Monday, September 13, 2010

Rough Day....maybe a few F-words....:(sorry ahead of time)

Sometimes folks. Ya just need a good blubbering making a mess of yourself cry. Im talking like run out of tissues, use the last facecloth and resort to your shirt cry.

From making her usual noises...sitting next to mama...to me holding her convulsing in my arms..eyes wide and mouth wide body stiffened...just going and going and going..seemed to last almost 2 minutes. I just held her so tight and said her name over and over frantically hoping she would just snap out of it. I began to panic as I thought it would not end...pictured myself getting her to the ER with no carseat in my car as hubby forgot to take it out of his.... Well seeing seizures as long as I have I know that you just have to let them run their course...their damage...I should be used to seeing them by now....
I never can get used to seeing large ones...we see small quick ones alot but when the large ones come they are not often but they are downright scary "stuff"....
She was like a spagetti noodle afterwards. compleatly floppy. I held her and wrapped her in her blanket and let her just lay down....nothing else you can do...

Fuck You seizures. Fuck you Ketogenic Diet. Fuck you medications.Fuck you Insurace companys.. Fuck you. Just Fuck. just.....*sigh.

I wonder if she is comming down with something? Is it because the last few days I added some Duo-cal to her bottles for some extra carbs and calories since she was not eating too well (AGAIN)?? Ok Ok I get it...maybe too much carbs...ok ok Ill stop the duo-cal but do I have to pay for it for a few days?? Does madie have to? WAS it the xtra carbs?? Would this keto diet WORK?? just a small hunch...dunno...feel that was the only thing that changed!!
she was doing so well....
Ok so maybe its just one of those things that has happened...BUT WHY?
Well my Madie sadly had seizures that may never be tamed. maybe she will always have seizures..
If I believe that I will compleatly loose it. I HAVE TO STAY STRONG. I have to..(insert blubbering cry we spoke of earlier)
my Humbele apologies for using the dreaded F word...I like to keep my blog without that word...
When I see how Madie is when she is happy and wanting me to pull her to a stand and giggling and wiggling I know that things will be OK..that madie is telling me that she will be OK..that she can handle this. I mean I guess she already has...some days I feel like MAYBE she will outgrow this...maybe that is what will finally be her relief from this...
No understanding that mama has to try all these medicines to HELP her...making her once so out of it she was sleeping allll day ....and then one day I just had it..weined her off all but V.Acid...and brought her to life. Ok so we see maybe a seizure or 2 a day but were they ever compleatly gone@!? with more meds I think they were WORSE!

Put in a call tearfully to Nuero Nurses...who have really been awesome thru this...although pretty stuck in a dead end with her so called start of the Keto diet..which we coulda started in JULY!! BUT anyhoo.....put in a call and asked if we could maybe get her V.Acid levels checked soon..maybe she is getting low...gaining weight?? Maybe the med is just not working anymore?? maybe maybe maybe....screw maybes...

Sorry about the depressing blog....I hate these kinds...I also feel a certain weight lifted off me when I "write" about it..
I can hear madie making her silly noises already...30 minutes after that monster. Then only a few minutes later she is back to sleep...dunno..
Not asking for Prayers at this point..maybe some good faith sent my way..
I had an old friend tell me its not about believing jamie, its just about having faith.

:( Me

3 comments:

Dawn said...

My heart really goes out to you. I know exactly the kind of crying you are talking about and the "F word" is completely appropriate when directed at seizures.

My daughter has been seizing for 21years now. I realize that's a very scary thought for you right now which is perfectly understandable.

I still have days like this though they are fewer and far between now. I truly hope & pray that this is just a pothole in your road.

I guess I just wanted to let you know that there are others who completely understand and will yell "fuck seizures!" right along with you.

blogzilly said...

There isn't a thing in the world that anyone in the world could say to you today other than 'Hey...here's the answer and the cure for Madie's seizure's in this capsule' that could remove your pain and frustration.

But that's today.

Tomorrow? Maybe a different story.

This sucks for her, sucks for you both. And let the F-bombs fly as long as they need to. IN the end, sometimes that's all we've got left at the end of a day of Grade A Shit.

Sending good vibes, which means jack and shit I know, but sending them anyway...

ANewKindOfPerfect said...

Seriously. I think MANY of us drop the f-bomb when it comes to seizures. They fucking SUCK. :( I hate that she had such a big one. Like you, we get used to small ones daily ... but the big ones still slam me upside the head.

So no apologies, we all need to vent at times!