Wednesday, July 18, 2007

Diagnoses

We've had a very eventful couple of weeks.

Last week we went to the Henrico Doctors' Developmental Follow-Up Clinic for an evaluation. We normally only go every 6 months, but I had some concerns. Aerin isn't hitting some milestones on time or at all. Although she understands everything we say to her, she isn't talking. She also won't feed herself (though she's demonstrated that she can) or scribble with a crayon. She FREAKS OUT when you brush her teeth or wash her hair and she refuses to let you guide her hand. I thought that she might be a little slow or maybe not that bright. I still feel very guilty about that. It turns out that Aerin is perfectly bright - she has a condition called Sensory Processing Disorder. SPD is a spectrum disorder that affects the way the brain interprets the information that comes in; it also affects the response to that information. This is almost certainly the result of her extreme prematurity - her central nervous system had to function before it was fully mature. Dr. Brown told me that almost all of the micropreemies and a goodly number of regular preemies she sees have some degree of SPD. Aerin is fortunate not to have a lot of the more extreme symptoms and should do very well with therapy. She will be going to both Occupational Therapy and Speech Therapy and the doctors are very optimistic that she'll have a successful outcome.

Although SPD (sometimes called Sensory Integration Dysfunction) is often associated with Autism, Aerin does not have Autism.

We also went back to the plastic surgeon, Dr. Pozez. She was very happy to see how Aerin has grown and how clean the ulceration on her hemangioma is. She was able to tell us that she almost definitely can do a skin graft! That was a big relief. She also said that even if Aerin does need a VAC*, she'll train us to do it ourselves at home so that Aerin doesn't have to stay in the PICU an extra week.

Aerin's MRA has been scheduled for August 9th. Her surgery will likely be in the early fall.

Aerin has mastered all of the shapes in her shape-sorter, which Dr. Brown was very impressed with. For some reason, the triangle took her the longest. She got the star right away, which is much harder, but that's so Aerin. She is also a whiz with puzzles and regularly does ones in the 2-4 age range.


*VAC is short for Vacuum-Assisted Closure, also known as negative wound pressure therapy. It promotes the formation of granulation tissue in the wound bed. In this system, a special foam dressing with an attached evacuation tube is inserted into the wound and covered with an adhesive drape in order to create an airtight seal. Negative pressure is applied and the wound effluent is collected in a canister.

1 comment:

Anne/kq said...

SPD is not the end of the world; in some cases, it can even be helpful (I can season food without tasting it, just by smell I can tell if it needs extra salt!)

As always, I'm here if you ever need to talk, vent about having a kid with SPD (been there!) or ask about what she might be going through with a specific issue or for ideas on adaptations she might find helpful (been there, too!)

Good news about the skin graft! I bet you cannot wait for Aerin's arm to be better-- and in time for her to wear winter clothes with much less hassle! That's going to be a relief for you, I'm sure, and while it's scary her going into surgery, I know it will turn out fine, and she will come through with flying colors! As always, our love, thoughts and prayers will be with you and her as you prepare for and go through the surgery.