The Talk

Last week we went to Shriner's in Erie. Let me first say that if you have never been to Shriner's or knew of anyone who went or has been associated with this fantastic place, it is worth the effort to become connected. Shriner's Erie is the most wonderful place we have been thus far. We went for their CP clinic (though Evelyn doesn't have CP... close enough, right?). It was a great experience. There were probably ten different people in the room assessing, asking questions, and creating a plan for optimum care of Ev. This is SUCH a far cry from any other experience of compartmentalized health care we have been subject to in the past. One of the things we came away with, though, was "the talk."
"The Talk" was one I have been dreading for some time now.... and it had nothing to do with the birds and the bees..... it was about adaptive equipment/wheelchair for Evelyn. They say "Its time...."

And every orifice in my body was doing a primal scream NNNNNNNOOOOOOOOOOOOOOOOOOO.

Let me explain.....

I know the reason behind this.... and I DO want the best for my child..... I know that for the sake of keeping a straight spine..... and using her hands to their optimum ability.... and easier mobility.... and that just because we are getting a wheelchair, does not mean that she will never walk..... but the limits and stigmas that come with this decision are heart wrenching. She is already different..... and its just one more piece of normalcy that we have lost....

I know, I know, I disasterize...... I say things like:
But how will I do a wheelchair in my car? I like my car!
How will we go for walks out in the field near our house? Or off road on our back forty?
What will other children think of her? How will she play with them?
How will we modify our dinky 1860's brick farmhouse to accommodate one more piece of equipment?

I shouldn't feel like this. I love her and don't want to be selfish over silly things..... but I DID NOT WANT THIS FOR HER..... :( I don't want people to treat her differently.... or to pity her..... or to have her options of mobility limited so severely....

Stuck in a funk today....

Tomorrow will be better....

I guess I just wasn't ready for "The Talk"

Investing in Hope......

Yesterday was a tough day..... Ev was cranky... Mommy was cranky..... The weather stinks.... Not a good combination...

I think the thing that did it was that someone at work, after seeing a newspaper article about a little boy with a similar condition to Ev's made a comment. "So it says in here that kids without all of their cerebellum have better progress than the kids with some of it..... So... Ev has some of hers right? Huh..."


Instant Mommy Hackles

When I got home I was in the "Why Me, Why Us, Why God??!?!?!" stage.... and decided to clean (the make your skin peel type of clean...)

Shuffling papers from the desk I picked up the church bulletin from Easter Sunday (we are Christmas/Easter go-ers.... Sinners!) Anyway- I thumbed through it and remembered the sermon. The whole thing was about "Investing in Hope" and a lot of it made perfect sense.

Hope. What a strange concept? Wanting and believing. Investing... putting all of your stock in.... all the eggs in the basket... taking a chance in believing at something.... not knowing if it will give a return.....

So I decided to remind myself that I, Alicia, am an investor. I choose to invest in hope. The return is shakey and uncertain short term.... but the investment itself is a wealthy one for everyone involved. The market has its ups and downs..... and depressions.... but in the end, its all we can Hope for.

I am completely invested in Evelyn- in the hopes that she will continue to amaze us. All of my eggs are in that basket. The return is always something to be proud of.


Investing in Hope.

The Haircut and Easter and a Little More

My darling Miss Ev had her first haircut this weekend... and went from a little curly haired mop to what looks like a little old lady with a beehive (SOOOOO stinking cute.... but it sticks straight up in ALL directions?!?! :)

Easter came and went- we had a wonderful time at Aunt Roni's. The Easter bunny brought Ev so many goodies (a big choclate rabbit with momma's name on it??!?!). I look at this picture and am constantly reminded of how big she is getting.

Also- we went for the fist time to Shriners Hospital. We were SO impressed- we had the undivided attention for 3 hours from 3 OT/PTs who modified a variety of equiptment and sent up home with a custom stander. Wow- they are angels in disguise! We are goign to meet all day at their CP clinic soon.

How can 2 years go so fast?

OMG (at the risk of soundign like a teenager...)


This past weekend we celebrated Evelyn's 2nd birthday. Boy, have we come a long way! We had a "Pony Party" - our poor pony Missy gave rides and went around, and around, and around..........

We feel so blessed to have had an emotional but wonderful 2 years. Thanks and love to all!

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.....

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.

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!

Dundreamin's Website

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

http://members.localnet.com/~bockmier/dundreamin.htm

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..... :(

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!

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…..

 

Miss Ev- Gotta Love That Smile!