I wish I had something exciting to tell...I am pretty tired today...thought I could get Madie to sleep about 1 but that did not work..then bout 2 she begans to wine and I go into her room and she is sprawled out like she just had a seizure.."great" It did not help that iI worked a full day yesterday at work....
SO she eats a bottle and is NOW sleeping.... she has been a total grump today....sleepy...winey...gah!
Me? I get no sleep...sleep is for whimps. Tonight I plan on making some soup and watching my shows...if she goes to bed at this point huh? lol. allll this sleep she got!
Well anyhoo we have madie's new pediatritian apointmnet tomorrow...I am at the same time looking forward and not looking forward to what she says...how she will "report on" madie....at what age is she? I hate those labels! Like my "what to expect the first year" book...Aka...firewood...
...I know I want to hold off on any vacinations....for now...I am not against them but I am nervous about them....maybe wait till she gets older...eh?? or just get em done?? I dunno.....It seemed like her first year of life was so full of these shots...some were tolerated well some were late nights....with spitting up and tears...
MAdie just turned 2 yesterday...I know I should be so excited about this... a milestone for most kids...a graduation into toddlerhood....bye bye baby stuff! hellllo bigkid stuff!! So not where I imagined being...even last year when she was pumped on steroid shots and pretty much miserable the whole day...I would say "next year madie" next year" Neeever thinking that we would STILL be going thru this...OH I was ready to take her trick or treating!! Never imagined.
Madie as usual made out like a bandit with her cute little presents and outfits with dreaded hats from grandma....lol Now the hats are SO cute on madie...but she FLipps out when you put one on her head! lol! I think the Build-a-bear from Auntie was much more apreciated...lol
She has been quite the tantrum kid too...screaming when I put her down or when she is hungry and lays on the ground and arches her back and screams and tears come out!! gee wiz!! I am really going to have a tantrum kid on my hands...doesnt help that I am HUGELY overprotective of her...she is pretty used to gettting what she wishes....and snuggles.....(yeah have fun with that when she is 12!!!)
Oh my baby girl. she has been having good days for sure...but not seizure free days.... I usually hope for them closer to bedtime...so she will just go to sleep instead of sleeping the day away...but ya never know. I have another scary video of a seizure I may or may not post...but like I say if it helps people understand their own childs seizures...than Ill post.... still debating.
Zonegran is Zonegran...still at the same ol dose....clonopin as well....I am scared to try anyting differnet I am so sick of the side effects...is she just destined to be a zoned out sleepy kid?? Not if I can help it!! ( I like to keep the med update as well....I know exciting...) We see Neuro NEXT week...still no call from EEG folks for her 12 hour EEG...I am a bot frustrated about that hoping that we would have that done before we go in...."you know how it works"....*sigh*
ANYHOOOOO I had a blast from the past last night talking online to my best friends sister...now why her sister you ask? Well my best friend died from cancer in...I wanna say...2001?? I had been friends with her since I was 5... It was one of the hardest things accepting that I would never laugh with her again... or when I was married that she was not going to bemy bridesmaid ....or meet my baby!...Sadnesssss aside her sister is now a mom with a gorgeous baby girl and we talked bout life...(made fun of a few people....lol) it was nice. kinda my small connnection to my lost friend...felt a sense of calm...She doesnt live far but our lives are just so complex...its a tough one. I hope to somedya reunite...it would be something. I have felt that I have gotten to know her more than I ever did back in the days...and I think its my Friend's doing...from her litle sparkly cloud in Heaven....
WELL..... I will keep you all posted on apointments and any drama that unfolds...I have to go get Madie.... she is hootin! eeeek!! Errr maybe false alarm.... lol dunno!!
Hangin in there.
Thinking of lil Austin...any good happenings?? Oh and Cami just keep that fiber goin girlfriend!
Awwww our kids...gotta love em.
1 comment:
I'm thinking that you should probably insist on a bigger and better med. When Camerans seizures changed I remember those words her Dr said to exact. Well this is good news and bad news. Good news the I.S. was gone that was HUGE. Bad news, yes its another seizure form BUT they are so much easier to control. We started the Depakote and a few days later the seizures were a thing of the past. Once seizure free we then succesfully started to wean the other meds about 2 months into the Seizure freedom. SO I say ask for something new and demand a change. Zonegran was the IS med shoot for another! She is 2 now and should handle the meds better.
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