Saturday, November 27, 2010

Slow and Steady.

Well Turkey Day has come and gone. Turkey, Potatoes, green beans, sausage stuffing, more stuffing, sweet potatoes, apple pie, Pumpkin Bars...all so Delicious!
Madie is usually a pill at family gatherings and she sure delivered. We were lucky to get maybe a 45 min nap out of her but that was that. come and go with moments of being happy..*sigh. At least I was ablet to eat my food in peace.
We were all in food comas afterwards... the glass of wine at 3 did not help. I knew we had to get home and that Madie was not going to bed till 9.. that made me more tired!
Good Times. Great to see all the gang home from Mass(sister in law) and DC(brotha in law) making their cameo appearances and leaving a day or two later...
Madie continues to be pretty blocked up Poopwise...sometimes I wonder if she breaks into crying because her tummy is hurting. Her fits come and go...dont understand where they come from sometimes...but the poops are sure hard. Ya know kiddo, THE DIET would help soften them up?!! just sayin...
Oh and this Diet..reeeeeaaaallly slow start(s)...gave up for a couple weeks since she had a bad stomach bug and was having horrible diapers...NOW at this moment we are kinda back in the beginning...slow and steady getting her off her beloved Pediasure..once we have her fully on the diet (who knows when) we can see for a 2-3 months period (doctors tell us) if we see or DONT see anything different..
Still roughly once a week we see a large grand maul...and she is still bugged by Myoclonic Jerks and Quick Tonics...on a daily basis. As more and more time goes by I try not to loose faith that we will get a better grip on seizures. Will they go away?? Well..I try to think clearly and say probably not and try to just go into acceptance... Then I try with all my might to add a little positivity into that and say "maybe just maybe"...always a glass half empty kinda gal where hubby is the opposite..*sigh.
I feel a gut wrenching each time she has a bad seizure...since we really don't know what causes her delays seizures have been to blame. I feel like she is taking 3 steps back in her development each time she has one. She still manages to come out as same ol madie in the end...same ol Plateaued Madie. Mamas Angel.

Don't really have anymore news on the seizure front..
DID NOT go shopping yesterday. I do Panic horribly in big crowds.( I panic anywhere!) I went to Children's place and got my little baby cousin an outfit...then I was done. Whew, need a glass of wine to battle that mess! SO I wait a few days and go then. SOunds good to me.
Today nothing planned. Miles has had the whole 4 day weekend off from work and he heads out today to pick up an enormous SUV rental for his project on Monday but other than that. Just me and the kiddo. Hopefully she will be in a better moood. Think she had small fever yesterday dunno..which may have brought on the seizure she had last night..I blamed me giving her tylenol...but try to think otherwise. Oh and when I was taking her temp up her bum bum she proceeded to pee all over me....good times. HA
Story of My Life.
Hope everyone is well this weekend.
Well its looking like breakfast time, Tummy is rumbling.
xoxox mamas. (and dads :) )

No comments: