how many of your kids/RSS articles/insurance vent

[Guest guest]

Hello everyone!

I've been so busy lately and I haven't posted much. Xavier is averaging

at least 2 apts. a day and I have been dragging all three kids around town with

me to all of these! Thank god they are all so good natured, I really can't

complain about them at all, even though we are on the go and waiting around for

various Drs. from 9 in the morning until 5 or so at night. And they are only

5 and 4! Now the drs. on the other hand..they all seem to think they are our

only apt. that day and don't seem to think that a 45 minute wait past our

apt. time is going to screw up our day at all. Grrrrr..... On a positive note,

Xavier has gained a pound and a quarter since he was discharged from the

hospital on the 19th of Feb. This is a miracle for him, as he would previously

not

gain, or flat out lose for pretty much his whole life. He had only gained 5lbs

since he was born, and has only grown 6 inches. And he's 16 months old! But,

he is gaining weight, and I have seen a definite improvement in his energy

level..his eczema has even cleared up, and (drum roll please) he is sitting up

without support for a few minutes at a time! This is a kid who 3 weeks ago was

not able to do anything but lay on the floor and chew on rattles! And, I

know that you guys will understand my excitement on this...I think he is ready

to

switch up to size 2 diapers! He really could have still been in newborn

diapers all this time, (we had the tabs from the size one almost overlapping to

keep them on his skinny little butt!) but you can only buy those little packs of

them...and it was SO expensive to do that, so we went with the jumbo size 1

packs all this time. But, I think it's almost time and I am grinning from ear

to ear. Oh the little things I used to take for granted!

I've had a major wake up call as far as my insurance goes. It covers

nothing, is the most expensive premium I have ever paid, requires me to pay a

huge

deductible, co-pays and co-insurance, 20% of all final bills, almost all of my

prescription drug costs, won't cover his formula for his g-tube, only gives me

30 home health visits for a calendar year, (and with 8 apts a week, -4

different specialists twice each a week) that is going to be used up in 3 weeks.

Plus, I have to pay them each $20 every time they come out. That's $160 a week,

plus the drs. apts that we have at $20 a pop...how are we all supposed to do

this? Yes, there is social security and medicaid, (if you qualify) but how are

you supposed to scrape together the money to foot all these expenses until

then?! How do you guys budget all of this? It's very frustrating and a major

cause of stress...all of these things that are out there to help you take so

long to kick in, and everyone wants their money NOW. Ugh.

Anyway, I have been doing research on RSS and everything I can find that has

to do with it, and I was wondering, how many of your kids have a genetic

condition? I have read that RSS has been linked to a 7th chromosome anomaly,

(where you inherit two copies of the 7th chromosome from your mother, instead of

one from mom and one from dad) but for everything I read that supports this, I

find one that disputes it. But I'm wondering how many of our children have a

genetic disorder, whether it be on the 7th or not? Xavier does, he has an

addition and a deletion on his 18th chromosome. No one has been able to find

anything in the literature out there about another child who has had this exact

thing. (and it's hard to believe that he is the only one who has this but that's

what they are telling us). The RSS they say, is in addition to, but not a

result of, the 18th chromosome anomaly. When I was pregnant, they told us the

closest thing they could compare to what he had was trisomy 18, where the child

does not survive more than a few hours or days after birth. That is what we

had been prepared for when Xavier was born, although there was some puzzling

hope because all of the ultrasounds I had after my amnio confirmed the problem

showed him to be normal, no physical abnormalities, everything was where it

should be..he was " just small " (I hate that phrase now, it has been used to

describe every problem he has ever had) Then when he was born, after all that

lead up....we went home in 24 hours! No one had been able to pin-point what was

wrong, and it was just now that he has been treated for the " failure to

thrive " " global developmental delay " " various gastric ailments " and " growth

delay's "

that he has. (RSS without the name?) Everyone seems bent on getting a

geneticist to diagnose him, but why? There is no clear link between genetics

and

RSS. Just fitting into the range of symptoms that all of our kids have. So

anyway, I'm just wondering how many of our kids do have some sort of chromosome

abnormality. Call it a pole. Just out of curiosity.

Also, I keep seeing you guys talk about articles on the MAGIC website..where

do you find them? I was looking on there today and did not see where they

were, but maybe I'm just tired and it's staring me right in the face!

Thanks for letting me blow off a LOT of steam!

Jen

Xavier 15months, 14lbs, 27in RSS, G-tube, Fundoplacation, 27 cal Formula,

Myrilax, ST, OT, PT, FT

Emerald, 5, Non RSS

Wyatt, 4, Non RSS