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Saturday, October 03, 2009

Sleep, Bad Meds, and the Bus


September was a blur of no sleep and work. And even now I don't have any business blogging. BUT so much has happened...

First, we figured out that her Protonix, which our insurance company will only pay for if we get it through their compounding pharmacist, was off. Dave took some out of the red bottle in desperation because Ellie has not been doing great since late August when she started this new batch, and discovered it had a distinctly orange hue. He called the pharmacist and they said to stop giving it to her...scary, no? I am sending it to a lab to find out what the heck it is and not putting her back on it. To say this freaked me out is an understatement. I am holding judgement until we find out if it is Protonix or something else...ugh. The whole thing has just made me realize I have to get her off all meds. I have met mothers who have discovered that the meds they are giving their children were made wrong by the pharmacy. CVS lost their compounding license because of errors in making the meds. In some ways it seems like only a matter of time before this happens and one day...I can't even go there. ugh. I wish we could get it through our local pharmacy because they are a mom and pop shop, they know us, they care....Blue Cross Blue Shield paid allowed this.

Since we discontinued the bad Protonix she has been sleeping MUCH better. I also started her on two homeopathics: Nux Vomica, for nausea and indigestion, and Gelesium for it's overall soothing effect on the entire nervous system. It may be working...she has slept through the last 4 nights....but of course now that I write this...anyway...am hoping I can replace the meds with homeopathy or anything else, like even healing what is causing her to need these meds...yes, her brain. But, it's good not to forget this is our goal, to help her heal her brain. Since Obama lifted Bush's bans there has been lots of progress in this area spurred on by all the returning vets who have sustained head injures fighting in all the bloody war zones....

Second, Ellie is going to take the wheelchair van to school this Monday for the FIRST time....!
The good here: she is more independent and we get 3.5 extra hours a day (that we used to spend driving her) to work. Since I am always up late doing that work I don't get done during the day, and I am not a trust fund baby, this is a good thing. The fact that I could REALLY use the extra time makes me feel guilty about even suggesting she ride the bus because it's so self serving, which is something I try to put aside being a parent. BUT she is going to be 7 in November. I rode the bus from age 5 on and am none the worse for it, though how would I know, really? See the back and forth? The mind is a terrible thing sometimes...

The manager of the bus company came to our house this Saturday morning to see if Ellie's Rodeo would work in the wheelchair van. His name is Juan. Juan has a big smile and kind eyes. He's a dad. Ellie gave him a BIG smile the minute he walked in the door and he addressed her directly. All great signs. She will be the youngest on the bus and Juan has it set up that she is last on and first off, god bless him! She will have an aid who is trained in seizures and CPR. The other little girl riding the bus has a nurse...seems like it might be ok. We are going to follow the van to and from school on Monday to be there for her if the ride was bad. If she is really upset by it, that may be it. She has riden in a wheelchair van for school trips so that won't be a first. Juan assured me the aid would talk to her and help her with her toys...ugh.

I am equal parts freaked out (about her safety and her emotional and physical comfort) and hopeful that it will be ok. She will be 7. It's time...right? We will see.

Picture: Me and Ellie in Dublin City Center, Ireland this August.

7 comments:

Elizabeth said...

I'm new to your blog through Ellen and look forward to reading more. I have a 14-year old daughter with special needs and am also a writer and advocate. I love reading that you use natural remedies -- we're "big" into all of that, finding it immensely more helpful than the 18 drugs are daughter has been on. I believe homeopathy, Chinese medicine and osteopathy have given our Sophie a far better quality of life. Anyway, I hope we can visit each other, often! And good luck with sleep -- I know what that's like...

Anonymous said...

of course you're the best judge of what Ellie can handle, but I would just say that just because she doesn't love riding the bus on the first day, doesn't mean it was a mistake to let her. Change is challenging for many kids, disabled or not, and it's through conquering fears and seeing that they really can do hard things that they gain confidence.

Kathryn said...

Elizabeth, that is wonderful that you got her off 18 drugs!!! We are down to 1 from 6 so you take the cake. I do believe natural remedies can be of use though you have to be careful about those (other than the homeopathics which are very safe).

Anon -we will give it a try for more than ONE day, of course. We are parents after all and understand you need to push your child at times so they can expand their horizons. But I can tell you I won't make her ride it for weeks if she absolutely hates it. I agree, she will gain confidence by doing this and independence - two really important things, which is why we are starting up with the whole bus thing to begin with. It's hard though, because unlike most 6 year olds she will come home and NOT be able to tell me much of what happens on the bus so I am in essence sending her on it blindly. She won't be able to communicate with me even the truncated incomplete script that a typical 6, almost 7 year old would - which is considerably more information. Not sure if people get how different that is if they have a typical kid or a kid who has good expressive language skills...it sucks basically and is a BIG part of why we have been putting this off. I don't think we are overly protective parents, it's just that our issues with safety ARE different. But that's hard to know if you are reading my blog and not living a similar life.

Kristin said...

WOW! Did Ellie grow 8 inches over the summer?! You both look great.

Katy said...

I'm starting to lean towards all-natural myself. In terms of healing, I've been completely caught up in a book called "breaking the vicious cycle" and really hope to start implementing it with Charlie.

The bus scares teh crap out of me. I taught school and the typical kids had bad experiences. You sound like you have a wonderful team going--a good bus driver and aide--perhaps i could handle the bus if we had all of that.

Ellie is getting so big!

Jo, Tamer of Monkeys and Keeper of the Crayons said...

The medication mixup made my heart jump into my throat just reading about it! That really is scary. I'm glad to hear that you caught it, and that no harm was done.
As for riding on the bus, that sounds like a big (but good) leap for you all. I hope all goes well!
By the way, thank you so much for the email. Is there a specific time that would be good for me to give you a call?

Kathryn said...

Kristin - yes I think that is right - it was about 8 inches...in one summer....it's the food I give her..;-)

Katy - thanks for the validation - "scares the crap out of me" is hitting the nail on the head!

Jo - evenings are best after 9 is better but if that is late for you anytime is good. Leave me a message if I don't pick up and I can call you back.