Day+94 New Anxiety… Going home

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…

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2 Responses to Day+94 New Anxiety… Going home

  1. Lori and Burle Sargent says:

    Kristi, so well said. We are all so very proud of you and your family. Our hope for you and your family is to get back into some kind of normalcy……whatever that is! lol
    Remember, you are number one. Take care of yourself first so you can take care of others who need you.
    Miracles happen to angles and you certainly are one. You decserve every miracle that comes your way sweetie.

    Burle and Lori Sargent

  2. Grandma Terri says:

    Susan M. Buck
    God Bless you all!! I have been following this brave lil’ guy and his brave family and felt empathy for all of the ups and downs, this is definitely a great day for all!!!