The New Year's Beginnings

I finally have a chance to sit down and update the blog.... its been a while!

This year, instead of resolutions I am going to try to quantify our life in milestones of what we accomplished and images of whats to come....



1.) Evelyn learned to roll (one way... but still)

The good news is that she rolls- the bad news is that now we have to create barriers for her to do tummy time to strengthen those arms. Additionally, we learned that we now must be ever mindful of the fact that she can (and did) roll off of places she was once confined.


2.) Evelyn decided to eat (twice) and stop eating (twice)

I know for some this may not be an accomplishment but at least we know that when she wants to eat there is nothing physically that prevents her from doing so. The good part about being on the steroid for seizures was that it made her appetite ravenous. She ate everything in site. As soon as we weaned from the steroid, the seizures came back and the appetite stopped. Additionally, some of the behaviors that we are seeing are actually NAUGHTY :) which is a good thing because it means that Miss Ev is consciously making choices (even if it is to spit food at Mommy and Daddy).

3.) We made some great new friends.

As a family we decided to do something crazy this summer and take an inpromtu visit to Tennessee where we met some awesome people whose children have similar neurological conditions. It was so nice to be surrounded by people who didn't find it strange to go out to dinner and use a tube for our child's meds. If anything, they broadened our horizons and made us more aware that life must go on in some semblance of normalcy?

4.) Evelyn had seizures- we will be fighting this battle a year as of January 31st.

Okay, so this is not typically known as something positive.... and its not..... but we have been places, tried medications, failed medications, taken a lot of steps backward and a few forward. Are we in in a good place? Not sure..... but we know now that we need to move forward as a family.



Looking forward- things to do more or less....

I think its important to point out that we are still growing and learning- taking ten steps forward and seven steps back. In 2011 I resolve to take more deep breaths... beat myself up less.... love my baby girl more..... compare her to others less.... open my heart to possibility more.... put things on a definite timeline less....... allow myself to branch out more..... and be less fearful of others reactions


Peace, love, and joy to all in 2011. Hopefully I'll have a chance to update you all more.

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....

Accomplishments:
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!

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.

NOW WHAT??

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.

Arg.

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!

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.....