August 30, 2011

Hello Everyone! Let me start off by saying Grayson is doing fabulous!! I am able to praise God with such renewed vigor because of His awesome healing and that makes me thankful right now for my son's illness. Grayson is still being seen in the outpatient clinic regularly for blood work and a two hour infusion of an antibiotic that prevents a specific chest/lung infection. He looks beautiful and his hair is coming in thin but growing fast. He still has a port which makes clinic visits a little easier because they don't have to find a vein to poke. He has been seen once a week for over two months now and has been off his immune suppression medication since June 16. They were watching him closely for chronic GVH which tends to flare in the first two months. Praise God he didn't have any. His doctor said he has been doing so well off his medication that she doesn't need to see us for a whole month!! Can you believe that! We couldn't! It actually made us nervous to be away that long but we are one week into it and it feels good not to have to drive down there. We are still watching him closely for signs of chronic GVHD at home but for the most part we are just enjoying normallcy.

Chronic GVH can be really hard to treat and while Grayson is still at risk for developing chronic GVH he at least made it off his medication without a flare. This is something I am so thankful for today especially. I have other news about Grayson that I will post below with some pictures of his first vacation since transplant, but for now I have to ask something of all of you. When Grayson was inpatient and when we moved to transplant housing there was a boy that was 11 named Riley that was going through a second bone marrow transplant after his first was unsuccessful. Bone marrow transplant is very hard on a child's body so to have to go through two awful. Riley and Grayson went through all the same stages together and we were neighbors on the 8th floor and then again at the St. Casmir house. His mom and I kept in touch for a while once we both went home but these last few weeks I hadn't seen them in clinic and me being busy with my "normal life" didn't call or text her to see how Ri was doing. Anyway, she posted an update on Riley's page last night and he is back in the hospital with a very serious case of chronic GVHD in his gut. So serious that he has been moved to the PICU and has a breathing tube, feeding tube, and dialysis. This GVH is serious stuff and while I am so thankful to have a healthy baby my heart is just aching for this mom and her baby. He went home almost as healthy as Grayson did and now they are right back in the hospital and it's just heartbreaking. Can you please pray for this boy and his mother (Mary). She said he's still fighting and the kid always has a smile on his face but his body has been through so much and he needs strength and healing that comes from Jesus Christ. They are not believers in Jesus right now but my hope is that we can bombard their family with prayer and somehow they will come to know Jesus through their son's healing. Thank you in advance.

We took our first family vacation since Grayson was diagnosed and it was great. We were asked to stay local by our doctors so we went to Bethany Beach , DE. It rained for most of the week but it was just nice being away from the norm and the kids got to enjoy brief periods at the beach and pool which was better for Grayson anyway. He doesn't seem to be sweating which means his body doesn't cool itself when he's in the heat so we have to be really careful to keep him cool. His face gets super red and hot to the touch like he's overheated. The doctors aren't sure why he isn't sweating because they normally only see that with serious skin GVHD which he does not have. Last Thursday when I took him in she said she had heard the same complaint from two other recent bone marrow transplant patients so she said it might be a new side effect that they aren't yet aware of. We will see what happens with that but for now we just do our best to keep him hydrated and cool.

Grayson has started gaining weight and he is getting so tall. He has gained two pounds in two months and several inches. He doesn't look like a baby anymore he is a big boy. We took him back to the inpatient side of the 8th floor and none of his old nurses recognized him. They said they couldn't believe how different he looked and how much he looked like Gavin. They all called him a "little man". My kids must just have a mature look because I used to hear that all the time with Gavin too. Here are some pictures from vacation.

Oh and Grayson is talking in full sentences at 19 months old. I can't believe how much he talks. I told Tom he's bound to be a genius because he's done nothing but hang out with doctors for the last 9 months ;)   He really is a little smarty pants. He likes to climb on my stomach in the mornings and lean down real close to my face and whisper "Wake-up mommy!" If I don't open my eyes he pats my face and whispers it again. He cracks me up! He sings ring-around-the-rosey and baby beluga and twinkle, twinkle, he is just really grown up for only being 19 months old. I have some videos of him sword fighting his brothers that I will try to upload later today but for now I just wanted to update all of you on his progress and thank you again for all the prayer and encouragement that is still coming our way. Love you all!