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.