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.