http://www.hemifoundation.org/
Exactly two months ago, Kristi and I were packing for the most dreaded trip of our lives. We were leaving for an unfamiliar city, in an unfamiliar state, to let doctors remove one-half of our precious little girl's brain.
We hadn't slept well in almost a year. We had been consumed by hospital stays, doctors visits, researching on the Internet, and trying to find anyone to talk to about Jessie's condition. Just days before we left, I sent one final email to the doctors at Cooks and Johns Hopkins to look at one more disease that I had found on the Internet. I knew that the symptoms didn't really fit, but I wanted to be the "knight in shining armor" that saved our daughter from such a terrible fate. I must have seemed so silly to the doctors. That's what dads do.
With all our options exhausted, we packed silently. If it wasn't for our faith in God, and for the wonderful community that we live in; If is wasn't for our family, and friends, and church, and school, and people that we didn't even know...if it wasn't for many of you reading this blog, we couldn't have boarded that plane on June 8th.
Imagine our surprise to wake up on the 8th to find a firetruck outside our house, ready to escort us to the airport! And to find our friends waiting outside our house and along the side of the road as we left town. It was like you all knew that we needed help getting to Baltimore, because we couldn't do it on our own.
At the time, only Kristi and I knew that Jessie's disease could only be confirmed by brain samples that would be removed during surgery. Only Kristi and I knew that Rasmussen's was a clinical diagnosis, and it could only be confirmed after the damage was done surgically., and it was too late to turn back.
Our burden was lifted by all of you at Jessie's Pink Day, and the Big Pink Send Off before school was out, and by Kristi's Birthday Surprise, and by the Cracker Barrel Carnival and by all of Jessie's Angels. We were carried through the hard times by well wishers and such caring people...most of whom we had never met.
Well, we made it to the airport and then to Johns Hopkins where Dr. Carson removed half of Jessie's brain. Dr. Vining told us a week later that the results from the lab were in, and Jessie did indeed have a very bad case of Rasmussen's Encephalitis. We had made the right decision.
So Jessie went on to Rehab at Kennedy Krieger Institute, and then to Cook Children's Hospital for more rehab, where you were all with us physically, on Skype, or in spirit. You all carried us through more tough times, while God carried ALL of us.
Now, I sit next to Jessie's bed as she sleeps. It is her last night in the hospital. She is going home tomorrow. She can walk, and talk, and laugh, and smile, and even tell jokes. She will walk out of Cooks Children's Hospital tomorrow with only half of a brain, but the same little girl that we left with 2 months ago. Praise God!
As I write this blog entry, there is another child in Baltimore who had a hemispherectomy today! His name is Chance, and he is in the Pediatric Intensive Care Unit right now. His surgery is complete, but his parents are sitting by his bead with fears that few will ever know. They made the decision to remove half of their child's brain in hopes that he will lead a more normal life.
The main difference between Chance and Jessie, is that Chance has a different kind of support. This morning, Chance's parents had a member of The Hemispherectomy Foundation waiting with them in the surgical waiting room. Jane, who is one of our Angels in Baltimore, sat with the family, and brought them food and was there to comfort them as they went through the most difficult day of their lives. She is there to serve them and help carry them, like all of you did for us.
Jessie has inspired so many people. She inspired a new foundation dedicated to children and their families who face Hemispherectomy Surgery. Only Jessie could take such a negative thing and inspire an organization that will help many kids and their families for an eternity, or at least until a cure can be found for these horrific diseases. She is the inspiration behind The Hemispherctomy Foundation. http://www.hemifoundation.org/ .
Many of you are now taking part in this foundation as well, and I look forward to watching Jessie grow and the foundation grow with her! I look forward to working with many of you in turning the organization into something that we can really be proud of.
I'll see many of you on August 16th at 6:00PM at Bearcat Park in Aledo. There are no thanks enough to express how Kristi and I feel. For those of you that I will never meet. Thank You too for your comments on this blog and for the cards and well wishes. They meant so much to our family.
I plan to keep writing the blog throughout Jessie's rehab, however, I don't think that it will compare to brain surgery....
God Bless You All, Jessie's Angels !!
Cris
Showing posts with label jessie home cook children's. Show all posts
Showing posts with label jessie home cook children's. Show all posts
Wednesday, August 6, 2008
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