Friday, May 30, 2008

An update in the life of D many fun things to tell you all:

Dovi had a sleep study last Sunday night. He flunked with flying colors. His oxygen levels stayed high enough, but he had multiple, multiple hypopneac episodes (similar to apnea) and his CO2 levels were quite high. Hence he will need to go on BiPap-we'll see the sleep study doctor in June to determine the settings.

Dovi's ankles are still swollen. No, we have not heard back from stinky Dr. Feldman yet (yes, it's been over a week)

We get to go see another specialty:
Dovi needs the Pamidronate infusions, which for whatever reason, has not been able to get coordinated to be done in NY-so we're doing it at Children's here in Chicago-through the endocrinologist.

That's all for now...

Thursday, May 22, 2008

I rock!

Two reasons why I ROCK today!
1) I found a pair of shoes I liked for Shana on zappos for $39. I searched and found them on for $27. Then I found a coupon for 15% off and free shipping. Total cost? $23. I rock :)
2) yesterday was Dovi's 3 year eval at Keshet with CPS. OK so I sucked yesterday when I forgot about it, had to RUN out of work, was conferenced in for the first 45 minutes, and showed up an hour late. But they told us they were only going to pay for Dovi's 1:1 for a half day. Why? B/c he only needed the 1:1 when transitioning, or going to the bathroom, etc-but not when sitting in the classroom. ummmm....

So it was my turn to talk. I said: "So you are suggesting that Keshet hire an aide to come from 10:15-10:25, 11-11:30, 12:05-12:25, etc? I would not take a job like that, and I do not think that you would either, Miss Chris Carter from CPS" then I went on: "And I would also like to remind you that we have gone to litigation in the past with CPS. I do not think this change is acceptable and I will not hesitate to contact my attorney again"

I also inquired who made this determination. Chris said that the nurse from CPS who observed him him did not thing he needed a 1:1 AT ALL-but she, Chris, out of the goodness of her heart, convinced the powers that be to pay for a 1:1 half day. I then asked for a copy of her report (the nurse). Chris said she did not have one-the nurse's opinion was noted on the eligibility page. I said "Wow-so the nurse who made this decision after observing Dovi for 1 hour made this determination but we have no paperwork. I don't think that's acceptable.

I remained 100% calm-as opposed to the Medicaid hearing! According to the staff I was eloquent and calm. So eloquent in fact that Dovi's teacher went back to the classroom and cried.

They called Keshet today. They've "changed" their minds and are paying for the 1:1 full time!
GO ME!!!

Monday, May 19, 2008

Our Exciting Weekend...

Never a dull moment, I swear!
On Shabbos afternoon I took Elisha, Shana, and Jakie to the park, leaving a tired D home with Benjie. I was very proud of myself-we spent almost 3 hours out, and I figured I'd come home to Dovi numming on the floor and Benjie asleep on the couch. Instead, Benjie met me outside with "We have a problem"
Never good words to hear when associated with Dovi.
It turned out that Dovi's arm (recall the MRSA incident) was red and puffy. Not insanely so, but definitely noticeably so.
Our next door neighbor who is a doctor looked at it and said "He has cellulitis. Take him to the ER after Shabbos"
To which I replied "I hate you Boruch."
Shabbos ended.
Benjie headed out with the boy ("here we go again", said Mr D over and over)
He called me from the ER. Yup, they were admitting him-the Peds Resident took 1 look at his arm and said "admitting". FUnny sidebar-some of you might know I do this Project DOCC thing from Children's Hospital-click for more info
. I've done 2 home visits where a group of residents come to your house and you scare the suckers with all you do for your chronically ill child. Well the resident was like "I know you!" Sure enough, she'd been to our house!
So either way, we spent a lovely 24 hours in Evanston while he got IV antibiotics, his arm responded beautifully, and they sent us home on oral meds (I need to go pick it up from my beloved Target at lunch) and he's just fine.
And the other resident who we saw on the floor insists to me that there is no connection between this arm incident and the MRSA in the EXACT SAME PLACE 2 months ago.
Yeah Right.
I don't believe her.

Friday, May 16, 2008

20 X-rays

Yep, you read right. This morning, Dovi had 20 x-rays taken of his lower extremities. He is walking very strangely-pronating both his feet really badly, unsteady, and unable to stand either on 1 foot, both feet still, or get up from the floor without assistance. We need to make sure nothing anywhere is broken or messed up. So Benjie took him this morning for literally 20 x-rays, which we are Fed-Ex-ing off to Dr. Feldman today....


We have embarked upon the brave new world of orthodontics...I'm trying to remain calm and not contemplate the impending expense...
We went for our initial consult yesterday-and Dovi was an angel!
They took x-rays, photos, and impressions-and he was sooooo cooperative-I was flabbergasted.

And for the honor of the technician shoving banana flavored goo in Dovi's mouth we only had to pay $390.
That's the cost of the Rommba and the Nav for my car that I want. Put together.

Tuesday, May 13, 2008

Target vs. Jewel

Some of you have been lucky enough to hear my rants every time I used to go to Jewel to get Dovi's meds. I've actually cried at the pharmacy counter. You also might recall a few months back when I went to Target for Shana's strep meds and how loverly they were to me, and how I was going to switch Dovi's 8 million meds over, but was a bit unsure due to the lack of open 24 hour-ness of Target to accommodate my and Benjie's habit of running to get meds at 11:30 pm (ok, Benjie running after I sit bolt upright in bed and realize I forgot to pick up Dovi's morning meds).
So I switched-and decided I MUST be more organized-no more midnight med runs.
I know this is such a little thing-where you get your meds. But for a family that picks up 11 prescriptions per month, it's HUGE.
And Target is MAGNIFICENT. AMAZING. They are NICE! They are HELPFUL! They are TIMELY! It's honestly amazing how different it is. I walk in. I get the meds. I leave. They have them ready. If there is an issue, they have called the Medicaid office without me having to ask them! It's so insanely different. I can't believe I've waited this long!

Can you imagine it-a NICE pharmacy!

I was wrong

A very helpful anonymous commenter corrected me:
Illinois does not rank 45th in services to the special needs population.
Illinois ranks 51st (include District of Columbia)
As in dead last.
Why do we live here?

Thursday, May 8, 2008

So with the clarity of a new day

I have realized that yes, I totally, 100% lost it at the hearing today. I was seriously out of control. Psycho. Insane woman. I really thought I might have a stroke, my blood pressure was so high. I was NUTS.

And first I was feeling bad about it. I wish I could be one of those cool, in control type of people-taking my sedate notes as the "doctor" talked, waited my turn nicely and politely, kept my freaking mouth shut, and participated (ok I'll admit it) politely. I kind of felt like a fool.

But then I realized-that's not me. I am not sedate. I am generally not cool and collected. I wear my heart on my sleeve, and am certainly not...shall we say...sedate. Sara P=not sedate. So maybe I screwed up-maybe I was TOO emotional. I probably was. But if I am guilty of loving Dovi too much, and caring too much when someone insults my child and all that he goes through on a daily basis, so be it. But that is me. And I don't think I can apologize for that. I've come to the conclusion however, that I would be a crappy person to have to defend in a court of law, because I cannot keep my freaking mouth shut. Let's hope we never need to go there-if they deny us this appeal, we can sue the State of Illinois in the Circuit Court. At which point I believe Hal would only agree to take the case if I would wear both a straitjacket and a muzzle.

Wednesday, May 7, 2008

Madness I Say, MADNESS!

I honestly believe that I blew capillaries in my cheeks. Literally. Our hearing today was possible the most traumatic event I've ever experienced, short of the day Dovi was diagnosed. I kid you not.

Today, as I told you all, was our hearing with the State of Illinois regarding Dovi's eligibility for the Technology Dependent / Medically Fragile Waiver, which entitles us to Nursing Services, and by extension, Medicaid. As many of you know, Illinois ranks something like 45th of all the states for services for the disabled. We were informed by the State in October that they were not renewing his Waiver eligibility. It was unclear as to WHY he no longer qualified-and the lovelies refused to tell me. Until I enlisted my handy dandy Alderman's Office, who got me the scoop: evidently b/c Dovi had started eating some food by mouth he was no longer considered Technology Dependent, and b/c his blood pressure was somewhat under control, he was no longer Medically Fragile. Nice.

I guess we could ignore the technology of fluids by g-tube, 50% of calories by g-tube, aug comm device, EBI bone stimulator, wheelchair, etc, and the fact that he has a rather severe case of FD as his medical fragility. Yay! he's eating some food! Kick him off the waiver.

So after 2 postponements, off we went to 401 S. Clinton today for our hearing. Present were: me, Benjie, Hal (our previously mentioned attorney), the hearing officer, and by phone, the doctor from the state who made the determination as well as some type of nurse-I'm still not 100% sure what her role was.


I honestly thought Hal was going to KILL me (sorry about that, Hal) when I literally jumped out of my chair and said "That's a LIE" when the "doctor" informed the hearing officer that
1) Dovi does not use his g-tube anymore
2) FD is a common disease
3) Dovi has a mild case of FD
4) Dovi doesn't have FD crisis ever
5) Dovi doesn't have most of the symptoms of FD.
6) ooh this was funny-he must not be severe b/c if he WAS severe he would not have been able to survive a surgery as involved as a scoli repair, and since Dovi had it twice, by extension, his FD is mild. Honestly. The man said that.

OK. I got a bit out of control. Maybe the red face, tears rolling down my cheeks, and arm flapping was a bit much. But HELLO!!!! This guy was flat out LYING!!!!

We came armed with mucho ammunition: letters from both Dr. Axlerod and Dr. Maurer listing item by item both Dovi's Medical Fragility and his Technology Dependency. The most recent yearly letter from Dr. A where she talked about how the nurse is keeping him healthier etc.

The doctor REFUSED to admit that possibly, just maybe, Dr. Axelrod knew more than him. He actually had the gall to call himself an expert in FD. Hal pinned him to a wall:
"Are you, Dr. Kim, saying that you DISAGREE with the assessment of Dr. Axelrod, Director of the Dysautonomia Treatment and Evaluation Center and worldwide expert on FD that Joseph is BOTH technology dependent and medically fragile"
"Yes. I disagree with that assessment"

Another little pearl:
"It is impossible that Joseph has all the symptoms of FD. If he had all the symptoms, he would have to be hospitalized."

My little gems:
"I would like to address the statement by Dr. Kim that FD is a common disease. Joseph is case 512 out of 623 people in the world with FD. That is not common"

"Joseph is dependent on his g-tube for 100% of his fluid intake and an average of 75% of his caloric needs. If we removed Joseph's g-tube today, he would be dead by Saturday, either by dehydration or aspiration pneumonia"

"Joseph had to have scoliosis surgery in 2005 because, left uncorrected, his spine would have curved into his lungs, impaired his lung function, and he would have died"

"Joseph is considered, in reality, to be severely affected by FD"

End result:
I have no idea how this occurred, but this is it:
The nurse is contacting DSCC (the agency that administers the waiver) to request additional medical records from his latest hospitalization. I honestly have no idea why his MRSA hospitalization is germane to the medically fragile technology dependent issue, but heck, enjoy the medical records.
IF there is to be another hearing, we will be contacted by our hearing officer as to when it will be. However, she did indicate to us that there might not be (as in we are right and the idiots in Springfield are wrong)-but if there is, it will be in either June or July-but she seemed to be of the opinion that there probably won't be.
This was basically their way of ending the hearing without conceding that we were correct. It was honestly ridiculous how we ripped that doctor to shreds. I almost felt bad for him. Then again, maybe not.


I have been told that I am a bad blogger. And in surveying my paltry (ok nonexistent) offerings for the past 5 weeks, it seems that I am. I'm just not sure I'm into this "Spill out my heart for the universe to read" blog thing. But I shall try to be better, especially with Dovi's life and craziness. SOOOOOOO:
1) Dovi is now walking with a walker. Correction: Dovi is running while carrying his walker in front of him. It's actually rather amusing to watch-the walker is so pointless, but it's to remind him to be careful. OK. We're on it-actually, it's usually me, running after him, yelling: "Dovi, slow down! Put down your walker!" Stop by our house Shabbos afternoon and witness it for yourself in our front yard, aka the baseball field.
2) We are on Walker #2-the lovely children, Dovi included, for some reason, are obsessed with climbing on the walker. They sit on it. They hang from it. I am constantly removing recalcitrant children from the walker. I seriously cannot figure out the allure, but they just cannot stop themselves. They managed to break a screw out of Walker #1 in a manner that the Home Health Rep had never seen before. Talented, my children are :)
3) Today (in 1 hour 15 minutes to be exact) is Dovi's Hearing with Medicaid/State of IL for our appeal as to Dovi's medical status-that yes, he is both technology dependent and medically fragile, and thus, YES, he qualifies for the State of Illinois Home and Community Based Waiver Program for Technology Dependent Medically Fragile Children. We are taking an attorney with us ( he defends rapists, murderers, and the P famliy-nice!) He's also our neighbor and an all around great guy. Hopefully it will go smoothly and the dummies in Springfield will LEAVE US ALONE!

So that's where we are holding. I promise to update after the hearing.

Now if anyone is actually reading this, I hope you enjoyed.