Day 3

Terrific Thursday!!

We are still at the hospital on Thursday night. Anderson had such a wonderful day. He was finally up and about! It was great great great to see him up off the bed. WE were able to get him up, hold him, give him a sponge bath, play on a mat on the floor with the new cars and airplane (thank you Scherer's!), read books, played with the piggy bank...and he went out to the "main" play area on the 5th floor. We hope to venture to the BIG play area on the 1st floor, we hear it is quite the toy room.

Anderson tolerated being up very well. He was in pain at 1st, but he was able to overcome it and enjoy himself. He does not really turn his head too much....he will turn his body or move his eyes to look around...but on occasion, he will turn his neck. Dr. Frim said this is all very very normal. Anderson is down to very limited pain medication as well. It has been almost 48 hours since his last dose of morphine (to put it into perspective, he was getting morphine every 2-3 hours for 1st 2 days...now none!). We are managing his pain with Children's Motrin!! Can you believe it? He is also on valium (sp?), which relaxes the muscles so his muscles do not go into spasm (in the back of his neck where they made the incision). He is quite the little ROCK STAR.

People keep asking how Charlie and I are doing....we are doing well. We are feeling much better....we both have a sinus infection. Anderson's nurse practioner (sp?) gave Char and I a RX on Tuesday night so we would not have to go the ER. The meds seem to be helping us...but, who cares....did we mention our son just had BRAIN surgery?? This sinus infection seems like a walk in the park.

Anyway, emotionally....Charlie and I feel so so so so great! For the past year, we have been in a "worry" mode. That is all we did...worry, wonder, worry, wonder what is wrong. We've been so anxious, searching for answers, and simply heartbroken. The unknown was so very very difficult. That heartbreak turned around for us the night we spoke to Dr. Frim and he told us how successful he felt the surgery was for Anderson. Then, yesterday, when Anderson did the piggy bank...our hearts were SO full of HOPE. That worry has turned into hope. We feel so very blessed that there was something we could do to help Anderson and we believe in our hearts this was it!

Our negative energy and sadness has turned into positive energy and hope. Christmas Eve I spent most of the day in tears, I can remember. Just not understanding what was wrong with our baby and what all of these pieces meant, having no answers was so frustrating!!!

Now, I can't wait to wake up tmr morning to see what things Anderson will be doing. Charlie and I have spent the past 6 months (well, really longer than that...but ALL of the past 6 months) looking at the all of the things that Anderson "could not do"....now, we are looking at all of the things he "can do"! What a different way to look at life....our hearts are no longer broken, they are full of hope and wonder of what he will do next to surprise us.

Overall, we notice things are just "different" with Anderson. The way he is communicating, his cognitive abilities, he is waving "hi" to all of the nurses when they come into our room (he was not waving b/4 we came here!), he reads books and points to pictures with more certainty, and his pincher grasp is much more precise. He seems more coordinated and has more precision right now. I am not sure if anyone else besides us would notice these small things, but they are there....trust me, we have analyzed this kid TOO much the past 9 months to not notice these "small" things that he is accomplishing....and we just know that these are only the beginning!

LASTLY, I have to share with you what happened to me today...this is one of the reasons why I am not posting until so late at night (the other reason is b/c we were playing so hard today!).....another angel was sent to me today. Here is the background....

I get People magazine every week (mindless and fun to read when you are a Mom and only get 2 minutes here and there to read). Anyway, back in November...there was an article written in People about a little girl who makes bracelets and sells them to raise money for her disease she has. The article caught my eye and I read it (as some of you know, I make bracelets, I thought how cute!). Well, then, you know November 28th, Anderson was diagnosed with Chiari. Fast forward to January, we find Dr. Frim as the "go to doctor". I google the heck out of Dr. Frim. I find an article called "Living in the Dark". While reading this article, it says how Dr. Frim needs $10 million to do the research he wants to do on Chiari. And, at the end of this article is a note about Baylie, a little girl making bracelets to raise $$ for Dr. Frim for Chiari. OMGOODNESS that is the girl I remember reading about in People....it was CHIARI she was raising $$ for...I read about her 3 weeks b/4 A's diagnosis. WEIRD.

Okay...fast forward to today....Char, Anderson and I are playing in the play area on the 5th floor. This kind angel (Mom) comes to us and says...did your son have decompression surgery? Yes, he did. She said, my daughter was 13 months for her 1st surgery. Wow...A's 19 months. So, we are comparing notes. As she begins to talk, I realize I have " heard this story"...I am running thru my head of all of the emails I have received...then it occurred to me..."Are you Baylie's Mom? Baylie the bracelet maker?" The angel (Mom) says "Yes, that is my daughter!" I could not believe it......I wanted to meet her daughter and hug her and tell her how proud I was of her. I want to start doing Chiari fund raising (in my spare time), but I am 33....not 9!!!!!

As Tressie (Baylie's Mom) told us about Baylie, we could not get over the similar symptoms that Baylie and Anderson share. Baylie was actually so phyiscally delayed at 1 year, she could not even sit up! Verbally, Baylie did not speak like Anderson. Today, she is a "typical" 3rd grader with some physical limitations (no contact sports, no diving, nothing that can cause head trama...Anderson will have this the rest of his life as well). But...Baylie could not talk, walk, play, etc when she was Anderson's age...and to look at her today.....warmed our hearts.

Again, after talking to Tressie, meeting Baylie...Charlie and I were even more "renewed" with hope. I had tears of hope today. Here was a little girl with very similar limitations as Anderson and to see her 8 years later....WOW! No other way to say it.....HOPE!

Baylie has been on MSNBC, news stations, People magazine, spokes person for Comer's Children's Hospital, and went to Washington DC to speak to senators about funds and research for rare diseases, etc. Did I mention she is 9??? Baylie has raised $140,000 so far. YES! $140,000 so far! Her goal is $1 million! Go Baylie!!

Here is Dr. Frim's article " Living in the Dark"..... www.uchicagokidshospital.org/physicians/david-frim.html
** This is Dr. Frim's bio, on the right hand side there will be a place you can view the article.

Here is Baylie's web page.....
www.baylieforbrains.com
** you can go to her web site and purchase a bracelet, make a donation, or buy a tshirt to help raise awareness and funds for Chiari research.

Lastly, here is an article on Baylie on the Univ Chicago web page...describing how she started fundraising for Dr. Frim....at age 4!!!
www.uchospitals.edu/news/2005/20050715-chiari.html

Needless to say, Tressie and I spent a long, long time talking today, sharing stories, getting tips from an experienced "Chiari" mom with a child with VERY similar symptoms to Anderson, and exchanging info. We have found an amazing support person. She was an angel sent to us! Tressie wants me to help them do fund raising for Chiari!!!

To think...I have read about Baylie, Chiari affects Anderson in similar ways as Baylie, and we meet her.....WOW....an angel coming to us and giving us hope.

Thank you Tressie and Baylie!
Until tmr....GOOD NIGHT!