Wow, the past month has just flown by. These boys keep me so busy! I am very happy to report that Grayson is still doing wonderfully. His hair is really starting to come in and I am a little sad because his bright blond has been replaced with dark brown which makes him look more like Tom than me. I will remain content with the fact that he has my blue eyes! Grayson does have a very big day coming up this Friday, June 24th at 9:00am. He will have his fourth post transplant bone marrow aspirate which they will test to see if the Leukemia is still gone and what percentage of the cells in his marrow are Gavin's (Graft) and what percentage are Grayson's (Host). I still can't believe he is six months post transplant. It make me so full of joy to think about how far he's come in such a short time. We were given permission last week to start coming out of quarantine or isolation as I called it. Grayson was allowed to go outside without a mask and we were able to attend church for the first time as a family on Father's Day. What a great present for Tom!
Grayson's immune system is still not completely functioning, but he is off of his immune suppressant and far enough out from transplant that they feel comfortable letting him out of the house. I really don't know who is more pleased about this, the baby, Gavin, or me! I am just so thankful that since we have been released to come home, Grayson has not had one single fever or hospitalization. That is just a testament to God's grace and the power of prayer. Thank you again to all of our friends and family that continue to lift my son and our family in prayer. We of course are still very cautious in all of our outings and we are trying to introduce the outside world very slowly. Grayson went to the grocery store with Tom, Gavin and I for our first outing. There are actually more exciting places in Carroll County that we could have taken him for his first outing but we needed food and I was happy just to be out with my family. We have to keep Grayson in our stroller the whole time because he can't touch anything and the carts are far too germy. He was content with that for a while and then my very active baby had enough of being still in the stroller and started screaming to get out. I ignored him at first to see of he would stop but he only got louder so I picked him up out of the stroller to my husbands dismay. I thought I could just hold him through the rest of the store. Grayson had other ideas and tried his best to squirm to get down and run but after he realized I wasn't letting go, he resorted to pulling my hair, smacking my face and more screaming which of course caused a lot of staring. At that point I promptly left the store to console my out of control baby. I was really thankful that Tom was there because he was able to finish the grocery shopping :) We thought through the second outing a little better and opted for the local trail where he could run (yes he runs now) in the fresh air. Needless to say this trip ended on a much happier note.
My big boy has grown several centimeters in the last few month and thinned out quite a bit. These pictures were taken Father's Day weekend and I may be biased but I think he is simply charming.
Actually I think he is perfectly beautiful. This child, this precious child is running around, doing his best to keep up with his big brothers, smiling and laughing and I find myself in a mess of tears just thanking God for his mercy and healing. My prefect little boy produces such a deep gratitude and joy in my spirit and I simply can't get enough of him. I must kiss and squeeze him a thousand times a day and he lets me...for now. He is a very affectionate child and while he is still very clingy to me he has blessed a few others with his special hugs and kisses. When he hugs you he wraps both his tiny arms around your neck and presses his cheek against yours and squeezes as tight as he can and his kisses are the drool all over you kind of kisses that are only sweet when you are a baby.
Grayson still has weekly clinic visit at Hopkins. Here he is during one of his visits. He plays with the calculator during vitals so that he can push button like his nurse does on the machines. This is Grayson with his P.A. Nancy, checking out his lab results.
So far we have not seen any Graft vs. Host flare-ups. His skin is still looking good. The doctors say that if he doesn't have any symptoms of GVH by two years out he probably won't get it. I know that is still a long time away but there are others we know that are already experiencing it. He hasn't gained any weight but he is holding at 25 pounds so they are happy with that. He is still nursing all the time which the doctors are still encouraging. I am getting impatient with the nursing because I am not seeing an end to it any time soon. I feel at time that he is literally attached to me all the time. He doesn't eat very much table food because he just prefers that closeness with mommy. Besides the smacking, hair pulling and running he has learned some other "tricks" and lots of new vocabulary. One of his favorite new words is "nurse?" I wish I could say he was referring to a person instead of a meal but I can't. He is putting words together and making short sentences and his favorite activity besides nursing is reading. As soon as he wakes up he runs into Gavin's room and grabs a book off the shelf and brings it to me and asks "book please?" He is just so darn cute!
I posted a video of Gavin and Grayson playing with pop-its at Grandmom Brown's house. These are like little firecrackers that you throw at the ground or stomp on and they spark and make a popping sound. He gets such a kick out of himself when he pops one.
http://www.youtube.com/watch?v=CmyJwF-ceks
Thank you all again for your continued love and support for our family.
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