Tuesday, June 22, 2010

Arg...Like a Pirate..... Walking the Plank

Arg. I try to remind myself daily to breathe- to really embrace the good things in life- and BREATHE. And usually I can make it through the day without havign to coach myself (one, two, three, breathe, one, two, exhale slolwly...). But yesterday I felt like a pirate- thrown off of the plank- into the cold, dark ocean..... and I forgot to breathe before I went in....

Okay- so the pirate analogy isn't a necessarily good one but the breathing thing is true. Ysterday at work I got a call from my mom....

"She's having some....ummmm involuntary movements.... " (my mom's so cute- she can't even say the word seizure... but uses some others pretty liberally)

Luckily I am only 5 minutes from home.

Here comes "Mommy-Pirate" to save the day. We give her Diastat- first time we have ever used it..... and....... NOTHING...... just a glazed-eyed-drunken-sailor-looking-seizure-having baby.


So I call the neurologist (it only seems like twleve hours to make it through the darn automated crap)..... and end up havign to take her to the local ER.

And in pirate terms, if the Children's Hospital in Buffalo is the ocean treasure with glittering gems and gold...... then we ended up in the supermarket puddle with a used up gum wrapper (still shiny but somehow something is missing???)

After three hours and a short conversation witht the doctor (seizures stopped about 5 minutes after being there). We are informed that the doctor's shift ended.... and he left...... What?? (Yeah, just left..... people actually FORGOT we were in the room until they walked by).

So after numerous calls to neurologist/pediatrician/hospital administration (yes, even I could not let that roll off like water on a duck- I am getting so assertive in my old age!) we have a "Plan Z" Which is pretty much the same as the all of the other letters of the alphabet.

Arg. Like a Pirate. Because no matter how much you are prepared for that water (Oh heck yeah, I can swim!) it doesn't prepare you for the shock of the cold- the shock of your daughter having a seizure AGAIN, the tiredness in your bones, the argusing and fighting with doctors to care, the hopelessness. Treading water..... hoping there's an island somewhere in the distance.... with beautiful tropical fruits, warm sandy beaches, and maybe a margarita...... someplace to call relief.


Tuesday, June 15, 2010

Mommy-Evie Days

The end of school and the beginning of "Mommy-Evie Days." :) Hip Hip Hooray!! Yesterday school ended for the summer.... not that I don't love my kiddos at school.... but we haev big plans for this summer. On our agenda:

1.) Work on getting mobile (Mommy AND Evie!) Let's work out those thighs so we both can fit into our pants. (No, seriously, I am NOT joking.... I had to buy her 3T capris as pants..... I know a lot of it is the meds.... but holy cow....)

2.) Drink from a cup! Crazy idea? We have been working 4 oz at a time- our goal is to eliminate night feeds!

3.) Play with horses (okay, so that's really Mommy's goal, but it will give Ev and Nonnie some time together!)

4.) Camp at Wellness GIFTS- so excited! http://giftsretreats.com/

5.) Sleep In!!! (Ha Ha)

Looking forward to a great summer!

Wednesday, June 2, 2010

And..... Failure.......

Ugh. Does it ever seem like two steps forward, five steps back? On Sunday we had a great day. Evelyn was intractive, smiling, laughing, playing, etc. On Monday we had a round of spasms that lasted about 2 hours...... one to two spasms every minute. It's hard not to give up the faith sometimes, especially since we had our baby back.... for a short time...... We are devastated, yet knew that this would probably happen. We are back on full-speed ahead with the shots of ACTH. We pray for an answer- or at least a slow for the neurological firestorms that plague our dear Evelyn. When it comes to times like this, I must constantly remind myself that there is only one direction- forward...... so it's that direction we will go.....