Today I received the ruling on my appeal hearing with Medicaid (held nearly 2 months ago). The judge ruled in the STATE's favor and my $927 per MONTH (yes, that is nine-hundred, twenty-seven dollars per MONTH) "Spend Down" (deductible amount before Medicaid will pay anything towards my bills) stands.
Needless to say this is horrible news. I still cannot fathom how the State of Indiana can maintain that a disabled adult supporting another adult and a disabled child with just over $2000 per month has (in their words) "$927 per month excess income".
I need to continue to lobby to get the ICES Policy (policy for Medicaid among other things) on this matter CHANGED.
Don't stop praying. I am at a loss...
Love,
Claudia
Wednesday, July 2, 2008
Christopher's Surgery Went Great!
Christopher before surgery
Hi and thanks to all who prayed for today to go well. For those of you who don't already know, Christopher had to have dental surgery under general anesthesia today. All his major dental work (sealants, x-rays, fillings, cleanings) have to be done under a general due to his behavioral issues. We were dreading today, knowing that Christopher has extreme anxiety problems anyway (without surgery!).
Julia comforts Christopher after his IV is started
We were blessed to have my friend Julia drive us down and help Amy and I out. Christopher loves Julia so her presence was a real comfort. He was anxious, but did great at keeping himself from becoming self-injurious or from getting aggressive. He was able to verbalize "I'm afraid", which was a huge milestone for him in and of itself!
He had 4 baby teeth extracted (the permanent teeth were already coming in but the baby teeth weren't falling out), cleaning, x-rays and a phrenulectomy (removed tissue between his two front teeth). He came out of anesthesia looking like he had been socked in the mouth, but otherwise did quite well. He has 4 stitches that will have to be removed on recheck.
Last time he had this, we ended up back in the ER with an asthma flare up, but this time he seems to have rebounded well. We had a fabulous anesthesiologist (even started the IV herself) who, when told of the problems last time, gave albuterol to Christopher while he was still intubated. The only problem he's having now is pain (we have good meds for that) and HIVES. The hives have abated with 50 mg. of Benedryl. :)
Thanks again for your prayers! NO major meltdowns, NO puking, NO aggression, NO asthma flare! YEAH!
Love, Claudia
Sunday, June 22, 2008
The Mantises Have Arrived!
Christopher looking at his "bug kit" where the first mantis of the season is on display (later released safely...no mantises were harmed in the events described!)
A "close-up" of this summer's first praying mantis!
We are delighted to announce the birth of some baby mantises in our yard! Christopher couldn't have been happier to see the miniature version of last summers' friend! Stay tuned for further developments and pictures, I'm sure.
In other news, Phillip has been here for more than a week and we have been so glad to have him around (OK, give or take the screeching singing along with the Doodlebops or the chanting "Earth! Fire! Wind! Water! Heart! GO PLANET!" as he watched YouTube videos of "Captain Planet!).
Tomorrow a group from church will begin construction of a ramp from our back door to the back deck, along with removing our non-functional hot tub and replacing that part of the deck. I can't wait until I have a big old deck that I can go sun on! :) Thanks to Stock Building Supply and Matt Payne for the lumber and to the group from Union Chapel "Serve" who will do the work, along with an anonymous donor who paid for the railing and other materials we need. Additionally, the group will put up a small section of chain-link fence to complete the enclosure of our back yard in preparation for our Service Dog who will come home after the two-week training in late October!
I am getting a little bit of a tan, trying to go outside every day that it is nice and not too hot. This week has been fabulous! Like California without the "sun tax"! I haven't been sleeping well. I have a lot of muscle spasms in my neck, shoulders and upper back as well as over my hip bone (greater trochanter for those who care). Between the AVAPS (vent) hose and my pain, sleep is hard to come by. I bought an older electric hospital bed at a rummage sale (thanks to my friend Angela for scoping it out and calling me!) but the two foam pads still don't make it comfortable to sleep on. I need the adjustment of the head and feet to support my head and neck so that some of the strain is taken off, but the bed just isn't the right consistency. My friend Kent has a Comfort-Pedic adjustable bed and that is really what I need. If I had a queen size I could comfortably watch our evening episode of "Emergency!" with Christopher. As it is, we squeeze into the hospital bed. It is cozy, to say the least.
I am blessed that I can watch videos like that on my laptop with Christopher. It has become our nightly ritual to watch one episode of "Emergency!" and one of "Adam-12". If you don't know what those shows are (a) you're too YOUNG and (b) you can go to www.wikipedia.com and check them out. Both are spin-offs of the TV show "Dragnet" (SURELY you've heard of THAT!). Anyhow, it is a good "mommy and me" time for Christopher, plus I get to critique how much things in EMS and medicine have changed. It is a fun time for all!
I am leading an online group study of the Randy Alcorn book "Heaven" and I am so excited to be doing so. I have made so many new and wonderful "old friends" since leaving PHI. I wouldn't trade them for the world. I am BLESSED!
Hope you are blessed this June 22nd as well! Love, Claudia
Saturday, June 14, 2008
Update
Hi all,
Just a short update on all things "Claudia" -- LOL! Of course, that includes Amy and Christopher and my dear, precious friends....
Amy is doing great. Her face is almost healed and her arm is doing better. It has been an amazing process watching her skin renew itself. God is amazing!
Christopher is doing better. We have done some adjustments to his diet, added more consistent "sensory" routines (it's a sensory-integration thing) and he seems to be coping better with life in general. Getting his service dog earlier will help so much too! On the physical side, we've encountered a little "glich". In the last couple of weeks he has suddenly sprouted about 5 permanent teeth...unfortunately, the baby teeth are not loose and are not falling out. SO, on July 2nd we have to take him for surgery at Peyton Manning Children's Hospital (general anesthetic) to have those 5 teeth removed, a phrenectomy (gumline growing down between his front teeth removed) and his 12-year molars "exposed" (cut away the gum so they can descend). Doesn't sound like a lot of fun. Prayers are appreciated!
I'm doing OK. Falling more. My balance sucks.. of course it doesn't help that I have always been a person who is mentally three steps ahead of my feet....cause my feet aren't keeping up any more. I've got a few new bruises (and a shattered tower-fan) to show for my escapades over the past 48 hours, but I say "no blood, no foul"!
I'm doing an overnight oxygen test tonight. My trouble breathing is not getting much better and there is a possibility that I may go on oxygen. That is another dilemma, since oxygen is not generally recommended in ALS (the thinking of my lung doctor is that my breathing problems are due to my asthma, not my ALS).
On the bright side... I am slowly getting my bedroom decorated, thanks to the efforts of my friends. I bought curtains and now just need to get them hung. The walls are all painted and I am slowly beginning to hang my "things" on them. I am collecting old plates/saucers, etc with pink rose patterns on them to hang on the wall. Yard sale fans...keep an eye out for those 25 cent ones for me!
I am so blessed to have you as friends. Love, Claudia
A shadowbox I did with my mother's picture, a pair of her dressy gloves, a dried rosebud and some jewelry... I love you, Mom!
Wednesday, June 11, 2008
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