is bonding with a baby doll. She carries it around, even talks to it a bit and cried when she had to leave it at home to go to school Monday. Her doll's name is "Jessica" and Sam can actually say it pretty clearly.
Sam can read many site words (25?). Her teacher tested her on her alphabet this week and Sam passed upper and lower case with flying colors. Her teacher was so excited she sent me, all the aides, the speech and resource teachers and the principal an email with the subject line "Hooray for Sam!" We've begun discussing a plan for Sam for first grade, so it looks like we will be able to continue "main-streaming"!
Sam started another course of "The Listening Program" in December and a week or so later her teacher said "The music you are having her listen to is really helping. I'm seeing a difference". Then in January she said "it's weird, but I look up in circle time now and Sam is staring right at me, listening. I used to look up and find her totally distracted with something else. She is actually listening now." Reading books at home is the same story. Sam is actually interested in books outside of her five favorites that we've read a million times.
Sam's class has a new song/poem every week. Sam's favorite is "are you sleeping brother john" which she can sing well enough that others recognize it.
Since January I have been volunteering in Sam's class two days a week while they work on centers (specific topics like math, reading, art- broken into groups of six kids). This is where she has struggled to stay on task as the subject matter gets deeper than listening to stories and singing songs. It has been a great opportunity to prod Sam towards living up to her potential in the classroom. Her teacher has seemed very surprised when Sam has read words from easy books with me. A great moment was when Sam mumbled to me something about "potty" and I told her she needed to ask her teacher. She turned and said "Mrs. Brown, need to potty". Her teacher seemed stunned. I was able to stay late one day and go to recess with the class. Sam was right in the thick of the play- climbing with the boys, running with the girls and when it was time to line up, several kids were arguing over who could be by Sam in line.
Also since January we have begun weekly speech therapy and bi-weekly occupational therapy (OT). The results with both have been great. Every week her speech therapist is surprised that she has mastered (or at least made huge progress) with her new materials from the week before. The therapist has been such a positive person to work with and is very optimistic about Sam's future progress. She said that Sam has "apraxia" which is basically a difficulty motor planning the mouth and tongue for making the many unique sounds in speech flow together. So, we have to work on each sound, then combining that sound with another (like S, then See, Saw, Say, Sew, Sigh). And after lots of practice she should start building up the skills to speak more clearly. Evidently many parents of kids with apraxia work for months on things that Sam is accomplishing in a week or two, so we are all very excited. OT has been great too. Sam's pencil grip has improved and she is starting to make some effort to color in certain areas of pictures, etc. Not writing yet, but we'll get there. She can now button large and medium buttons fairly well and can use scissors to cut (mostly a jagged line, but big progress over nothing!).
Developmentally the progress is amazing, especially for me when I try to recall the details of three months since my last post.
On the biological/medical end of things, Sam's blood tests have shown that she is getting good nutrition and things are pretty balanced for the most part. However, her seizures have continued. I started wondering if, when a year ago we started the creatine and had such an immediate end to her seizures, if that wasn't solely due to creatine, but that the magic combination of meds and creatine is what worked so well. We slowly took Sam off meds last June (sure that the meds were useless because they had done nothing for her before the creatine began) and she began having seizures again about four weeks later. So... Sam went back to her neurologist this week and we started lamotrigene again last night. Today was her great "Mom, I'm hungry" day, so she is seeming normal or even better-than-normal. If the seizures go away on the tiny dose we are starting her at, we will just keep the dose super low. The doc we talked to explained that these seizures have been doing no damage to her brain (only seizures that cause a loss of oxygen to the brain are actually damaging) but that the one thing they could effect is her ability to recall, which is crucial in the billion things we are trying to get her to learn right now. So, we are really hoping this is the magic cocktail that calms those little electrical storms in her brain.
Thanks to everyone for their love and support, especially my friends that have been babysitting Ellie & Bubba so much to allow me to help Sam in the classroom and in therapy.
Keep praying for Sam, it seems to be working. :)
