Saturday, June 16, 2012

Having Hope

I'm sorry that it has been awhile since my last post. Peyton is doing well! He has been battling some respiratory issues since late April but hanging in there strong:) May was a rough month for Peyton. He was sick which seemed like the entire month, he had his 3rd set of tubes put in his ears. He had 2 allergic reactions, we were in the ER with him 4 times. I think i could keep going but I'm sure you all get the picture!
On a better note, we had his clinic visit with Hem/Onc on May 25th and all of Peyton's numbers were normal and he again was 100% donor ( his cells). We could not be more thrilled with how well he has done with his transplant! He is off ALL bone marrow medications!!!! A huge sigh of relief!
On June 1st we traveled to Orlando for Peyton's Make A Wish. He had the BEST time, and his wish came true to feed the Dolphins:)
We arrived home on June 7th and barely 24 hours later we headed to the ER with Peyton. He was diagnosed with Bronchitis. Another respiratory problem. Ugh. I have discovered that a lot of these MLD kiddos have this problem. Thank GOD it has not turned into pneumonia yet. He has a big enough chance with aspirating. So it has been a long road over the past several weeks, but Peyton is still smiling and that's what gets us through each and everyday along with our hope.
Hope for Peyton to continue to make steps toward improving. Hope that he WILL get up and take steps. Hope that he WILL have the bright future that he deserves to have. Hope for a CURE to this disease. We Have Hope.
They say God never gives us more than we can handle......well I am not sure about that yet! But I do believe that there is a purpose for the paths we are chosen to walk. A purpose for the heartache and the tears. God has tested our family over the last year or so and out of it has come more LOVE than you could ever imagine. I have tried my best to take Peyton's disease and turn it into a positive. To help others as much as I can. To raise as much awareness as I possibly can. To bring hope to others. And in my "free" time, I think I am doing a good job at those things.
Our family is finally getting into a routine of our new life that seems to change daily and I think we are adapting well. It has taken time. Peyton is stronger than all of us combined and He is the rock that holds us all together!

With Hope and Love
Jess

2 comments:

  1. You are so strong and your doing a great job! May God continue to bless you and give the strength you and your husband need each day!

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