6.3.10

Yesterday, Aimee had her weekly occupational therapy appointment, as well as, a check in with the Neurodevelopmental department at Children's.

What a discouraging day. Aimee was fairly uncooperative with the therapist in the morning. Then, at the clinic appointment, nothing happened. Or so it seemed. Basically, we rediscussed all the aspects of the situation and ended up with the doctor saying "as to the 'why' question, I really have no idea". It appears like we are about to give up on figuring it all out. We are waiting to do a few more chromosomal tests with genetics and will most likely meet with Pediatric Neurology after that (the last department that could have any light to shed). Overall though....we have come to the end of the rope. Sure we'll keep meeting with all of these different departments every couple of months so that they can track her development. There are also a few practical questions to deal with, but...essentially...that's it.

As far as the practical side, Neurodevelopmental is going to talk with Audiology to decide on hearing implements. We are meeting with Sensory Disability Services on Monday to have an assesment done with functional recommendations. Wednesday morning we will be back in Seattle to see Endocrinology regarding the reproductive questions. Friday morning we will be down at radiology to have a swallow study done.

The one piece of quasi good news is that Aimee will not have to wear a helmet. The craniofacial nurse assessed her head shape and detirmined that it would be pointless to try any implementation. She was not overly concerned about the change in shape and also the helmet works to reshape the skull as it grows. Since her skull is growing extremely slowly, this would be fairly pointless.

We will continue to update with Aimee's progress and appointments. Maybe one of these days I can actually get her laugh on video for you. It will make your heart so glad to hear it.

Ps. Please pray for favor as we are reapplying for financial aid and for SSI. We are starting to need special equipment to accommodate Aimee's size and abilities, which we will not be able to afford on our own.