Now what did I JUST say about the federal government?

Yeah...it's going to be a couple more weeks (says our lawyer). Apparently it did not matter that the papers were filed, they had not been docketed so nothing was happening. They are finally docketed she says because she was crying on the phone with the court clerk. *SIGH****

Update on the lift and a new TLSO.

After much debate and phone calling companies and asking my online friends, I decided that the lift is going back to Shriners this week. My original thought was I was just going to purchase a different sling for the lift. I had one picked out that I wanted, and the lift it was designed for had a boom that was very similar to the one we have. Most of my friends thought it would work, but said I should call and make sure. So I called Liko (the sling manufacturer) and they said that they do not recommend that their slings be used with anyone else's lift (or vice versa) due to safety reasons.

OK, their slings and lifts are really expensive anyway (but nice!!) so my next thought was to call Invacare (the lift manufacturer) and ask what sling they could recommend that will fit our constraints that will work with our lift. They were RUDE and said they don't recommend products and said we should call a distributor. So then I called a distributor and THEY called Invacare and asked the same question and found out that they only recommend 4 slings with this lift, none of which have head support....I guess that explains why they ordered this particular sling for us.

So now, we are just waiting for the vaccine settlement money to come and we will use our out-of-pocket reimbursement to buy a lift asap when it gets here and then worry about getting reimbursed for that at the next court date. The money should literally be here any day now so it should not be long...but this is the federal government at work so who knows.

Anyway, Jackson got his new TLSO last week and this weekend we went out to purchase stickers to decorate it. He told me dinosaurs originally but he was not in the mood to help pick anything when we were at the store. He gave a smile to some monkey stickers though so I got those as well as the dinosaurs (but when he got home it turns out he really did want the dinosaurs). He gave a really big smile to the red letters for his name so we got those too.

He has not been tolerating his stander very well lately (he wants to stand, but has trouble once he is in it)so I tried him with the TLSO in the stander and he did a lot better. Next time he is going to be in his chair for a good stretch I am going to try the TLSO...maybe it will help with that too.

Never mind : (

The sling they special ordered for the lift has no head rest and I don't see how it is possible to use it to lift Jackson. I might add that this is a PT that should have known better.

We are getting our hoyer lift!!

So exciting, we are getting a hoyer lift tomorrow! I called Shriners a couple months ago to see if they had one they could let us use until we had the settlement money and could get one of our own. The PT said that they were getting a donated one in that we could use. She had to order the sling for it though and it came in today! Woohoo!!

We also had an appointment with the orthopedic surgeon at Shriners last week. His hips and spine look about the same as they did last time, although they are only doing x-rays every 12 months at this point.

He did order a new TLSO as his old one is getting quite short and a little tight. We got casted for it right there which was really different. He has never been casted for his TLSO before, the orthotist always measured him.

We are picking it up toward the end of the month. Jackson wants to decorate this one with dinosaur stickers!

Finally got the labs back yesterday...

So his keppra level was 12.8 and they like it to be between 10 and 40. His lamictal level was 4.1 and they like it to be between 5 and 20.

So they are bumping his keppra up (I would have thought they would do the lamictal) from 800mg 2x/day to 1000mg 2x/day. Maybe they think the keppra is better for the types of seizures we are seeing.

The nurse called back

just to tell us that the lab results were there except the keppra and lamictal levels were still pending. That is very strange after 10 days. So she said she was going to try to get in touch with someone at the hospital where they were drawn to see what is going on. She said she was going to call me back today on it, but I did not hear from her. Probably she was not able to find anyone that knew anything. Maybe we will hear tomorrow.

Still waiting on labs + update on vaccine settlement

I called today about the labs he had drawn last week. The nurse said she thought the doctor was looking at them and that is why they were not in his file. She said she would call me tomorrow to let me know what the plan is.

And the vaccine case is done and we are just waiting to get the money. I am told it should be by the end of April. We'll see. I am not holding my breath.

Announcement!

Jackson is going to be a big brother! Yes, we are expecting a baby due 9-27-08. Jackson seems to be happy about it when we talk to him about it. And he thinks crying babies are just about the funniest thing in the world so he will have endless amusement.

Got the EEG results

and it turns out he did not have any seizures during the test. But the nurse said that it did show he was "at risk" for having seizures. So we had to go Tuesday morning to our local children's hospital to get labs drawn so they can see if his medication levels are what they should be. We won't have those results for another week.

The good thing is that the lab tech got the blood with only one stick. And that they were giving away books in the hospital lobby as we were leaving so we got a free book for Jackson.

Seizures...

We have been waiting patiently for the results of the EEG. They said it would be 7-10 days before we heard. Yesterday (Friday) was 9 days so I called and left a message for the neurologist's nurse...but of course no one called me back.

I am pretty sure he has been having seizures and not the same kind he was having back in October, which were found to be sub clinical partial seizures. Not only have I been noticing seizures but the school nurse had called last week about them and the speech therapist had also noticed them. They are staring kind of seizures, sort of like the ones he was having a long time ago, but just a little bit different...it seems he is a little more conscious during these instead of just blank when he was having them before. Some will call them absence or petite mal seizures but they are not generalized (at least they haven't been in the past) as absence seizures are...so they are absence-like but not actually absence seizures.

That is why I am a little anxious to get the results. Hopefully Monday.

What a morning!!

We had Jackson's sleep deprived EEG this morning. We had to keep him up an extra 2 hours last night and then wake him up at 3:30 this morning and make sure he did not fall back to sleep. Then we had to drive to Milwaukee (still making sure that he stayed awake) to start his test at 7:45 am.

They hooked him up to all his wires and we brought all his good stuff (monkey, pillow, ipod, white noise)so he could sleep. But it can take him quite a while to get to sleep and I was afraid they were going to run out of time with the test before he fell asleep which would mean that we would have to repeat it another day. He finally (after about 1 hour) fell asleep and they were able to get what they needed from the test...yay!! We will not have the results for 7-10 days though.

I can not believe he did not sleep at all on the way back home!!!

Update

Jackson seems to be doing ok on just tylenol so we are not even going to worry about getting anything stronger. What a tough guy!!

Surgery is done and we are home.

Jackson had his surgery today for the vanished testicle (that is actually the technical term they use BTW). It went well. They were able to locate the testicle, and it was still viable (but smaller than the other) so they put it back where it belonged. He did well but you can tell he is a bit uncomfortable now.

We can not find any pharmacies that have his pain medication though. Of course it is Friday evening so that does not help. I think I will call the surgery resident on call and see if they can call in something a little less uncommon.

Maybe not something everyone will be as excited about

but I am pretty happy about it! Jackson is having solid poops for the first time since he first got sick! Wooohoo!! Since beginning to add real food to his formula, his poops have gone from nothing but water to somewhat more firm, but still not "formed". This week we have been adding even more real food and less formula and we have been getting poops that are actually formed. I am pretty happy about it!! I can't wait to get our (modern-day) Vitamix and then we can really go to town!

Surgery appointment yesterday

Jackson had the appointment with the surgeon at CHW about his testicle. He felt around for the testicle and said that he believes (but not 100% sure) that he felt the veins that feed the testicle. If he did feel that then there is a chance that the testicle could be there (although smaller than normal) but just hiding. Or it could be that the testicle got twisted somehow and died.

We are scheduled for a laparoscopic "peek" inside on the 22nd. Depending on what he sees, he will either go in and grab the testicle and tack it down where it belongs or if it is dead he will remove it. We are hoping it will just be a day thing, but there is a chance he will be admitted overnight.

We also met with the dietitian to get the "recipe" for Jackson's blended formula. When we get a Vitamix we will be all ready to start! Actually we did purchase a very very old Vitamix off ebay, but it is literally from the 60s I think, seriously old. But our old blender died (prunes killed it!) and we needed something to hold us over.