Some art to share

Yesterday Jackson and I busted out the watercolors! We made 2 paintings. One is for Grandpa Chuck who is recovering from surgery and one is for Great-Grandma Kate who is in the nursing unit at her senior home because of troubles with her legs. Jackson needs help holding onto the paintbrush, but other than that does the painting himself. I think they are beautiful paintings!

Physiatrist appointment and really cute video

Jackson had an appointment with his physiatrist a few weeks ago, I just haven't had time to update yet. We saw her at her main office instead of the hospital we normally see her at because I have major issues with their billing and refuse to go there anymore. Unfortunately, the other office is a much longer drive but whatcha gonna do?

It was a long (as usual) appointment but a good one (as usual).

We talked about his Shriner's appointment and she was kind of shocked that he sat for his spine x-ray also. She had the same thoughts as me about the goofy position contributing to the appearance of scoliosis on the x-ray and thought it would have been better to lie him down. But she said the Dr. he saw is world renown so he should know. Then she looked him over front, sides, and back and even sat him up to look too. And in some positions he looked totally straight but in others she said she could definitely see the curve.

We talked a little bit about his seizures.

We talked about the denials from insurance. I don't think I have blogged about this yet, but lately insurance has been giving us a lot of denials. Even though his dynavox was preapproved, now they are saying they will not pay for it...so they are saying I owe the provider close to $5000. I am not that surprised by it though considering earlier in the year they actually paid for stuff and then asked for their money back! Also, they were denying a new pair of AFOs for Jackson but they did change their minds about that one. She is going to write another letter of medical necessity for the appeal for the dynavox.

We spoke about how the drooling clinic at CHW recommended botox and I asked her if she could do it since we couldn't get it worked out for when we were there. She said yes, she would do it but would like for him to try one more med first. So she gave him an rx for ditropan. She said some of her patients say that works better than robinul (which he takes now).

She is going to write a letter for him to get a vaccine exemption. His vaccines are up to date now but when he turns 5 he will be due for more. Illinois does not have a philosophical exemption; the only exemptions we have are religious and medical. I am not sure what hoops we will have to jump through to get the exemption, but the letter will help.

Even though we think his tube site has been looking a little red and crusty lately, she thought it was so beautiful that she had to call the resident and med student over to check it out!

And I asked her if she knew of any medical insurance advocate services that we could use once we get J's vaccine settlement. It is causing me serious stress dealing with all these denials from insurance, and hopefully an advocate would be able to make the process a little easier.


Saving the best for last! Go check out Jackson's new video in his photo gallery. He has been singing to his music more and more lately. And he just loves to sing to this particular song most of all. I was so happy to finally catch it on video...I had a mouth full of crackers so I had to stop chewing to get it on video so you would not hear the crunching. LOL!

New seizure med

As it stands now, the neurologist is starting Jackson on a medicine called lamictal. The main side effect from this med is a really bad (and sometimes life-threatening!) rash. To avoid this, we are going to taper up very slowly, over 16 weeks. With the slow tapering up there is less than a 1% chance of getting the rash, but it is still something we need to be watching for.

He had his first dose last night, and he slept really badly which is common until he gets used to the dose and it will probably happen each time we increase.

The funny thing is that both the neurologist on the floor last week and the nurse I spoke with this week say it is "a really good medicine", but the way they say it just makes me chuckle. They have such genuine affection in their voices when they talk about it. I have not seen that with any other medication before, and Jackson has been on quite a few.

Halloween pics and more...

Jackson wanted to be a dinosaur for halloween this year. It was definitely not a good wheelchair-sitting costume with the spikes on the back and the tail, but it was what he wanted to be. He wore the costume to therapy on Tuesday and to school on Wednesday, but he decided he would rather stay home than go out to trick-or-treat. They had lots of fun halloween stuff to do at school anyway, and he doesn't eat candy so it was probably a good choice.

When we were at therapy, a kid came up to Jackson and was really checking out his costume. Then he says "Wow! He looks like a real dinosaur!" It was really cute!



Here are a couple pics from the hospital when he was doing his VEEG.


A few of my boy and his doggie...