Hailey was born 8/5/02 completely happy and healthy, no problems. She was developmentally perfect in every way; sitting up at 5 months, crawling at 8 months, and beginning to walk at 10 months. She started getting fevers and ear infections at about 10 months. The pediatrician didn't think anything of it although we were there often. Hailey was finally diagnosed with HLH when she was 11 months old by a different pediatrician and was sent immediatly to The University of Chicago Children's Hospital. There, they drew blood from me and Hailey's dad to see if the HLH was viral or familial(genetic). They started Chemo within 1 day at the hospital while we waited for the results. They came back days later telling us that it was familial. We then wanted to get Hailey in a remission so we could move forward in going to Children's Memorial Hospital for the transplant. They don't do transplants at U of C. Within a week of being inpatient at the hospital she had her first bad seizure which caused her to stop breathing and loose a lot of what she had already learned including sitting up, standing, and holding her head up. We started physical therapy and occupational therapy in order to get her to relearn all of those things. We came home for only a week in September and that is when she took a turn for the worst. Hailey had to be rushed back to the hospital because she started to get a high fever and her breathing changed. At the hospital she had to be intubated because she had stopped breathing and she was put in a medicated coma in order to find out what was causing all of that to happen. The docs there did many tests and figured out that the HLH had moved to her brain and caused her to stop breathing. She was intubated for 2 months while she had to have drains put into her head for the extra fluid to come out. In November she was transferred to Children's Memorial PICU for transplant because U of C didn't think they could do much more for Hailey. There she had a Tracheotomy placed and they put her on a ventalator while they decided their plan of action to get Hailey ready for transplant. It was a difficult task because of all of Hailey's problems, they didn't want to use a chemo that would hurt her liver to much or cause seizures. They did a great job. They got her as healthy as possible before moving to transplant. She had her transplant on December 12, 2003. About a month later we found out she was 100% engrafted. She started getting better soon after. We left the hospital from the PICU in April '04.

Hailey is now a beautiful 3 year old and 2 years post transplant, doing well. She still has a Trach and is ventalated at night due to sleep apnea. She has a G-Tube for all of her feedings because she doesn't eat. She does not sit up, walk, or talk like a normal 3 year old because of all of the damage the disease caused to her brain. She has made a lot of progress with Physical and Occupation therapy. She now smiles, holds her head up, and sits up all by herself for a short period of time.

Update: May 26th, 2006

Wow. It has been a while. Sorry! It seems like I start every new journal with 'Wow.' these days. Truth is Life is very busy and with my computer on the fritz these past few months I just never seem to have the time. but here I am finally sitting down and ready to tell all of our friends about how our life has been the past month and a half.
Hailey is wonderful. I dont think I give her nearly enough credit as to just how wonderful she is. She has grown so much and is turning into more of a little girl now instead of the baby that I so badly want to hold on to. Her looks are changing as she is getting rid of her chubby baby cheeks (although I dont think they'll ever really be gone!) and she is really becoming the almost 4 year old that she is. She continues to amaze me each and every day with the things she does and the things no one really gives her credit for. She has been through more changes this past year or so then I think most kids could handle but she continues to take it all in and although she does have her bad days, we let her have them and we always know that tomorrow is a new day. I continue to look forward to tomorrow with her; the new things she does, her new faces, and her bright smiles that always make my heart happy.
With a little less then a month until we add a new addition to the family, I'm getting anxious. Baby is growing and moving more each day. I'm almost completely ready for this one and just can't wait for her arrival.
Thank you for checking in and I'll update soon.... I promise!
Love, Kim & Hailey