Friday, April 24, 2009

Been Crazy!

We had the private inspection today. There are a lot of little things that need to be done over time but luckily, no big issues with the home. Soooooo...we are moving forward! The VA Inspection has been ordered and if all goes as planned, we will be moved in to our new home within about 45 days. There are definitely lots of little projects that will keep me busy for a few years but I am excited about being a home owner again.

In other news, Jovanna has had a rough few days. She had a dystonic reaction to one of her medications and she had to go into the hospital on Monday. She was transferred to Doernbeckers Childrens Hospital later that evening. She is having odd eye movement and the muscles in different areas of her body are contracting and tensing up. I guess it is pretty serious because the concern is that it can go to the larynx and that can cause problems with breathing. This is such a scary thing to me. I have all kinds of guilt that I feel because of the medications she is on and feeling responsible. Over the last few months, Jovanna has been more challenging and I believe it is related to puberty. Last week, we decided to increase two of her medications slightly and that is what did it. Now, I'm feeling really awful.

Because of what we know about Jovanna and her history of being aggressive and violent, her care team decided that it would be best if we transferred her to a sub-acute unit at Albertina Kerr. This was so we could safely tritrate her down off the medications that are linked to the dystonic reaction and there was concern that she would fall apart and we wouldn't be able to manage that at home. This was a tough decision because she hadn't done anything wrong to that point and I was concerned that she wouldn't understand why it was happening.

She was transferred to the sub-acute unit on Wednesday and other than some challenging behavior during the transition, which is understandable because she doesn't transition well, she has been doing great! No problems! And the greatest thing about this is the prescribing psychiatrist who is working on her medications decided to immediately remove her from two of the three medications in question and she is doing great. She hasn't fallen apart, she is dealing with the inherent challenges of the situation, managing expectations... I am finding myself just in shock! I expected her to fall apart and so did everyone else.

This got me thinking. When we landed on her current medication regimen, she was amidst the most difficult years for children on the Autism Spectrum. Many parents with children like Jovanna will tell you that they never, ever, ever would want to go back to the 7, 8, 9, 10 year old years with the Aspergers/Autism Spectrum child. They are hell on earth. But Jovanna is 11 now and that is typically when these kids start to function better in this world. Could it be that this is what is happening for Jovanna? I hate to get my hopes up because this could be the infamous "honeymoon" period that many children like Jovanna have when they transition to a new environment. But...just maybe...she might not need all those medications we had her on now. And maybe the problems we did have over the last several months were because with puberty changes, she was actually being over-medicated.

Well, I am trying to not get too hopeful because I have done this before and then was let down. First things first, we have to get the dystonic reaction to go away. But I am excited to see what Jovanna looks like off all those medications and if she is able to continue to be o.k. like that. Just maybe...we are entering into a new and exciting phase in her development.

1 comment:

Keely Yowler said...

My thoughts and good wishes are with you and Jovanna. Hope this is the beginning of wonderful new days ahead.