Well, that was interesting.

Our appointment time changed from 10am to 7:45am. We were there for five hours. During our stay a fire broke out on the third floor of the next building. Then a news crew showed up. So, you know, cool.

The neurologist who saw Laelie wasn’t encouraging about our eligibility for the clinic. We are starting some tests to *try* and find out what caused Laelia’s condition. If we do find out, and it matches something on their list, then we can stay. Just having the diagnosis of amyoplasia isn’t enough. They need to know what caused it. I told her (the neurologist) that back when we were diagnosed we were told a “vascular accident” caused it. The neurologist wasn’t sure about that. “How would a vascular accident effect her whole body like this? It would have to be a vascular accident to the spinal cord, which I don’t see evidence for.”

So what? She was just born that way!? We’ve been telling people for eight months that Laelie had an accident when she was still inside my tummy, just like people have car accidents and need to go to the doctor. Now she was just born this way?

It’s scary that this “just happened” to my daughter, but in some ways I think that makes me feel better. Like maybe something inside me didn’t break her. Once after being asked by my doctor if I would have more children, I told him that I couldn’t because, “my womb eats children.” I said that! Now I find out that it may just be a random mutation that caused this. And, yes, that may screw her chances for programs, clinics and funding for studies, because they don’t know what caused this, but it would also mean there was nothing I could have done. I can’t tell you how many times I have beat myself up thinking about if only I had conceived later or been more responsible about when to start a family, then she wouldn’t have been born this way. Now I might be able to say there was no accident. This is how she was born. This is normal for her.

I met a little girl around seven years old at this clinic who didn’t even have a diagnosis. How terrible! Imagine how hard it is for that baby girl to get through the system. At least we have a diagnosis!

We’ll go back to the clinic in August. But in July I have to gather information about my family to see if there is any way this could be genetic. So ATTENTION FAMILY!!! Please let us know the health background of everyone related to Laelia, if you know! Even minor things related to their health or body that were unusual. Please email me what you find! Thanks so much!

Baby didn’t handle the day of Children’s Hospital very well. She missed her nap and didn’t eat very well. Then she cried a lot at night, and now she has a slight fever. Actually so do I. I went to the doctor on Friday the 13th and got some blood work too. Of course it didn’t take five hours so baby and I aren’t even yet.

Speaking of blood work, that was a HORRIBLE experience. It was the last thing Laelie had to do that day. We get her in there and the lady taking her blood just says, “This won’t work,” so many times! She looks at me accusingly and says, “I can’t turn her arms around! She doesn’t have an inner elbow! This won’t work.” Excuse me! Then she ties up baby’s arm and flicks several places, unties it, ties up the other one, says like clockwork, “This won’t work,” and gets out a hot pad. At this point Little Laelie Love is crying. Then I go on the offensive. “Excuse me, (drawing myself up tall) but how long have you worked with children? Do you have any experience? Have you ever drawn blood from a disabled child?” Six years. Red Cross. ”Cerebral palsy and others.” Then her, “This won’t work,” became, “This won’t be easy,” with only a modicum of difference in tone. We finally did find a vein in her hand below the second knuckle. That hurt! It’s at this point, while I’m holding her arm still, that I remember that one time I took a friend to Urgent Care and they took her blood.. and I passed out just from watching! So I almost lost it and I wasn’t even looking! Then I take a long time to get her back to the car. I bought some bottled water and put my head between my knees. Ugh. Charley had to rescue me during his lunch break. He went back to work when my nausea passed. Such a good daddy.

One thing the doctors did tell me was that there were no cures and no new studies or treatments for what my daughter has. This condition is very rare, and throwing a lot of time into studies for it wouldn’t help that many other kids. There’s no way to grow muscles. There are no transplant surgeries I can put her on a list for. It’s not like when your kidney fails and you get a new one. I started to cry when they told me all this which immediately got a social worker tossed my way. It just felt like another denial. Not as bad as getting denied for daycare, but we still kindof are getting denied for this clinic unless something changes.

Another thing I learned from this clinic is that we have the best OT! We were given a free therapist session (second opinion) and we were told the name of the best hand specialist who could help us, and it happened to be the one we have!

Another other thing I learned from this clinic, is that out of all the staff of Children’s Hospital–a ton of college-educated, medical professionals who have “arthrogryposis amyoplasia” rolling off their tongues–not one single one could pronounce my daughter’s name. I’m starting to feel like I named her Xypoljamida. (It’s pronounced “Bob.”)

This entry was posted on Wednesday, June 11th, 2008 at 4:33 pm and is filed under baby, coping, medical science. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.