4.29.11

Hard to even know where to begin filling you in on this past 2 weeks.

Hormone Test:
A few weeks ago we had met with Endrocrinology and had a hormone test done to determine if the signal telling Aimee's body to begin puberty was coming from her brain. That test came back normal, which means that the signal is coming from the cysts in her ovaries. We will be monitoring these and deciding the appropriate course of action. If they continue at the same rate, we may consider having the cysts surgically removed.

EEG:
Yesterday, Aimee and I met with the Neurology department to review the EEG she had done two weeks ago. Very sadly the test showed that Aimee is having multiple types of seizures. She is having general tonic seizures, which involve the whole brain at once and thus her whole body. These are what we originally took her in for and what we had always considered to be panic attacks/startle reflexes. She is also having localized seizures, which just involve one part of her brain at a time. These ones we did not know about at all.
After discussing the options and risks with the doctor, we decided to start her on a couple of seizure medications. I am VERY disappointed and terrified to do this. We have done so well at avoiding medications up until now, but it seems we need to go this route for now. We will be building up the doses on these over the next few months and watching her reactions and changes. Praying for wisdom to be able to tell what changes are due to the medication. There are things that she does, which could be seizure related, that we are not even aware of at this point.
We will also be taking her in for another sedated brain MRI in 2 months since she has not had one since she was 10 months old. This will give us a look into how her brain has developed since that time.

Otolaryngology:
We met with the Hearing Loss Clinic for several hours last week, which turned out to be appointments with an Aural Habilitation Specialist, Psychiatrist, Audiology and Otolaryngology. The only item of note out of this is that we will be having a CT scan done of her ears. They believe it is most likely that her hearing loss is related to her delayed brain development, but, just in case, they would like to rule out any other major potential causes.

Naturopath:
Her ear infection cleared up and her ear drum healed nicely. Just hoping that we can recognize the signs of an infection next time before it gets that bad.

TVI:
We met with the Teacher of the Visually Impaired (TVI) last week and discussed the characteristics and new research regarding CVI (Cortical Vision Impairment). This was really helpful and fascinating. The TVI wrote up a report based on Aimee's current abilities and gave her a score in each area that is typical of CVI kids. For the most part she is starting at square one with very few resolved issues, but it is really, really helpful to have an understanding of what she can do. This report also gave us specific activities and goals that will help improve these areas of challenge.

School District:
This week Aimee and I met with the school district to discuss starting Aimee in a two year old classroom this September. While I never pictured myself sending my kids to school, especially so early, I am beginning to see how this could be a real benefit for Aimee. She would be in a fairly small class (around 10 kids) and would have the opportunity to learn how to create relationships with peers. It would be a very part time program that I would be able to be as involved in as I want. Before I decide I am going to go visit one of the current classrooms, but I am leaning towards participating.

Wheelchair:
We got the word that Aimee's chair shipped earlier this week to the medical supply company in Seattle. We tentatively have an appointment scheduled for the end of next week to have Aimee fitted for the chair and to take it home! Even if we can't get it by then, we will definitely have it very soon!

Ed's Tonsillectomy:
Ed had his tonsils removed a week ago Monday. He is starting to get back to his normal self, but still feels like he has a bad sore throat. He did end up having to take a week off of work and endure a lot more pain and a lot longer recovery than we had originally anticipated. I am pretty confident that it is going to be totally worth it and that he will have much more energy once he is fully himself again.

Easter:
We had a wonderful Easter weekend and got to meet our sweet nephew Valor. We also got to do a little easter egg hunt for his older brother and sisters. What a fun time!
We are so blessed with wonderful family!