Upcoming events

Random cute pictures!

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Laelia at Lauren’s

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Laelia at PT on the Gait Trainer

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Laelia at OT (Who says you need biceps to blow bubbles?!)

We have a some very exciting things coming soon. The first being the arthrogryposis clinic in Seattle!   Laelia and Mommy leave in five days! We’ll meet up with Kiersten and little Ryan and will be gone from March 30th to April 2nd. I’m excited to get to see Kiersten again. Besides one Disneyland vacation we’ve mostly just kept in contact via email. It keeps us sane since we experience very similar frustrations in this little world of arthrogryposis. Plus we’re both “lottery” winners, meaning we both won the 1 in 10,000 chance of having a kid with amyoplasia and the 1 in who-knows-how-rare chance of having that amyoplasia in all four limbs. Bleh.

I’m almost prepared for this trip. I made a book of Laelia’s pictures from birth to four months and labeled them. This will help Dr. Hall (and yes that’s a link to her own wikipedia page–she’s a celebrity in these circles) with her official diagnosis and prognosis for arthrogryposis. :) We’ve asked all our family about genetic history on both sides. I have a partial list of questions for the doctors and OT we’re seeing–including some questions on the next surgery Laelia has coming up and if there’s a way around it. Ah homework. It feels like being back in school. :)

I also got a copy of Laelia’s medical records (minus newborn records that I couldn’t get my hands on fast enough) for myself, and went through the mess of ‘em putting in notes and divisions. While reading through them I was absolutely amazed to see how far she’s come.   It brought back some painful memories truth be told.   I read again about all the tests that came back so negative: muscle wasting, weakness, lack of function, poor to no use of limbs, severe joint deformities etc.   Some of the doctor notes mentioned how hard it was for them to even do exams or tests because of Lali’s deformities.   So the fact that now people on the street give me dirty looks for using my handicapped parking placard because no one in the car looks obviously disabled is amazing!!!

Here’s two of the pictures in her folder.

Five hours old:

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Five months old:

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So I’ll be sure to update everyone on our trip when we get back.   If I learn even one new thing to help my daughter from these experts it will have been worth it.

The other exciting thing coming up is a meeting on April 5th to apply for school (Head Start) for Lali next year! We met with Early Head Start (where Lali is now) and Regional Center on Friday (the 19th).   We learned that the Regional Center will end service for her when she turns three because she has no mental disabilities. Yay! (They were the ones providing respite care for us before California budget cuts.)   And even though Lali was uncharacteristically bratty and threw a few minor fits, the meeting still went really well. We’re really excited about Head Start and are looking into going to a school in National City. They really want her to go to school where she can thrive! And Barbara from Head Start (the special ed coordinator) answered all our many questions.   Our next steps are to do the application (which is a long, involved process and requires traveling to the school), do an IEP in June or July and then we’ll see! I hope I hope I hope this works out! We were a bit emotional after this meeting. We’re SO SO SO thankful that Laelia’s charms get her places, and that her teachers love her.

Then there’s my birthday coming up. Laelia is probably taking me to the zoo for that one.   :) Then there’s jury duty… yeah I’m out of exciting things. :-D

One Response to “Upcoming events”

  1. Kiersten says:

    Sooo excited for next week! I keep asking Ryan if he wants to go on an airplane to see Laelia…he answers “yesh, Mommy”….too cute.
    Love Laelia in the gate trainer – how does she like it?
    I need to get Ryan’s birth pics together – thanks for reminding me. They sure have come a long way, haven’t they?

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