Well we have officially been on the BMT floor for 22 days... Whew, exhausting just thinking about it! Its been rough and we are weary BUT we are so thankful for Ryans progress and so humbled by the support you have all shown us! We will likely be here through the end of the month (my hope is we go home by Oct. 1, but there really is no way to predict when things will happen- just waiting... Ryans counts dropped today and he will probably get a platelet transfusion tomorrow (Wednesday) and then will probably need a blood transfusion by Friday. Ryans body is not making these cells and the donors cells are not working yet, so donated blood and donated platelets are what will keep Ryan alive for the next 1-3 weeks. So if you have ever donated blood or platelets: THANK YOU!! If you havent done so in the past few months, please please do if you are able! Its so quick, yet so vital. Ryan is starting to get cabin fever- bless his heart!! He practically begged his sweet nurse to color with him today... And he very quickly let me know that he did not want mommy coloring with him- he wanted his nurse friend. Isolation from kids and friends is one of the hardest parts for him (and us). Luckily he hasnt had much friend interaction in his life to actually miss it, but it sure makes me sad to think about what he is missing sometimes. Once we go home he will still be on isolation... Until December 12, to be exact... And even then it will be very limited interactions until he is off certain immunosuppressant medicines (I think 6 months post transplant). But oh to be home!!! No IV pole, no port needle, our own beds and couch and kitchen and bath!!! So wonderful to think about. Several people have messaged lately about having trouble finding the target list- so I have posted the link below again. Its not under the baby registries- its actually called target lists, but this should take you to it. We are updating it as we learn of new things that we need/will be helpful now and once we go home. (Example- we will be washing all sheets daily so we need a few more sets...and we have I replace all our plastic cookware for cleanliness purposes...cleaning items...and a few things Ryan may like to help keep him entertained while on isolation.) Pictures: Ryans last push of chemo ever- from today!! The three of us snuggling last night. And the miracle of Ryan taking an hour nap alone in his crib today!! target/ot/list/tt2MXHW_GJNTgFn1_iwutA
Posted on: Wed, 17 Sep 2014 03:19:39 +0000
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