Tuesday, December 15, 2009

Hearing Test and Nuero Follow up

10:15 am. Im heading out to Madies hearing test in town...well one town over. I get there at our 10:30 sheduled time. The gal at the desk I remember from feeding therapy that I dropped out of...an overly cheerfull gal..
I tell her I am here with Madison for her hearing test for 10:30. she looks at me funny and looks in her computer and tells me that we are schedueled for the Weathersfield branch... UM..NOT driving to weathersfield and NOT thrilled.
"Oh (hee hee) someone must have changed it"
She scurried off and comes back and says that since we have a neuro apt at CCMC (ct childreans medical center Hartford hospital) that we can go there and get a hearing test instead..."ya know as long as we are there"
Well Nuero is not till 1 and its almost 11...I needed an hour to get there and park my car and check in at the desk...
She says that they can take us at 230 in Hartford.
I reluctantly accept.knowing that I may have an hour to kill at the hospital between apointments.,..hoping that one bottle is enough for madie..
At that point I had an hour to kill.

(bought madie a new winter coat..she has a ton but they are all huge)
I decided to go to Panera Bread and have some lunch.
I found a cozy seat by the fire place in the middle of the room and at that point madie was zonked out in her stroller..
An hour later and a few chapters in my book we were off.. I was so relaxed I has no motivation to go.
We get to Hartford 30 min too early... but we check in and crash in the waiting area. Madie begins to cry so I get a bottle made and she refuses...she ends up falling asleep in my lap.
When we are called in she is awake and happy...I give her a pice of the exam table paper to much on and she is content. not for long...
I end up getting a bottle down the hatch before the doctor comes in so she is full now. but still looking sleepy.
Its now about 130 and she had certainly had enough of this place
She cried alot while the doctor and I talked and I was growing sweaty and frustraited when I was trying to gather my thoughts and concerns for the doc we only get to see and talk to every 4 months!
He agreed that we should run some genetic tests on madie including Retts...Now he is not concerned that she HAS retts but the hand mouthing is just insane! I agreed. There are also a few other smaller tests we can test her for...uncertain what they test for but its a range of things. Dunno if insurace will cover it due to the fact that it can cost thousands for one test...So he was going to run it by insurance and see..to be continued on that one...
No change in meds...he did not seem too concerned about madie not eating AS much as she did on her banzel....stupid banzel...I had this kid eating 3 jars of food!! ANYHOOOOO... She has tolerated the med pretty well.. I told him that at times she doesnt seem as motivated to sit as she was so much before..I mean she still CAN sit but sometimes gets sleepy and just wants to lay down and make noises...
Not really much to tell about the drugs...they suck.
No Tonic Clonic Seizures in over a YEAR!!! GO DEPAKINE!!
Drop seizures have continued...not at the alarming rate they USED to be...but by no means cured.....VERY frustraiting!

Well with an appt made for 4 months from now we were done...madie was tired, I was tired...and we still had 40 minutes till hearing test.
Back to another waiting room. I sat with madie and she was crying and then I put her back in her stroller with her blankee that fell on the wet ground outside..(ugh) and she calm again.
They took us in pretty quick and it was not the 40 minute wait I expected...
WELL this test was a very simple one...for people who are NOT hyper sensitive about their ears being bugged..
It was a small plastic thing attached to a tube that had wires inside it that hooked up to this tiney box thing that hooked up to a computer...I guess measures vibrations.
Well one second of puting this itty bitty thing in her ear and that was that....crying so hard she was growling...angry cry. BUT the only way to get the test is if she quiets down enough to get a reading...OH yeah...easy.
Well we did get about 20 seconds of quiet out of her for each ear..SUCCESS.
OH man I was SO outta there.
Nope not yet.
Well the easier part came when we went into a creepy sound proof room and the guy sat behind some two way glass and said "hoo hoo Madison" "Over here" "Im over here" and then things above the speakers with creepy animals lit up and made noise...
OMG It took all my will power not to laugh.
She turned in the direction of the light up stuff but it was not the best test ever... then he said we could just go by what we had and it was all good
Now we were SO outta there.
We got home about 330 and I changed Madie (I had forgotten wipes) and fed her a bottle and some oatmeal and she was happy to be home.
Got her to bed by 8...whew.
Teething has not been great eaither...her cheeks were bright red yesterday as well...NOT helping.
SO that was the adventure. It was so great to be home...Madie watched some shows with her dad and I caught this picture...she has been so good cute when she "hangs on"

Well today I make some cookies and do some more laundry. Jealous? I knew it!


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