I hope everybody had a great Father's day weekend! I am so grateful to my own father for all the sacrifices he made for our family growing up. His kids are his life. He truly invested ALL of his free time into raising all 8 of us. I don't remember my Dad having any outside hobbies, interests,or friends because I think that more than anything he genuinely loved being with his family. He took every opportunity he could find to teach us and create memories with us. Thanks Dad!! I love you!! Furthermore, I am extremely blessed and grateful to have the very best husband and Father for my own children that there is in this world! All of my children adore their father and have great relationships with him. Matt is so busy that beyond work, like my Dad, the only free time he has is spent with the boys. Josh, Luke, and Matthew live for every moment spent with their Dad. Thanks for all you do for us Matt- we love you more than words could ever express!
Our family had a great weekend. We had a family campout in the backyard and enjoyed being together, making smores over the firepit, playing games and attempting to sleep in the backyard in the tent (we almost made it but Luke was too scared of the crickets so we came inside early to try to get some sleep). Matthew must have said "I so happy!" about 20 times (literally) that night. The rest of the weekend was just as fun- Matt had the weekend off!! That alone, was the best Father's day gift anybody could have given him :)
Matthew continues to recover. He regressed a little since our last post. For a little over a week cardiology has been watching his white cell counts which continue to drop (his ANC is .4 for those who care to know). He is on a medicine called Valcyte because his donor's heart tested positive for a CMV virus. Typically this virus is not very threatning, in fact many of us could be carriers with no symptoms at all. However, when you are immune compromised and then exposed it can turn into a big deal. They are thinking the Valcyte is causing his levels to drop to as low as they are but they really can't do anything about it for 6 months until his treatment for CMV is complete. Until then, we are getting creative with some of his meds and hoping that we don't have to adjust his Cellcept (one of his immune suppressant drugs). He may need to start some injections of some sort to try to stimulate bone marrow production again. We'll see-- it's an appointment by appointment process. Until then, we are being even more careful about spreading germs (if that is even possible). I feel like I'm going through laundry, face masks, Lysol, and paper towels like crazy.
We also met with a dietician who told us that although Matthew is eating a lot better, he is still only intaking 1/2 the calories he needs. So, in went another NG tube. I was really upset about having to put in another NG tube, but then he started rebelling against taking his meds by mouth and I figured it's good to have an alternative route in case he's not cooperative. He also started throwing up and for the past three days (as part of his bedtime routine I'm guessing) he likes to throw up his NG tube so we have to replace it nightly. I know recovery takes a long time, this weekend brought me back to reality! He's such a sweet, happy little guy. We sure do love all our kids lots!!