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.

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.