Wednesday, August 12, 2009

monkey on my

hahahaha me hangin out at the campsite...later to see this self portrait with a certain someone poking over my shoulder! LOL she was big sitting right behind me!

Neuro follow up went well yesterday..Madie was in OK spirits..tearing up the paper on the exam table and eating showing off her big girl sitting to Dr.D as well. She was very hungry and sleepy after and when we got home she did just that...ate and slept. :)
SOO heres the ice cream scoop kids...
He tells me that judging from just seeing her do maybe 3 jerks while we were there that they do infact look like Myoclonic Jerks..Well I tell him.."can we make sure with EEG?" Just so I KNOW that they are not spasms??
He agreed and tells me they can do an EEG come September and puts in the order for one...says to ALSO go up on the depakote by a mL at night...with hopes of nabbing the jerks in the butt...(that came out he was talking of getting her OFF her Zonegran! OK..super exciting! Madison has never been on just ONE drug...and if we DO get her off Zongran will she be OK?? now a brief history of Zonegran we began over a year gee...I wanna say 100 in the AM and 100 at night...(have to ask hubby on that one) AND now..we are down to measly 50mg per day! holdin strong to our "topamax" which was the only other drug she was on for over a year....(lol)
I feel it wont hurt...I mean if things get we see a big Tonic Clonic then we go back on...I wont throw away the pills for a couple months...kinda my rule of thumb...last BIG breakthrough we saw in May...but it was one time deal.
I feel what do we have to loose?? What does madie have to GAIN?? less drugs? I give a big loud "woot woot" to that!
We also talked about how great it was that madie was knowing how to get herself sitting...I told him that as far as walking I am still taking it one day at a time. Doctor looked with confidence and said "she will walk" and that it WILL take awhile (well DUH) and that she may be 4...5...6...but she WILL and that he was confident of that.
I asked him the possiblity of Spasms returning and he was saying that at her age not likely..she is almost 3 and the spasms rarely return then...OK..well I am not realy buying that but I agreee and go with his Myoclonic Jerk diagnosis...."at the mercy of the docs for sure"

SO anyhoo in other news that is plaguing me..DETROIT!...uhhhh 10am to 10am EEG...and PET scan...I am feeling that maybe we dont need to go all that way to have a PET scan...Now I kinda mentioned it to the Doc yesterday and I think EEG would be first on his list...feels that Madie really isnt much a candidate for a PET scan...I go back and forth...I mean if anything its good info...BUT go all the way to Detroit for it?? when maybe just maybe Hartford can do it for us?
....and now we are scheduled to leave SAT!! in just a few DAYS!! *sigh*
Ok well I guess that is all Ill leave you with...ponderin in your minds...eatinig you it has me.

Hope everyone is hangin in there...I guess that is an understatement...BIG prayers for Zoey and her family...big test results I belive today or tomorrow...:( :(
and a big girl hug to Reagan for making thru her eye surgery like a trooper!
and a big burst of jealously for Austin who heads to the lake with his mommy and daddy...good fun!! :)!!
...and ken...I tell really truely is that darn second guessing that is the hair we pull out of our heads! (0r in my case my eyebrows...LOL)!! AHHH!!!


Holli said...

So, the myo jerks are possibly just another seizure? Not necessarily IS?

Good luck with the Detroit decision. I know it's not an easy one to make.

By the way, Madie has come a long way with her sitting! I know she will walk too!!

blogzilly said...

If insurance covers it, do the tests at Detroit. They get better results in reading the stuff that they actually initiate. At least that's what they say. :)

Our Sweet Sophie said...

I'm with Ken...if you already have everything approved through insurance and you have everything set up to go...I would go. Because you don't want to be in the same boat 6 months from now wondering if you should go see him. But traveling for medical reasons suck. My final what you feel deep down is right without trying to rationalize anything (of course, easier said than done). Good luck.

Heather said...

Thank you for your prayers and support and loving words over the last few days,all the while going through tons of stuff with your sweet Madie.She will find her way.I just know she will.Keep the faith.