I want to start with an apology for the lack of updates, it's been a very crazy few weeks. Ryan's birthday was amazing. I was worried being in the hospital that he wouldn't get to enjoy the day as he should but the nurses had everything worked out. He got to smash some cake, open gifts, and even got serenaded by almost all of his favorite nurses. I'll have to make a photo album of everything that's happened so far on our journey and post it with my next update. Right around Ryan's birthday he started having signs of graph vs host disease (GVHD) which is good and bad. The school of thought is that if you have a little GVHD you are less likely to relapse which is amazing. The issue we had was that the little rash ended up spreading to 90% of his body and began to cause lower GI issues. Luckily we have amazing doctors whom I trust wholly who got Ryan back on track. He is on a few different medicines that help combat the rash which have helped it clear up entirely. He is on a dose of steroids which we are beginning to wean him off of. We were discharged July 1st and sent out to spread our wings and we have soared. Ryan's counts have been stellar and we have only needed to get one transfusion of platelets thus far. Daily there is a lot of administering medications and we even give him IV fluids overnight that surprises me that Ryan does so well with, he just opens his mouth and takes them now. Normally when you leave the hospital you have clinic visits three times a week but because he is doing so well we only need to come in Mondays and Thursdays. Luckily we had some time the last few days as a family to spend together which has been so amazing. Ryan's started walking, Dan started a job, I should find out this week about a great career opportunity, things seem to be on the upswing... finally. I don't want to jinx us but it feels nice to be able to think about having your feet on the ground. Today we tested the waters and went to the aquarium and he kept his mask on the whole time! He had a blast watching the other kids and was even pointing out different fish / animals. It feels like we took a baby into the hospital and got back a little man. I just want to thank everyone again for all of the support you given. We are amazed at the amount of people who read this blog especially the vast span of the globe that you are reading this from. Below I have posted the links for Ryan's birthday wishlist and our page on GiveForward. I am also in the process of setting up a fundraiser in Maine if anyone is interested in donating a gift card / product to be raffled off or if you have some free time to do some organizing for me would be AMAZING. We are also going to do another run of t shirts which I will attempt to set up tomorrow. It's time for me to try and get some sleep but thank you again from the bottom of my heart!
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