March 13, 2010

So Many Changes!!!
Sorry that I have not posted in so long. We have been going through a lot of changes and some have been exciting and some not so good.
First exciting news is, we bought a newer more spacious van. We need the space, as we seem to be accruing more equipment. Plus our older van was beginning to need more work than we were willing to pay. So we traded it in and got a great deal on a 2005 Dodge Grand Caravan, with all the bells and whistles. It is so nice!
Second exciting news is, that after eight years of living in a two bedroom apartment, we are moving into a three bedroom, two bathroom house. We will finally be able to spread out and not be all over each other. Jessica will have her own room and the boy's will be sharing a room. The kid's will finally have a fenced in backyard to play in. Oh, the freedom!!! We will be moving in this Monday and we cannot wait.
Now for the not so good news. About a year ago, Jessica started going downhill neurologically. She started having trouble walking, started having trouble using her arms and hands, severe overall pain, stomach pain, constipation, fatigue, migraines, nausea, and mood change. We saw a specialist, at a not so local SF children's hospital, and he feels that it is all neurological. We have no answers right now. My son's Geneticist feels that she is also suffering from the same unknown genetic disorder and is going downhill because of it. I am praying that her Neuro figures out what is going on and can help her. He ran a buch of bloodwork and urinalysis and we are waiting on the results. Right now he is treating her pain with a neural pain blocker, which does help on most days. Though she has had some breakthrough pain and he will probably be titering it up to a higher dose.
We also pulled Jessica from school. She had missed so much school, even when she was there she could not keep up with her peers, and then add that she was way behind before hand. So her neuro suggested that we pull her out, do the Home Hospital Program for the next six months, and see how she does. So we are officially doing homeschooling. This was a hard choice and tough for everyone involved. It saddens me to the extent that she is behind. We discussed this with her teacher and she feels it is time the school district did something to help her. We couldn't agree more. So we are on to our next battle.
Thank you for sharing in both our joys and sorrows. Please keep the children in your prayer, as we will also be going though more changes and other stuff is going on, which I will post, when we get it all sorted out. It is all in God's hands. Praying that this post finds you and your families well.