Tuesday, November 20, 2007

Thoughtful House Visit

We had our first visit to the Thoughtful House last Friday. It was really a good visit and we are definitely impressed. Dr. Jepson was able to talk extensivly about the biological aspects of children with Autism. Based on the results of stool and urine samples from Andrew, he has low Zinc and B12 levels. He does not have a high yeast or bacteria count but these kiddos bodies are unable to get rid of yeast and bacteria the way our bodies do so that could be problematic for him. They also have problems with their enzymes. A lot of the stuff that was said is way over my heads and I am thankful that Felt was able to understand some of it. The result is that we have increased his supplements, and he now gets a calcium supplement. We will be looking for a protein powder to supplement since he is having difficulty eating meats except bacon. He will be on a antibiotic followed by a round of antifungals (diflucan) to kill of yeast. Oh- and he will have a one day chelation trial (very scary) followed by a 6 hour urine sample (what fun!) to be shipped to a lab in France for testing. Can you believe that? That's the craziest part of it. I am just pleased that we have finally found someone who knows more than us on Autism. That afternoon Andrew received his Autism diagnosis from the CARD (center for Autism and Related Disorders) program. Not sure if this was worth all the money but they did spend aproximately an hour and a half with us.

Now we have to think about where we go with all of this. Andrew needs more therapy and they recommended 20 hours a week. It's very costly and Felt has talked about pushing our ECI for more free hours which will mean confrontations and arguments......something I don't look forward to. Pray for us that somehow we will be able to get him what he needs. I know God will provide and things will work out. I am confident of this. Look how great day care turned out for us and I was really doubtful.

Yesterday I took Andrew to the ENT (ear nose and throat) doctor and they want to do a tonsillectomy and removal of his adenoids. Hopefully this will help him sleep better, stop the snorning and even help his ears and development. It does require a hospital stay so I will have to schedule that today.

Results of his MRI last week look good but with Dr. Jepson's encouragement we are thinking of having the 24 hour EEG just to make sure that there is no seizure activity. That ought to be loads of fun considering the first two were so difficult and they were only a hour and a half long.

In all of this we are trying to keep things normal and look forward to the Thanksgiving break where we plan to go to Carlsbad, NM to visit grandparents. This will only happen if Felt can fix my car- it is really messed up.

Tuesday, November 13, 2007

One more thing!

Just wanted to share that Andrew was on the 10 O'Clock news Sat. night on CBS- Austin. My parents and I took him to the Autism Walk at the Dell Diamond that morning and pulled him around in his red wagon. How could someone not put him on the news? He was too cute and enjoyed the country band that played there. It was really good to see other families, and get resources. Oh- and he got an autographed picture of a guy named Jessie that is on the show Friday Night Lights. Kinda cool!
Andrew at the birthday party enjoying all of the attention!


Just had to include a picture of the awesome cake! Didn't I do a good job?

Wednesday, November 7, 2007

Andrew Turns 2

Andrew turned 2 Nov. the 2nd.. It was a special day for all of us but also hard as well. For so long I held on to the fact that he wasn't 2 yet, and that he would hopefully start to talk before he turned 2. When I sang happy birthday to him that morning he smiled and looked around very excited to see the house full of streamers and birthday banners. We had a small birthday party for him on Saturday with family and he seemed to enjoy the day especially the cake. I made him a chocolate gluten and cassen free cake with the encouragement of my mother-in-law and it actually turned out ok. After eating a whole piece Andrew could not go to sleep that night and woke up the next morning at five acting like he was on speed. It was really wild and definitely shows us that so much of what goes on with these kids depends on diet and nutrition. It was really nice to have family around to celebrate the day.

Andrew has been doing better with all of the therapy. He is starting to enjoy the brushing protocol that the occupational therapist recommended and is learning to request music by signing for Itunes. He now stands at the computer and trys to move the mouse to get music to play. Right now he is really into Jazz and loves the Sleepless in Seattle CD. I continue to enjoy meeting with other parents and talking to them at therapy. It is really comforting to hear their stories and gives me assurance that we are making the right choices.

We have lots of upcoming apptmts. Tommorrow he has an MRI early in the morning and on Friday we go to the Thoughtful House to meet with Dr. Jepson and Scott Allen (flying in from
California) who will also complete a diagnostic battery. It was hard to fill out 20 pages on behavior and developmental questions because so many of my answers were 'no he doesn't do that yet, but he did at one time.' Hard stuff to think about! We keep calling this our $1,000 dollar day because it will cost close to that. Please pray for us and pray that God will continue to provide financially for us. No, I am not asking anyone for money and we are not in need of any. We think that things will work out for us, but we can't imagine how parents with more than one child afford all of this. Please pray for Andrew that he will cooperate and that we will get our money's worth. We are excited and a little nervous and know that God continues to bless us in this situation. Sometimes I hear myself singing Kanye West's song "that-that don't kill me can only make me stronger." Crazy I know because I can not stand Kanye after his whole George Bush hates black people statement. What a loser!
On another note Andrew is now having difficulty with sleeping. At daycare he doesn't nap anymore and laughs while running around the other children. At night he is waking up at 9:00 and laughing, flapping his arms and legs until after midnight to wake up at 5:30 the next morning doing the same thing. It frustrates me because nothing seems to calm his brain back down. I really wonder what is going on in there because he has been the best sleeper since he was 6 weeks old. I have never had problems with this before. It scares me in the sense that I'm afraid he will wake up fall off the bed and hurt himself while we are asleep. Better get those baby monitors back out! The other day while trying to nap he stood up leaned over the rail and fell head first into his trash can. He was actually stuck crying when I ran in. It was the craziest scene. I have ordered him a weighted blanket so hopefully that will help but who knows how long this could last. I am thinking about supplementing with Melatonin but I'm afraid that he will become attached to it and always require this. ???? Any suggestions?
Well, I have finally posted and even learned how to get the pictures put in. YEA for me! The first was his lion costume on Halloween. He was soo cute and actually had fun being pulled around and made to trick-or-treat. We had him sign please and at this age no one expects the kids to say 'trick-or-treat' so it worked out ok. He wasn't able to eat the candy but one of the daycare teachers bought him gluten free candy so he had some of that when he got home. The other pictures- him at the pumpkin patch and then the birthday cake ofcourse. He was scared we would take it away. Enjoy!