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Saturday, July 9, 2011

We got back from the Mayo clinic this week. We did get some answers, but one week just isn't enough to figure out everything!

We met with Dr. Renaud
She said that she had the week already full of all the tests we were going to do. She asked a lot of questions, but had all the papers we sent prior to coming.
After meeting with her, we went to get urine and blood tests. She wanted to test for over 200 metabolic disorders.

We also met with Becky, a speech pathologist that works with Dr. Strand. Becky was great- When we went in there, Becky knew right away that Stryder had severe Apraxia, when no one has been able to tell for sure. She showed us the graph where his speech falls and the "dot" wouldn't even be on the graph so >1. His expressive speech is showing slowing too, because of this. She told us that she would try to get us to see Dr. Strand this week, but her schedule was very full and we probably would not.
Stryder was so tired!

I can't really remember what tests were done this day LOL, but it was full of wandering the Mayo Clinic

Consultation for sleep- Stryder doesn't sleep very much at all. Most nights he gets about 5-6 hours at the most and doesn't take naps too often during the day. He also wakes up at night a lot.

We met with Dr. Strand and I was so impressed with her. She immediately said that she didn't have a lot of time, but squeezed us in. Her ten minutes turned into over an hour! Dr. Strand is the BEST known speech disorder Dr. in the world! and to get a chance to meet with her was an honor. We were told that it wouldn't happen, she doesn't see new patients and rarely works with children anymore.

Dr. Strand reaffirmed the Apraxia diagnosis and got so happy when she was talking with Stryder. It was such a wonderful feeling knowing that someone had such compassion for someone they didn't know. She talked and talked with Stryder and even brought in another DR. just to show that Stryder had EVERY single sign of Apraxia. Unfortunately, Apraxia is over diagnosed so when therapists see it, they don't know what the real thing looks like.

Dr. Strand said that with extensive speech therepy five times a week Stryder may talk by second grade, without that-eighth grade. She wants Stryder to come back for 6 weeks for an extensive therepy session with her and Becky, twice a day with follow ups after. She was so excited to meet a child like Stryder, so willing to learn and so happy. I can't tell you how this made me feel as a mother to have someone so interested in his future. She also wants to include him in a Study .... We are waiting to get the documents from the Mayo for more Info.
Dr. Strand said that she would like to see Stryder September 10 until October 21, we just have to find more $ to get there.....

Results for the Sleep study were a shock! Stryder is having seizures at night-that's why he wakes up so much and doesn't sleep. He also has sleep apnea and kicking legs. We are treating the seizures with Keppra. It can change moods so I am on watch and very nervous that he has to be on medication now. They want to do more studies if we come back.

More results on the tests. Most things came back negative, but they want more tests. One of the Dr.s feels he has a disorder that is not a positive one at all, but until we know for sure I won't even talk about it or what it is. I don't want to worry about things that may not be there. He may also have Celiac disease. They did a test, but his levels were a little off and a different test is needed to determine if he has it. They also want to do more stool tests when we go back for the six weeks in September.
I took this picture from my phone in a dome that was underground.

The Mayo clinic is amazing. Every DR. we met with had the previous Dr.s notes and if we had to do more tests that were not scheduled, we just went. All the buildings are connected by sky walks or pedestrian subways-you never have to go outside. We knew the paths pretty well but when we decided to venture outside we had no idea where we were.--
So now we have to raise more funds to get back for more testing and more therapy. Still to come are some genetic tests, Celiac disease and some stool tests--


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Angela Rozewski
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