I just realized I have not been updating about the doc appointments we have had. So let me recap.
Darcy went back to the PID doc a few weeks ago. Her viral load is down to 212. If you remember it was about 1000 when she first came home. This is good for a multitude of reasons. Number one, it is just good that her viral load is responding to the meds and going down. But, it is also good that she is no longer even eligible for the study that her doc wanted her to do. I am glad to have that off the table.
They also tested her for drug resistance. She tested as partially resistant to one drug. Unfortunately, the doc said it was a great drug with few side effects. But, she has lots of other options since she did not show resistance to any other drugs. Very relieved about that.
She goes back in a month and if her viral load is undetectable, which they expect it to be, than she can switch to the same med combo her sister is on. That would be great.
Darcy also went and got her eyes checked and they are perfect. No issues there at all.
Eva went to her speech evaluation today. The speech therapist was blown away. She said when she looked at Eva's info she thought that they wouldn't even get through the first part of the first test. But, E was able to complete all 3 tests all the way through her age range.
She is testing on a 4 year old level in receptive and expressive language and articulation. Since she is almost 7 that sounds like a big delay, but considering she has only been in an English speaking country for 8 months, that is insanely amazing. Add in FAS and a chromosome deletion known for speech delay and it is mind blowing.
The speech therapist was totally shocked. She said she didn't know what we were doing, but to keep doing it because it was obviously the right things to be doing. I was so proud of Eva, and even better, she was so proud of herself.
Besides just doing well on the testing, SHE SAT THROUGH 3 TESTS. Between the second and third she almost shut down. BUT SHE DIDN'T. I talked to her about how it was ok if she didn't know the answer and that we were almost done and that she was doing great. and she came back to us. By the end of the 3rd test she was pulling her dress up over her face and her hands were in super jazz mode, BUT SHE FINISHED THE TEST. And finished it well!!!
YAY FOR PROGRESS!!! Huge Huge progress.
Unfortunately, the wait for actually starting to take the speech therapy is long. super long. I thought once we were in, we were in. But today was just an evaluation stating she qualifies for therapy. Now we get on the waiting list and...wait. I really hope it isn't too long since she is almost 7. But, we are clearly doing good things here at home, so I have faith that it will all be OK no matter what.
She is just breaking all the labels, barriers, and boundaries people keep trying to saddle her with doesn't she?? I wanna be like her when I grow up.
The speech therapist also said to go ahead and sign Darcy up for an evaluation because it takes so long to get in. Sigh. Just when I cross one thing off the list, I add another. But, that is ok. One thing at a time.
That is the latest. We have a house full of sickies this week, so it is a little chaotic. But, what would the Hogeland house be without chaos?
I don't know where you live but you might check the colleges and universities around you. Some have a speech pathology program and sometimes you can get a child to a therapist there since they want to have clinics where the students can learn...just a thought
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