It was still comming down...and the coolers were still on the deck.....someday they will be put away...*sigh*
We thought it would never stop!!
Madie had her Nuero apointment yesterday in Hartford...it was pretty well plowed so no bad ice driving and the sun came out full force melting any black ice on the roads..Took almost an hour to get there thru SO MUCH traffic! I tell ya with the snow over the weekend putting a huge delay on last minute christmas shoppers...and me traveling past the exit for the mall....whew.
Well we get there and they call us right in....Madie was weighing 22 pounds 8 ounces...dunno if that is a gain or what...maybe a few ounces... We are sitting in the exam room andI tell ya..this kid who was screaming and being happy the whole way in was deciding she was sleepy now...getting a little grumpy...We sat in there for a good 30 minutes with me trying to keep madie awake! Well Doctor comes in and we talk about where she is at with her meds...he wants more blood work done to check her Depakote levels and liver and all that fun stuff..we talked about her lack of sleep and he kinda laughed..told me of Melatonin....*sigh* heard of that....do I want things that make her MORE drowsy?? Has anyone tried that?? hmmmmm
He says that he feels good about her meds now and its not time to wien anything since its only been about a month S-free.....
Ok Ok I kinda agree with that...says that when time comes clonopin will be the first to go since its the lowest dose.. Soon kiddo soon.
She SEEMS in happy spirts....even perked up a little when doc came in so she was singing her bird noises and smiling and even showing him how she can bear weight in her legs...with support of course...BUT all in all I left feeling OK
I also talked about how just last year around christmas she was seizure free as well and then by feb....you know the story.... Well he says he feels confident that madie will be OK seizure wise and that we have found a good drug...Zonegran will be like our Topamax..a drug she will have been on the longest....Topamax was going on a year before we weined off that drug!! after that stuff she was instantlt more awake!! BUT since Zonegran cut her seizures by more than half we hesitate to think that maybe its working with depakote...hmmmm
Today madie has Miss Tara her OT comming at 930 and at 4 her PT comming as well..getting them over with before holidays...
Soooo as with all our little ones its one day at a time..for now we look forward to Christmas eve Lasagna at great grandma's house (we do eeevery year..lol) and a full day at grandma and grampa van noordennen's house for christmas day! I will try to get some pictures among the craziness...lol. I think I may go shopping at Target today for some last minute things...lol and some more photo paper!!(those pesky christmas photo cards..lol)
hugs mamas
:) :)
~J
*sigh*
2 comments:
I'm so glad you finally found something to get those seizures! Hopefully we're next!! Reagan still has the classic infantile spasms/myoclonic seizures (and the nasty hypsarrhthmia that goes along with it) as well as the occasional tonic and grand mal. YUCK. The higher we go with the Topomax, the more seizures she seems to be having! So frustrating!!! We also really want to get her off the Klonopin but her doctor doesn't want to make any changes until we know what we're doing with the Topomax.
Glad the Depakote is still doing its job! Maybe it too is the miracle drug for her like my Cami!!! As far as the Melatonin, we gave it a try for 1 month and in that time she developed lumps in both her breast turned out it was an EXTREMLY rare side effect to Melatonin and it was in a 60yr male at that. Leave it to my Cami to get the weird things on all of her meds. Anyhow many kids take this med its all natural its what your body is supoose to produce to help you sleep and some people lack it. So therefore enter in Melatonin! It didnt make Cami any extra drowsy. Once she got off of it her lumps went right away leaving her with an allergy to the med. Of course when she started on the Depakote she lost almost all of her thick long hair.....no lie she was bald in patches and her hair was super thin...I'll have to pull the pics, it broke my heart. They have her on a list of super sensitive to meds. Try bringing up Neurontin its a short term seizure or sleep aid. It worked for Cami's sleeping she went from 21-22 wakings per hour to now sleeping through the nights. She was only on the med for 3-4 months to get her into a normal sleeping pattern then they pulled her off of it and it worked!
But just hang in there enjoy the seizure freedom then next will be less meds then will come sleep! She'll get there :)
Merry Christmas!
Karen and Family
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