"We witness a miracle every time a child enters into life. But those who make their journey home across time and miles, growing within the hearts of those who wait to love them, are carried on the wings of destiny and placed among us by God's very own hands." ~ Anonymous.

Friday, June 25, 2010

Two years....

...that you've been waiting

...and we've been trying

...that you've been suffering

...and we've been hoping

...that you've been alone

...that we've been praying

Happy birthday, sweet girl. Thank you for being strong. Thank you for being patient. Thank you for keeping your spirit in spite of your circumstance. I hope one day that you will feel the love of our family. I hope that you will look back and realize that even when you were all alone, we never stopped thinking of you and fighting for you.

Your brother (with a little help from Mommy) made you a wonderful purple cake. Hopefully next year you can be here to celebrate.

We'll never give up on you!

Sunday, June 20, 2010

Comic Relief

People are forever asking us how we do it, how we hold it all together, how we stay so laid back and optimistic in light of our......challenges. Here's how and why:

Yup - found him up on the kitchen table one particularly stormy day "practicing" for a tornado.

Working out is hard to do, but she always does it with a smile/grimace on her face

Ready for take off, Daddy

True love

So, so tired.......

Such a great "daddy". (Yes, he's back in the patch :( )

Thursday, June 17, 2010

Our Shortest Hospital Stay Ever

At 9:00 this morning we checked in to the hospital for what was supposed to be a 48-72 hour video EEG in hopes of finally naming the the type of seizures M has been having. Her seizures have become more frequent and more severe in the past several weeks despite new medications and increased doses. She got "wired" by 10:30 and at 12:15 they came in to disconnect her as they had "plenty of information." When there are enough events to provide "plenty of information" in less than 2 hours, it certainly can't be good news. We were discharged and sent back to the clinic where the dreaded Sabril starter packet was waiting on the table in the exam room.

What our hope was, was that M has been having myoclonic jerks. What she is indeed having are literally hundreds of Infantile Spasms per day. Basically, there are two options - don't treat and wait for them to resolve knowing that with each one, she is suffering additional damage to her already severely compromised brain function; or treat them with Sabril which carries great risks of its own. We opted to treat them. Approximately 1 out of 8 of the children our Neurologist has treated has not responded. Hopefully M is one of the lucky 7.

There is A LOT involved with starting this medication, a lot of waivers to sign, monitoring to be done. IF it works, we can expect to see results in as little as a week. Dr. D says that when it works really well, these kiddos just suddenly "wake up" and "come alive." We're praying for that outcome.

The very unfortunate side of this is what lies ahead. Because of the extent of M's brain injury combined with complications of prematurity and underlying seizures, she is at extremely high risk of developing Lennox-Gastaut Syndrome down the road. We can't think about that just yet, but it's hard to ignore once the knowledge is there.

Wednesday, June 16, 2010

Just words

Today we had some very important (and long awaited) appointments. Here are phrases a parent hopes to never hear from her child's doctors:

spastic cerebral palsy
....we'll have to wait and see
grossly deformed brain
....we'll have to wait and see
significant brain damage
....we'll have to wait and see
extensive encephalomalacia
....we'll have to wait and see
significant visual impairment
....we'll have to wait and see
will never walk
....we'll have to wait and see
may never talk
....we'll have to wait and see
severe global delays
...we'll have to wait and see
low cognitive ability
and yup...you guessed it....we'll have to wait and see

...and that's not even all of them.

At some point, one just shuts down and realizes they are only words. Our neurologist asked me if I was "one of those parents" who wanted her to paint a fluffy, optimistic picture. I told her I was the polar opposite of fluffy - I wanted it straight and scientific. That's what she gave me, and I appreciate that. What I know is that the only solid truths we have right now are that:

1. her hydrocephalus is currently stable
2. there is permanent damage - we already knew that
3. we'll have to wait and see - we already knew that, too

To quote one of my favorite geniuses:

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" — Dr. Seuss

So, we move on to the next phase of this journey - fighting like hell. There is nothing we will not do for our kids. We will go to whatever lengths necessary to ensure M has every resource available to her.


Monday, June 14, 2010

The Numbers are in.....

....and they are frightening! My total cholesterol is 235, triglycerides 129, HDL 38, and LDL 171. I'm a walking time bomb just waiting for a heart attack or stroke! What's going to make me happier than anything is watching these numbers go down.

Saturday, June 12, 2010

A New Ticker

It's called accountability (or public humiliation depending on who you talk to). In any case it's probably the only thing that's going to help remind my fat butt to stick with the program. There's a new ticker at the bottom of the page. Yup, just like a few million other Americans, I am F.A.T!! It is time to grow up, face facts and get myself healthy again - for myself, my husband and my kids. All the excuses have kind of fallen flat - I can't blame fertility treatments (2006) anymore or my "recent" (2008) hysterectomy. I've not carried and given birth to any children so there goes that excuse. I just plain love to eat and just plain have to get over myself. I've been at it for about a month (on again, off again - as is typical for beginning anything) and have managed to already shed a few. It's amazing how good you feel when you start getting rid of the sugar and processed crap we stuff ourselves with. I've got a looooong way to go so help push me blog buddies!

Thursday, June 3, 2010

IT happened....

...and I really wasn't prepared for it. M and I stopped at the pharmacy yesterday to pick up a couple of her prescriptions. As is usual, they goofed in getting them ready and we had to wait (for like THIRTY MINUTES) so they could fix them. We took a seat in the tiny, little corner of four chairs. Moments after we sat down, a little old man came to the pharmacy with who I presume was his son. They glanced in our direction, the son smiled. The little old man did not. They requested their prescriptions, which they hadn't called in ahead of time, and were told to wait for a bit. The son promptly walked over to have a seat by M & I only to be grabbed by his father (who shot a look my way) and pulled him away. The son whispered something to his father who again glanced our way, whispered something back to his son and that was that. So, they stood - about five feet away from us in the middle of the pharmacy for 20 minutes. Now, perhaps I am being oversensitive. Perhaps it had nothing to do with my beautiful, African American baby. Perhaps the little old man had a terrible case of hemorrhoids and didn't want to sit down. Perhaps he kept looking our way because he was bowled over by how stunning we were. Somehow, I doubt any of those explanations are true. However, being that I couldn't be sure what the problem was, I couldn't say anything. Come to think of it, I'm not really sure what I would've said. Call me naive, but I just don't expect to encounter that type of behavior this day and age.