I sit here this morning tired to say the least..Madison would not go to sleep till 10 after 10..and to me, nightime is MY time...my time to take a load off..watch a show...have a glass of wine..read my book...anything!.. When I do not get this time it makes my day looong. Rise and shine at 630am..no matter what!Anyhoooo I come to read Austins blog and I am heartbroken..I want to cry with his mommy..I HAVE BEEN THERE. Last Feb we took Madie into Neuro for another EEG after the holidays her seizure had come back...after a month and a half of freedom...when we heard her spasms had returned I was blank. Upon getting into the car I break down..my body was shaking..I was paniced..I was feeling the most helpless feeling I have ever felt in my life! I looked behind me at my little one with her gooped up hair..eating her feet...smiled and cried more... Heres my poor husband trying to drive thru Hartford traffic....
I wish I knew when this will end..I wish I knew the best meds or the best diets..anything. I am just a first time mom who certainly did not sign up for this! You can read all the stories and some are good..some are bad..your head will spin!!
I remember all her tests comming back normal....Normal?? theeen whaat is wrong??? Its by far..hands down thee most frustraiting part of this whole journey.. The Spinal test was not bad! Its a scary one but they sedate them so much that they go thru it with flying colors..literally...and one little tiny bandaid on their backs...nothing gross and bloody I promise..its a great test to have come back normal for sure..:)
I remember thinking if we just get thru this Magic cure Acth we will get on with our lives and raise a little girl...
I am sorry if I sound like there is no hope...hope is the only thing that keeps me going..hope and the unconditional non-judgemental love for Madie..even from people I have never met!!!
Its not easy guys..I want to belive that my tears will be dried and someday Madie will outgrow this... I will stick by my plain of going to Disney when she is one year seizure free and walking. no doubt. It breaks my heart to a million pices!!
Ohhh we will get there...its so hard to belive that there is not cause for this!! there has to be someting in her brain that is causing this! if there is not anything in there than she would not be having seizures eh??
We are on 200mgs of Zonegran now and I am still only a few days into the increase...I like to give things about a week and a half...then if we are stiiiil seeing seizures..well you know the drill.
*sigh*
and *sigh*
Madie as stands is at a huge plateu in her development..its frustraiting...I am ready for the next step. Weee shall see... I will blog about her neuro apt at the end of the month as well to let you all know what he says.. We also have her 2 year wellness with her NEW pediatrician...a Developmental one I am excited that she was taking new patinets! Ohhh keep those fingers and toes crossed and DONT GIVE UP HOPE>>. We can all have our teary days and our "leave me be" days...but thru the stress and panic attacks we must go on.
The best we can do is love our kids..its the strongest thing I have anyhoo..dunno bout you!!
Today I am off to attempt to spend a 50 dollar Peir One imports gift card I got for my b-day...just not so much into the Mediterranean stuff or 20 dollar plates...oh and funny gourd shaped baskets!! gah!
hugs and hugs
Me.
1 comment:
Yeah, Jamie, it was heartbreaking to say the least. We were soooo excited about this new doc. We thought he would just waltz in there with his expertise and save the day! We were sent ALL over that hospital...and in EVERY dept they were handing me tissues. I'm starting to sort it all now...finally. REalizing that nothing has REALLY changed...yet. It was just a new, depressing take on his prognosis. It was no longer "well, all the tests are normal, his development is still good...it's a good position to be in". Now, according to the new doc, it's only a matter of time before we uncover the cause...which won't be good. AND, his development is going downhill. It's like I've been hiding my eyes so I couldn't see it...but I knew it was there. This doc just kind of ripped my hands from my face and MADE me look. It was worse than when we first got the dx. I didn't know anything about it then, and they certainly didn't convey how serious Austin's condition was. Our neuro even went so far as to tell me he wasn't severe at all. Now, the new one is telling me he has a 15% chance of being "normal". UGH!!!!!!!
But, like you said in your post...we have to hang on and keep hoping. It's just accepting what may be. We will get there, though.
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