Liam's HLH Journey

 We are over the moon! Liam, mommy and daddy are headed home~hopefully this thursday night, and have appt in Portland on Friday!! It has been a journey in Seattle and his journey will continue here at home with his big brothers! They are so excited to see him and mom and dad. We are so thankful for how far God has brought him and can’t believe this day is coming!

 Carol and I got to be involved in a conference call with Liam’s doctor yesterday. Lots of very good information, and direction as the journey will now continue with Liam at home with his loving family! Very proud of Jared and Kristy! Job well done and how nice to hear Liam’s doctor rave about his parents and great job you two have done! Remeber that as you head home tomorrow, Liam is in good hands with you guys and we are all here to offer our support! Love you~

Have this set up for anyone wanting to help out the family with a meal!

http://www.takethemameal.com/meals.php?t=WCYD4571

Today brings a new anxiety. I knew we would have to go home but I think I blocked the emotions that go with it. It’s the unknown without are protective bubble the hospital is within walking distance. We will be at least 45 minutes from the nearest hospital and we will be with doctors that are not experts in GVHD. I will be taking care of my three other boys with the help of my parents. My life has been so many different directions the past 11 months that it will feel weird to go back to normal. I feel like it’s the first day of school were you are excited but nervous of the unknown. Now I wait to see if Liam will loose his graft or get GVHD. I really hope none of those things happen but it is a reality I have to try and except. It’s also hard to believe that he is HLH free for now. The medical field works miracles that I would have never imagined possible before this. God gives them the ability to work miracles I believe in my heart. They are amazing people who have dedicated there life’s to save others. I feel like how do you thank them for something like that? I will truly miss the friends I’ve made up here. They will always hold a very special place in my heart.
Liam is doing well except for the looser stools he has been having. His liver function is back to normal. His NK function test came back really low but they think it is due to the shipping and handling of it. So they will retest it on Tuesday. He is almost walking and climbing everything. He is my little prince Liam for sure. I am not sure how he is going to like sharing mommy with his brothers. I can only hope our life will get to go back to some since of normal. It will never be the same it was before all this. But I like to think it will be even better. It has changede in so many ways and I like to think all for the better. It has made me a much better person. I lost myself before this and I feel like now I am finding my passions and love for life again. You get so caught up in being a mom you forget about you.
I write this in hopes that it will help others going through it feel like the emotions they are having are those of many going through this. I hope it also gives strength to those that have a litlle one fighting HLH there is hope Liam defied the odds and so can your child. Love and hope to all…

Kristy’s Twitter Update: Monday – August 8, 2011

I started my ride today doubting myself. I thought I don’t even know if I can go 12 miles. I didn’t do 12 miles I did 20 miles!