What a nice Christmas

We had a nice quiet Christmas this year, just the 3 of us. I think that this was the first year that Jackson (kind of) understood what was going on and got a little excited about Santa. He got a lot of books, a laughing Curious George, some computer software where he is able to "read" books by using a switch, a musical puzzle, some clothes, and a few other things.

My mom and her husband drove here on the 27th to spend a few days. Jackson really enjoyed seeing his Granny!

Orthotics appointment today

We had an orthotics appointment today. Jackson got to pick up his new AFOs (he got to pick out the pattern and colors of the straps) and a new TLSO. Then we hustled to the shoe store to get some new shoes to fit over the AFOs. I wasn't wild about their selection but at least we have something that will work for the time being. Then we went to PT/OT and we got to take home his e-stim unit.

We made 5 stops today. At each stop I have to lift Jackson (about 50 lbs with everything on) and his wheelchair (about 60 lbs) both in and out of the car. Usually I like to keep our trips to 2 stops. My back is really hurting tonight.

Why do things have to cost so much?

Today I spoke to the rep at Empi, the people who make Jackson's e-stim unit. I guess when they had told me the price of the unit last time I spoke with them, they were looking at the price of a TENS unit and not the unit we need. So it is going to end up costing us TWICE as much money as we had thought, which was kind of a lot to begin with. Luckily they do have a flexible payment plan and we can pay it over 12 months. So we will be bringing the unit home next Monday. The goal is to use it for 30 minutes daily.

A little update

Jackson's PT seems very determined that he needs a gait trainer ASAP, which I agree with. We have been waiting forever to get a trial of the Mulholland Walkabout. I am pretty sure that this will be the best gait trainer for Jackson's needs (most are not supportive enough for his trunk and head), but I really want to be sure. A gait trainer is very expensive and I don't want to get one if we are not going to be able to use it. Jackson already has a positioning chair that he is not able to use because it is uncomfortable for him.

We have also decided to go ahead and purchase the e-stim unit out-of-pocket (another insurance denial!) because I think it could really help to wake up, strengthen, and re-educate Jackson's muscles.

He seems to be doing ok with the meds changes...no noticeable differences yet, good or bad.

Neurologist appointment yesterday

Jackson saw his neurologist yesterday. It was a good appointment. We are changing medications. He is going to start taking a med called lyrica that will be replacing his neurontin. Hopefully the lyrica will be helpful both his controlling his seizures and also with his GI pain and retching/vomiting. We will be tapering up the lyrica while tapering down the neurontin over 20 days. Keep your fingers crossed.

Some bad news...Jackson's OT is leaving Loyola so his last day with her is the 18th. They have a shortage of therapists over there so chances are that he will be without an OT for a while unless we decide to change clinics. The good news is that when our insurance changes to a PPO we will have more freedom to go to other clinics. I guess we have some decisions to make.

Sharing Jackson's school picture

Because Jackson has to recline so much in his wheelchair to be comfortable, it is often hard to get good pics of him. He also will not often smile on command, and sometimes won't even look at the camera. I knew it was going to be challenging to get a good school picture of him, but thought I would try anyway since they had a money-back guarantee.

The first attempt did not turn out too well. In fact, they were so bad that the teacher called ahead of time to warn me about it. Here is what the first one looked like. Yikes! Yes, that is the teacher's hand in the picture! I am guessing she was patting him in an attempt to make him smile.
The retakes were a lot better. Apparently the teacher, PT, and the principal were all in there trying to get him so smile...LOL! I think it's a pretty good picture, don't you?

Jackson is doing a lot better today!

The antihistamine seems to be helping a lot. He is not as congested and is not producing so much mucous. He is still coughing, but he is not barfing all the time. He is also smiling more and ready to play.

I thought I would share some of the things Jackson has been doing in computer class at school. He uses special switch accessible software. His favorite game (I have been told) is Switch Wars, where he gets to blow up alien spaceships! He also can write stories by using the switch to choose from 2 different options. Here is one of the stories he brought home. He really loves to read them!

Jackson's sick.

He must have picked up a cold at the hospital when we were getting his GJ tube changed. Poor kiddo, with his GI issues a little cold can cause things to be so much worse than they normally would be.

We took him to the dr. today and she gave us a couple prescriptions. Hopefully, it will help. He has been pretty miserable.

Hi everyone!

Sorry for the delay in getting this new site up and running. I guess I just have to come to terms with the fact that I don't have the time to sit and learn how to make the kind of site that I'd really like to.

Here's what's been going on...

• We are switching insurance in Jan. from an HMO to a PPO because we have been getting denials for what we consider to be crucial appointments. We already have an appointment reserved (but not "scheduled" since they cannot schedule it until after our insurance switches) at the motility clinic at Children's Hospital of Wisconsin.


• Jackson has been getting PT, OT, and Speech at Loyola Medical Center. In PT and OT he has been trying E-stim. We were told that we had been approved by our insurance for a home unit, but someone somewhere got it wrong. There is still a small chance that we will be approved, but most likely we will have to wait until the vaccine settlement comes through.


• Jackson is doing well in school. He is working in the computer lab with switch accessible software. He is also working on communication using Boardmaker images to express himself. He seems to enjoy it and the teachers and therapists there think he is wonderful.
• We got a puppy! His name is Dizzy and he is a super-cute poodle/shih-tzu mix. He is a little hyper which is to be expected in a pup but he is mellowing a tiny bit.

Here are a couple Halloween pics for you.