Got our x-ray

We went Thursday to get the x-ray and the blood test. The x-ray was fine, as I knew it would be. We have not heard about the blood results yet, but I am sure those will also be normal.

Whenever we go to Children's main hospital, I always buy Jackson a balloon on the way out. This time we got a Thomas balloon. It was the first time that Jackson has shown any normal interest in a balloon. In the car on the way home he kept staring at in and even batted at it. At home, he loves to hold on to the ribbon and can actually hold on to it for quite a while. When it is not near him, he will twist and turn so he can look at it.

Here he is with his beloved balloon...

Talked to the nurse yesterday

Before Dr. S. tries Jackson on any other meds, he wanted him to have a leg x-ray and a CK blood draw. So I called around to get it set up and went and got that stuff done today. (They got his blood on the second stick, so not too bad.)

Also, he would like to talk to Dr. R., Jackson's neurologist, to see if they can together come up with a medication that would work. I am fine with that in theory. However, it can be damn difficult to get 2 doctors in the same hospital to have a conversation...I really don't know how long it might take for doctors in different hospitals in different states to talk.

I will do my best to help things along though. And hopefully we can get things moving again soon.

Ugh! No-go on the new med

Well, we failed another med.

On Thursday afternoon, Jackson was hugging with Daddy when he started to scream and cry. Jackson is a child that just doesn't cry and fuss unless something is SERIOUSLY wrong. It was very loud and very scary for everyone involved. Nothing could comfort him and he just kept on screaming and screaming for quite a long time. We tried to figure out what was causing him pain but we could not figure it out and obviously Jackson could not tell us. After about 10 minutes, we called the pediatrician and he told us to bring him in right away. He was still screaming when we got him into the car, but calmed down soon after that.

When we got to the doctor's office, he was grumpy but calm. The only thing I could tell that was different is that he had more resistance than normal looking to the right. (He always looks to the left, but normally we can get him to look right if there is a good reason to.) I also tried to help him tell me what hurt by using picture cards, but it didn't help.

Later that evening, I noticed his left leg was a little bit sensitive when we tried to move it. I knew it was the desipramine because it is in the same class of drugs as amitriptyline, which he took a few months ago, and it caused the same type of leg pain. I figure that his leg somehow got jarred while Daddy was hugging him and set him off screaming. We discontinued the medication Thursday night.

We are waiting to hear from Dr. S. next week to find out what the next plan will be. I'm guessing a different tricyclic, but I guess we will have to wait and see.

Medication Update

It turned out that the pharmacy couldn't find a recipe to compound the desipramine because it is very unstable when compounded, meaning it will go bad very quickly and we would have to get a refill every 5 days or so. So we ended up getting tablets that we have to cut into 4ths, grind up, and put through his tube. We started last night. From what I have read about using tricyclics for pain, it can take up to 3-4 weeks to build up in the system and make a difference so right now we are just going to wait and see.

New medication starting tomorrow

The EKG was within normal limits. The nurse called in the rx for desipramine to our pharmacy, but they would not make it because it needs to be compounded. Luckily we found another pharmacy close by that will do it. We will pick it up and start it tomorrow. Keep your fingers crossed that it will help.

In other news, we quit our Lekotek program. I did not feel that the Lekotek leader was doing a good job meeting Jackson's needs with the toys she was offering. I am going to get on a waiting list for a different program that will hopefully do a better job offering age-appropriate accessible toys.

Went to CHW motility clinic today

First, let me say I am so mad at our GI office here. They told me they were sending Jackson's stuff over there months ago and it turns out they never did! So they had absolutely no history or test results at all for him! But they did write up the order to get everything transferered there.

Dr. S. was really nice, and his nurse is the best...I really love her! We were going over his symptoms and Dr. S. asked if he had been vomiting every day for over 3 years, so I said not for three years, only since he got sick...and they both had blank looks on their faces, so that's when I figured they had no records and we had to start from the very begining.

He feels that Jackson's vomiting and pain come from the Central Nervous System...which I have been trying to tell our team here for quite a while. He said that we could do one of 2 things. We can either go ahead and do manometry testing. Or we can proceed with the assumption that it is CNS related and try some more meds to try to relieve his pain that way. He said if the manometry reveals damage, it would not really change the course of treatment much (if at all) so we decided to not do the testing at this point and just try some different meds for a couple of months. If things don't change we can do testing then.

Because we have already tried amitriptyline and had to quit it due to the side effects, he would like to try a different tricyclic antidepressant. So we went to have an EKG before we left (because this class of medicines have been known to cause arrhythmias). When he gets the results of that (should be 1 or 2 days) then his nurse will call me to let me know the plan and call in the meds to the pharmacy.

I also requested to see a GI there instead of our local hospital because we have not had much luck there in having them be responsive, taking Jackson's pain seriously, and obviously they can't be trusted to send records anywhere either. (Of course they couldn't believe we wanted to drive that far just to see a GI when we obviously have a ton of them closer...but I would rather go there) So when the nurse calls I will ask her which GI she would recommend.

Don't ya just love irony...

We just got a call today from the lady at Jackson's pediatrician's office saying that his e-stim machine has been approved for a 2 month rental. She faxed the papers over to us today. Woohoo!

Unfortunately, we just switched to a different plan beginning 1/1 so we have to start all over with the approval process again!

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.