Thursday, November 18, 2010

Pink Poodle

Ev went for Halloween as a Pink Poodle this year. Technically, we didn't go trick-or-treating..... but Mommy DID buy a 4lb bag of candy for the "trick-or-treaters." (Wink, Wink)

On Halloween and Why I'm a Dork

Apparently, I should have been a pumpkin farmer..... And because I haev no life (and a lot of pumpkins) I decided to do a tribute to my darling Ev. She was NOT, however, impressed with putting her hands in the pumpkin guts.

So..... its been a while....

Hi all! Its been a while... craziness seems to have taken over with school starting back up again for me... and the first quarter has flown by. Now that I have a few moments I thought I would share some more pictures and updates....

1.)Evelyn can now roll over one way! (Yippee!!!!!!!)

2.) She is no longer square- she is oval (for the longest time we were 30 inches and 30 lbs.... Dr visit the other day proved she was 31 inches...... :)

3.) She continues to have a complete aversion to eating. She enjoys spitting food... and she is getting pretty good distance these days. Thank God my walls have washable paint....

4.) We were seizure free for 3 weeks (hurray!!!) and recently started seeing more spasms again (bummer...) so we haev started on another steriod (NOT injectable thank goodness) so we are hoping that we increase eating and decrease seizures?

Hope all is well with Everyone!

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!

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.....

Friday, May 21, 2010

Today's Rainbow at Special Olympics

Today was Special Olympics for my classroom. It was a PERFECT day. The sun was shining, my kids were excited, and my mom brought Miss Evelyn for a bit to join in the fun! There in the middle of everything, we looked into the sky and there was a rainbow.

Now, I'm not too sentimental (who am I kidding?) but I honestly think it was a sign. A sign that things are goign to be okay. I came back into my classroom to work on lesson plans and found the "Hopeful Parent" site. I am hopeful. My soul is filled at the moment with peace.

When Enough is Enough....

Two doctor's appointments yesterday.... we waited for one for an hour and a half. and came back with no new suggestions. Which makes me wonder.....

when is enough enough? When do you, as a parent of a child with special needs, accept your child for who they might be. I am sad, and frustrated. We go to doctor's appointments every week (or nearly every week). We get the same feedback. Do really need to know how many months delayed my daughter is? Why can't people communicate? And who the hell cares anyway?

I told my husband on the way home that I am done. We need the neurologist, yes. I can see going to the GI people once in a while to maintain the tube. But we know our daughter better than anyone. I don't need someone to scrutinize her eyes, ears, tongue, toes, hair, etc, because to me she is perfect. It is what it is. There is only one direction to go in- and thats forward.

Does it make me a bad mom that I don't want to take her to umpteen million doctors? I can't decide.

Wednesday, May 19, 2010

Step Down...... Nervously

GREAT news!!!!! Yesterday Evelyn's EEG looked great! Only "rare spikes". Are we gettign somewhere? Its so hard to know- and we are so cautious to be optimistic.... So for now we are goign to every other day on ACTH- and so nervous we could die. Please pray for us!

Monday, May 17, 2010

Dundreamin's Website

Hi all! Dundreamin has a new face! Look for some theraputic riding in the future?

Friday, May 7, 2010

Primal Scream...... Ugh.

Sooooooo...... we met with Dr. on Tuesday..... she suggested taking one of the meds away... and we had a series of spasms on Wednesday morning. Three weeks was feeling so good! Ugh. Feel like we are back to square one..... :(

Friday, April 30, 2010

I Scream You Scream- Evelyn loves ice cream!

Guess who loves ice cream? After she polished off her dinner, she ate 1/2 of my whipped cream and 1/2 of Jay's ice cream!

Thursday, April 29, 2010

Testing, Testing... ACTH.....

So far.... we haev been seizure free for 2 weeks.... holding our breath....

Miss Evelyn has a bit of "roid-rage" :) and is crabby ALOT (which is difficult because she is not typically a crabby-apple!)

However.... she is an EATING MACHINE..... OMG- she wants food- her little mouth and tongue open like a little bird... and she wants to help shove the food in... HILARIOUS! Will keep everyone updated!

Ev’s Overalls…..


ev hair 2

Miss Ev- Gotta Love That Smile!


Evelyn 001

Ev’s Doctor Appointment… Grrrrrr… :)


ev angry

Hello and Welcome

Our first post for Miss Evelyn Elise :) Our precious baby darling. Hello and Welcome!