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Friday, February 29, 2008

It's a pathetic day

When you make the orthopedist depressed.
Dr. Feldman called me yesterday...
"Sara, why isn't his leg healing? It's just not getting better. How long has it been?"
Ummm...
Well it's been 8 or 9 weeks. Still not healed yet. It should be. So we are embarking on electro therapy for him-
EBI Bone Healing System

http://www.ebimedical.com/products/detail.cfm?p=0C

It might help him. It might not. It's worth a try.

He'd like him on additional Calcium and Vitamin D-but for whatever reason he can't be on it when he's not walking b/c he can get kidney stones. I really don't understand what the connection is but I'll believe him :)

And he said he might as well walk b/c hey it's not healing anyway but then he backtracked and said no he shouldn't.

And he also said we really need to see the ortho here in Chicago. So I called Dr. Grayhack's office. They're "squeezing me in" in 2 weeks at 1:30 in the afternoon. So not only will I miss an entire afternoon of work, but in all probability I will sit in the darn ortho waiting room for 2-3 hours. And leave knowing nothing more than I do already.

I'm waiting for the call from Dr. Feldman's office about getting the stimulator.

Break My Heart

Just rip it out....
This morning, we were talking in the car in carpool-my kids noticed another car with handicapped tags. We were talking about how we have the tag for Dovi, etc.

Elisha: "Mommy I wish Dovi wasn't handicapped"

So do I Fishy, so do I.

Wednesday, February 20, 2008

We spoke to the bone density doc!!

I had a lovely 45 minute chat with Dr. Pat today. Don't ask me what her last name is. I can't pronounce it. Neither can anyone else, hence the "Dr. Pat" But Dr. Feldman recommended her, so we're good to go.
She says that Dovi is on the borderline between osteoporosis and osteopenia-a score of -2 or greater is osteoporosis and -2 or less is osteopenia. And Dovi is -2. Hence the borderline. There are 3 treatments for the osteos:
1) Vitamin D and Calcium. Nope, not enough for Mr. Breaky Bones
Then 2 different types of bisphosphonate therapies. Let's back up here to recount Dr. Pat's very simplified explanation of what's going on here. There are two types of cells in bones: those that break down the bone and those that build it up. They break down in order to release calcium into the body. The body essentially uses bone as a bank for calcium, storing it (build up) when not needed and withdrawing it (break down) when needed. Bisphosphonate therapies work by stopping the cells that break down the bone at a cellular level, thus increasing bone density. Make sense?
Two types of bisphosphonate therapies:
1) Oral-ie Fosamax, etc.
pro: easy to administer, noninvasive.
con: easy to forget to take (once a week), not as experienced with children-mostly given to adults
2) IV-Pamidronate.
pro: used originally for kids with brittle bone disease for many years-known to be effective.
con: IV in the hospital every 3-4 months for 1-3 days.

Both of them cause bone density to steadily increase. An added bonus is that they increase vertical height! Excellent.

So we're between the Fosamax and the Pamidronate. Dr. Pat is going to talk with Dr. Axelrod and they will decide which to use for him. We're leaning towards the Pamidronate-while it'll be a royal PITB to go to NY every 3 months, we'll get to go to NY every 3 months! So we'll see.
When they make a decision they'll call us back to get organized.
Yay for a plan!! (or the beginning thereof)

X Rays

So I took Dovi back to Evanston yesterday for x rays. They are sitting in my car awaiting Fed-Exing to Dr. Feldman. Wasn't I snazzy-last time I dragged all the kids to FedEx I picked up a bunch more boxes/shipper pockets and prepared it all at home. Ahhh.... it's the little things.
I'm hoping he declares Dovi good to walk-b/c as Dovi says, "Mommy, I miss walking" to which I respond, "Mommy misses you walking, 65 pound hunk of D"

But Dr. Mom says they look good. Nice bone callous forming. Fracture line still visible but that's usually like that for a while even after it's healed.
Scary that I know that, huh?

Wednesday, February 13, 2008

New Realization

I realized that many of you know of my ever so slight Dr. Feldman obsession...but most of you have never met him. So here you go.

http://www.med.nyu.edu/clinicians/feldmd02.html

Enjoy :)

I talked to Dr Feldman

His leg looks great.
No he cannot walk on it-"Do you think that's a good idea Sara?" "Well I don't know Dr. Feldman, I'm not the orthopedist"
Xray next week.
Rinse.
Repeat.

Note to Steph

Yes, it is a bad time to mention the weather in Miami.
Go away.

Tuesday, February 12, 2008

I've decided

Hell is not a hot place.
It is the cold, snowy city of Chicago where it is snowing YET AGAIN.
If there is no school tomorrow I shall toss myself out a window.

So I realized

That in my new facebook obsession, I have compltely neglected my little fledgling blog. Sad, but true. I'll be better.
So.....we have a Dovi letter from Dr. A. It has the list of goodies:

Oxygen at night-yeeha! Lordy this should be fun. Good news with that is that it shold help us keep our Medicaid Waiver from the State of Illinois, aka the Cheap Rude Obnoxious Program Cutting State In Which We Reside. But the more equipment needed the better!

Sleep Study-oops we were supposed to do that last year. Better get on that.

Refer to Dr. Feldman for bone health plans, aka Operation Dovi Don't Break Any More Bones
So we're waiting for Dr F to talk with Dr A and Dr P (our newest doctor-a bone mineralization specialist-never knew they exist!) and Monica, Dr. P's nurse *should* be calling me tomorrow with THE PLAN...will update then.

Still waiting to hear from the lovely Dr F re if the bone is healed or not and if he can get walking again-b/c as Dovi himself says, "I miss walking" and Benjie fell carrying Dovi this morning on the way to the bus due to the ridiculous amount of ice in our freaking city. Global warming? I think not. Global arctic chilling is more like it. But I digress. We'll hopefully know ASAP about the leg.

Hmmm what else is new in Dovi-land? Well he sang in the Keshet Integrated Choir on Sunday night at the Keshet Dinner. He did a lovely job and is now insisting on sleeping in his choir t-shirt :) After the performance I kind of lost him for a while as two choir "buddies" (typically developing) from Schechter disappeared with him to find Robbie Gould, the Chicago Bears' place kicker (what's that?) who was there for a celebrity appearance. We were told taht one boy was pushing him while the other was walking in front going, "beep beep beep" :) But we found him, alive and well, hugging Robbie Gould. Gotta love it :)

Will update more as events warrent :)