MRI

31 months:

We had an MRI this week, again. Whitney's brain is mature now, so it is good timing. I hope to get results toon. We have an EEG next week to see if we can find out what is causing the absence seizures. I have a feeling we will see negative results again...as an hour procedure is not going to pick up something that is so intermittant.

We visited the neurologist last week. Whitney's hypotonia is not showing any changes. She is so flexible, it scares people. I hope we can turn that to a positive as her muscles get stronger. They certainly are stronger, she can walk holding hands pretty well, but we are now dealing with the "I can't" syndrome. She is quite used to not walking.

Cognitively, we are encoursaged. She talks up a storm, it's just in Klingon. We are starting to understand her, however (her therapists do too so we are not crazy), and she does speak in some very quick sentences (Already did that, I can't do it...). She is able to look at pictures of animals and say what sound they make (cat, cow, sheep, pig) althought the sheep speaks in japaneese (Meh instead of Baa). I'll take it.

She is certainly coming along, although her cognitive is far outstretching her physical which still rests at less than a year. I don't really care about the physical; I just want to find out how to help her learn without needing complete use of her hands and legs.

Today we went to a meeting to start staffing her for school in the fall. She would go to Creel Elementary for their special preschool program. They have a developmental delay pre-k class that is from age 3-kindergarden. The classrooms start at about a 3 student to 1 teacher ratio, and they build through the year to a higher ratio, adding aids about every 6 kids, to a max around 12 kids. They send a bus to our house to pick her up, and have an aid on the bus if we feel she needs someone to assist her. The program is 5 days a week 8(?)-2:30. I think www will love it, but we need to reduce naptime before then. She will conk out in the middle of the day! I do know they have naptime though. Good thing. We have a lot of assessments to go through before that time..IQ tests, physical tests, self-help tests...all to staff her properly with therapists and teachers.

I'm Back

It's been a while. I needed a break. When we went to the geneticist, her main point to us was to stop seeing doctors. We did and it felt great.

Whitney finally started feeding herself about a month ago. How that has changed our lives. A babysitter took her out to eat and Whitney ate everything she was given by herself. Ever since, we have not done it for her. We help her eat with a spoon, but she is getting very good at that too. It is such a blessing.

We just went to the Neurologist. We discussed an absence seizure we observed and some walking issues. Whitney is still not walking. When she practices (amid the screaming), she scissors her legs, which the doctor said is unusual for hypotonia. It is more assiociated with Hypertonia. Whit is definately not experiencing too much muscle tone, so something else is going on.

We are going to do another MRI now that her brain is fully developed and an EEG for the seizures. We are trying to get another urine sample for a mucopolysaccaride test, but whit is still not potty trained, so that complicates matters immensely. I think I'll be potty training this weekend. At least he didn't ask for a muscle biopsy at this point.

Whitney has tripled her vocabulary since her last appointment, and is speaking some sentences when stressed or when she REALLY wants something. She told us "I can't do it" the other day during physical therapy. I'm not dreaming...two other people heard her and understood her. She also tells us "I do", "I want ....", "I can", and other things. She signs and says "cookie," which is about the cutest thing I have ever seen. I think she has made progress because we got her ears cleared up finally.