Got it.

It is a manual lift, not at all what I would pick myself, and the sling is also not my first choice by far not to mention quite large for him...BUT, it does work so YAY!

Here he is in our first attempt. He looks thrilled don't you think? He did laugh as I was pumping him up though.

Interesting...but good.

So just now the phone rang and it was Bob from RehabTech asking to set up a time to deliver our hoyer. (?!?!) I asked him if it had been approved and he said this was a loaner until we could get it approved. I guess all those (unreturned) phone calls made a difference after all. He is coming tomorrow between 1 and 3. Yay!! And I made sure this sling has head support.

I think I'll call Shriners tomorrow and see if I can drop off the other one in the morning. (No, I haven't given it back yet.) Otherwise we won't have room for the new one...these things are big!

Oooh, and that means I can call our respite lady and get that set up since they were waiting for us to have a hoyer before they started. We will get 5 hours a month of respite, with a possibility of getting more in the future. It will be nice to have someone to play with and hang out with Jackson a couple times a month.

Wow, this is amazing!!

We went on a little picnic this evening since it was a lovely day. I was eating a pear and Lee was eating an apple. Jackson started grumbling and I asked him what was wrong. He opened his mouth like he wanted some fruit. I asked him if he wanted to taste some pear and he said he did. So I bit off a little piece for him to taste. He opened his mouth so big for it and not only tasted it, but he also wanted to chew on it. He really liked it, although it made him drool like crazy. He had about 6-7 tastes of both apple and pear. He did manage to bite off a couple little pieces which we grabbed out of his mouth. I told him that we were all done tasting and we could do some more tastes tomorrow and he gave this noise that clearly indicated that he was NOT done tasting. It was so amazing and funny!

Some of you who may be less familiar with Jackson might be saying "what's the big deal?" so I will give a little history. When Jackson first got sick we did give him some purees by mouth and we did feeding therapy with him in hopes that he would eventually take more by mouth and less by tube. But as time went on, each time he would take food orally he would gag and vomit nearly every time. It was kind of like torture for him so we just gave it up. He has been 100% tube fed for years. We would sometimes give him smells of some foods if he said he was willing which would often cause him to gag. For him to request a taste of food is huge and for him to taste it, smile, and ask for more just blows my mind.

Still waiting

Settlement money: still waiting

Zofran rx: still waiting

Hoyer lift: still waiting

Hero Daddy

Lee has been a total hero dealing with trying to get more than 10 zofran pills at a time from our new rx insurance. He spent the good part of 2 days working on it, but the people at the rx company are complete morons who have no idea what the process is to get this done. They keep telling him different (wrong) things. Hopefully things will be worked out by Monday with it. And GEEZ!!! I am so happy I stashed those extra pills for him because Jackson would be miserable by now without them. FYI: This prescription would be over $4000/month if we were to pay for it out of pocket.

Lee is also getting a dose of what I go through since I am usually the one to deal with insurance issues for Jackson, which obviously happen a lot. I am really thankful that he volunteered to deal with this one though.

When we get the settlement (which I must post about separately-grrrrrr!!) there is something written into the lifecare plan called a medical administrator. The way they defined the medical administrator was really ambiguous and according to their definition we could get a medical/insurance advocate with that money. Then we would have a person available anytime to deal with all these time-sucking, mind-numbing issues for us...wow!

Stem cells...

An online friend posted a really interesting and encouraging story about a little boy with CP whose parents had banked his cord blood. Later after he was diagnosed, they were able to infuse the stem cells from the cord blood into his body via IV. After the infusion he made remarkable improvements in a very short period of time and continues to improve. He is not the only child who has had success with this, just the most recent in the media. Here is a story and video.

Anyway, this is being done at Duke University by a doctor named Joanne Kurtzberg. While we decided against banking Jackson's cord blood because of the high cost and the very slim likelihood that we would ever need it, we have decided that we are going to bank the cord blood of Jackson's sibling. While all the examples I have seen have used the child's own cord blood for an infusion, it is my hope that soon we will be able to use a sibling's cord blood for the same thing with similar results.

If you are not involved in a clinical trial, it is very expensive to do a cord blood infusion (about $12,000 from what I have seen) and of course insurance will not pay. Still, we will have the money from the settlement and hopefully one day in the not so distant future, we will have the chance to do this with Jackson.

Never thought I would miss Caremark.

Our new insurance rx plan is denying Jackson's ondansetron (nausea medication). They will let him have only 10 pills at once (for $15 a pop) which is only 1.5 days. Yes, it is an outrageously expensive medication but with our old plan we could get a full months worth for only $10. I guess I know what I am going to be doing tomorrow, hopefully we can get it covered somehow. He really really needs that medicine.

Luckily I do have a little bit of it stashed for a rainy day. Maybe a weeks worth.

Still have not heard back

I am seriously irritated (AGAIN) with this guy. Let's see...I contacted him on the 1st. He said he could find out what I needed to know and get back to me on the 2nd. It is now the 12th. I have called him multiple times and have still not heard back.

This happens every time with him! It makes me so mad! One time I had Lee call and leave him a message because I got tired of it and guess what...he called back right away! Jerk.

Place your bets!

I called our equipment vendor last Thursday to start the process of getting a lift through our new (as of May 1) insurance since it will be a while yet until we get the vaccine money. He said he would look into it on Friday and get back to me. Shockingly (<---read sarcastically) he did not call me back Friday. I waited until this morning to call him and got his voice mail. He did not call me back today and it is now 5pm. Shall we take bets as to when he will return my call? Or if he completely forgot about the fact that I called him last week until I called him again this week? (Not the first time that has happened.) Why do I not find someone else? Because it is really hard to find someone good who knows what they are doing. If I knew the next person would be better I would switch. It sucks.

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.