Here I go.. back to back blogging.
Well I just feel a need to vent...seeing there is no one here to chat with....
Pedi apointment went Ok..I left feeling verge of breakdown...I cried all the way home..I was a mess of eye makeup and sticky tears when I got home.
I feel like there is just WAAAAAY too much on my plate and I cant eat it all...I just keep stuffing food into my mouth and my stomach explodes...then more food keeps comming....
Madie is in the 2% for her weight now..in need of more calories and more fat...they want to run a test where they can see HOW she eats...weathor she swallows correctly and doesnt breathe her food in...and if she can chew... begins with a B...why cant I remember it??????? Then a G.I doc as well....Camerans mom is familar with THAT....eh? get that fiber goin girls!!!
In a nutshell madie needs to beef up...she needs calories and FOOD... I was given the adivce in the meantime to go buy some Pediasure...great....10 bucks a 6 pack.....ugh!! For the calories...and in the meantime wait for calls from all these specialists.....
Being told its baby steps twards all the goals we have for Madie and to not have unrealistic expectations of her...what is that supposed to mean??? Ok so madie will not go to YALE...we have established that...... Is it unrealistic to expect her to walk one day? Is it unrealistic for me to expect her to be seizure free one day?? These things keep me alive!! ANY incling that she will be in a wheelchair or NOT seizure free is UNACCEPTABLE TO ME.
Then she told me I needed therapy...."You need a support group she said" "or just someone to talk too" Looking at me like I was a mess.....(she was so pretty, she is an Indian woman wearing one of those pretty colored what do I call them....on her head..perfect eyebrows....lol)
yeah thanks...."story of my life"I wanted to say...
Then last but not least we vaccinated her with her last Hep B shot and her Polio....I promised her I would get no shots to today in the car......."oh like she knows what I mean"
It was tough..when you handed the plain truth about your kid....and that aside from seizures there is a WHOLE other ballpark of delays I have to deal with..once agian going back to the food on my plate.......whew.
I was just so overwhelmed when I left..I was a blubbering mess ..then as I am trying to pack up her stupid stroller the wheel falls off for the millionth time..I seriously almost threw it as hard as I could thru the parking lot..I had just HAD IT.Had it with seizures and THE STOOPID broken stroller!! Poor Madie girl sniffling thru her sore thigh from her shots....I gave her a smooch and closed the door to the car and we drove home...*sigh*
I can't even describe the overwhelming feelings I get..."like madies future rests on my sholders..and its up to me to do so many things??""
Take a breather mama...one step at a time...tomorrow its off to tarje to get some of this pedia sure with hopes that little madie will like it..who doesnt like shakes??
Till next time :)
3 comments:
Hi, I have commented a few times. I am sorry things didn't go as planned today. It is frustrating when we can't just wave a magic wand and make our kiddos better.
I know Pediasure is expensive. Does Madie only take formula now? Can you ask about adding some whole milk or heavy cream to the formula? Think almost like the high fat of a keto diet? Perhaps it may even help with the last of her seizures. Just a thought you could run past the pedi or neurologist.
The B word is probably a barium swallow study.
Good luck,
A *late* Happy Birthday to Miss Madie!
Hang in there girl...I know the dev pedi had to be tough. I've been avoiding it for just that reason.
It sounds like you're doing everything you can to get her where she needs to be. Keep up the persistence!
She will get there!
Keep us *posted*!! :)
Oh the test I know how you feel. If its not one thing its always another. Everytime we took Cami to the Dr we ALWAYS came home with something else being wrong, ALWAYS! I felt so overwhelmed. I would watch all the others parents walk out with their talking/walking children and would always ask why, Why cant Cami get there. Cami had a really really hard time with her seizures and then was put on a sinsitve list to meds because she would always develop the rare side effects. Then one day she stopped walking and was dragging on her left side. We thought stroke she was in the hospital for lots of testing. Turned out being Ataxia....too many meds(5 or them)! Then on that hospital stay I started to feel very sad and all alone. I had to go to my OB and she put me on a depression med and sent me to a Therapist. That was my all time low, I was happy, happy because I loved my children but sad because I knew something was really wrong with me it was so strange. My moods were everywhere. So never be afraid to get help whether its seeing your dr or just talking to a friend everything helps. Not saying you are depressed its just that overwhelming feeling you get and cant control and it seems hard. Going through depression was a very hard time for me but thankfully I had moms like you to help pull me through it. KNowing there are people out there experiencing the same problems as you makes you feel more normal.
Madies day WILL come, we are still on the road to get there but man has my girl come a long way at a turtles pace but we are getting there.
I'm here to talk anytime you need an ear! Hang in there and always cry it really helps!
Cant wait to read what the GI has planned.
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