Friday, October 20, 2006

Miss Jess Update:

Today was a pretty good day... Jess actually went to school!!!!!! School started mid-August and this is only the 3rd time she has felt up to going (or that we didn't have a doctor's appointment). Jess had a good time and even asked her teacher for homework. The teacher gave her a packet of cursive writting practice pages for her to do at her own pace. Several times today Jessica has taken it out and worked on it. I'm very proud of her wanting to learn.

Unfortunately Jessica has been having more and more dizzy spells, headaches and tummy aches. Well.... the tummy aches haven't gotten worse but they aren't much better. We are more concerned about the headaches and dizzy spells. During these episodes sometimes she has periods of seeing black and white. Monday she had what I feel was a true migraine. She was feeling nauseated and was sensitive to light. She felt much better after having a nap but the headache didn't completely go away. We can't get in to see the neurologist until Nov 29. I spoke to Jessica's primary care doctor and she doesn't want to start Jessica on any migraine drugs because they tend to make the arteries constrict and we sure don't want to do that to Jess with her complex medical history. The doctor gave me a prescription for nausea and said that sometimes that can help a migraine if it is accompanied with nausea. We'll see... Tonight Jess was feeling very tired and dizzy. She complained of tummy aches and headaches. I had to help her walk to and from the bathroom because of the dizziness. She started to get emotional but I helped her calm down. Karl got home from work at about that time and he helped cheer her up. I got her a snack and then she was able to settle in and go to sleep. (at least so far she hasn't gotten up again and it's been about an hour since I left her room).

So far since school has started (my post: Another School year, Another migraine) I have been able to get on top of a few things. We were able to get the bus scheduled at the right time on the right days ... although we have had to cancel every single day except today! lol... But Jess has a very nice bus driver who drove her last year and she just adores Jess. The monitor is very nice too.

Got the oxygen all set up at the school... again, she's only used it twice, but at least it's there.

We've been to see Jessica's new primary care doctor several times and we still like her. :-)

We will meet Jessica's new case manager next week. I don't know how much experience she has but I got the feeling while talking to her that I have way more experience than she does... I guess we'll get her trained. ;-)

I submitted the appeal to PHS for their decision to deny mental health services to Jessica. I still need to contact whatever doctors, etc to support my appeal.

We have an appointment with SSI to see if Jess qualifies.

We have talked to a couple of lawyers about getting guardianship over Jess and we've been told that the better route for our situation is to get medical power of attorney and durable power of attorney... it will save us time and lots of money. We have the papers and instructions but I still have questions... so I guess we'll be giving the lawyers another call.

Justen's diagnosis of Aspergers has really explained a lot... but we are still having some issues. Nothing huge or major, just enough to make life more interesting.

In the upcoming weeks Jessica has some tests coming up - nothing invasive just labs and sonogram, but it will keep us busy.

Be sure and check out Jessica's blog! I am helping her post something every day. She is so proud of it! Leave her a message there too. She gets soooooo excited to see who has visited it and what they say. :-D


Anonymous said...

Glad to hear that everything is going well... I have Migraines too (luckily not very often, but when I do my doctor wants me to take 2 to 3 Ibuprofen's every 2 to 3 hours) and sometimes get very sick (once for 5 days), so feel for Jessica there! I hope that all of the tests come back okay and that all of you have a wonderful weekend :)

~Tammy, Proud Mom to Zoe and Zurik

Nancy said...

Thanks Tammy, I have migraines on occasion too and my doctor just gave me a prescription for Imitrex and told me to take it as soon as I feel a migrain coming on. We'll see how well it helps me.

Jess can't take imitrex because of the constricting of blood vessels and she can't take ibuprofen because it could thin her blood and start the lung bleeds all over again. *sigh* Poor kid is in a tough spot. I don't want to give her more morphine unless I absolutely have to. Thanks for your sympathy tho.. migraines are terrible. Glad that the ibuprofen helps you. Have a great weekend too. :)