Last week Zach stated "I want to go to school and be around kids". Who can blame him! So, today we went off to St Johnsbury school and registered him and he starts on Wed. Everyone there was so welcoming and he went right off with the guidance counselor for a tour of the school and to his new class. When I found him in his new room, he was sitting on the carpet with all the other kids having a spelling lesson....it was a moment for me. He is so excited to be "normal" as he calls it. His port came out last Thursday and he is able, for the first time in 7 month, to shower or bath without worry of his port or wearing a barrier, go to bed without having to flush his "tubies" and not have to worry about the dreaded dressing changes. He has hair, eyebrows and no port in his chest and now with school...he says "I'm so excited. I"m normal, I'm me again!"
That explains it all!
He is doing wonderfully. His lab work is great, he feels great. We have visits once per month now at the drs. So, now some sense of normalcy begins.
Thanks for everyones concern, support and prayers...I can never say it enough
More later
Steph
Monday, February 16, 2009
Thursday, February 5, 2009
February update
Hello everyone!
We have officially been home one month now and everything has been going very well. Zach has been to the dr's for check ups during this time and everything has been wonderful. His counts all came back up and he needed no further transfusions. He is scheduled to have his port removed from his chest next Thursday as well as an echo cardiogram and labs. Then he will be to the once a month check-up! Its so wonderful to see his pink cheeks and abundance of energy (although at times I am pooped!) But, he is doing wonderfully.
Zach is adjusting well and states he almost feels "normal". His hair is coming back like miracle grow was placed on it...its going to be about the same color from what I can tell. His eyebrows are back as well as his eyelashes. He says that as soon as his port is out...he will be back to normal! He is ready. We are going to hopefully get him started in cub scouts and we are going to get back to church. He really needs to make some friends and be a little boy again.
The Make A Wish Foundation has set our dates to go to the Nickelodeon Hotel in Florida for April 5- April 11. Zach is soooooooo excited!! We mark off the days every morning. He is so excited to see his best friend Sawyer, swim and play in the awesome pool area....and in general....live it up at the Nick hotel!!!!
Zach is back to a schedule of homeschooling. In November when he was so sick, we slacked of the schooling a bit, but now we are back on track....even though there is much grumbling from Zach! He wants to go to the outdoor ice rink all day long to practice his hockey...which is understandable, but school first. And...he skated once and did very well, but he refuses to try skating again. His idea of hockey is to go the ice with his boots on and slide around. Ask Sharon....falling on your backside hurts skates or boots.
Speaking of Sharon, she came for a visit, which was great. She taught me how to crochet and I'm working on a scarf for my mom (her mom too!). Ashley and Josh flew up from Florida for 5 days and we had a wonderful and very much needed "family time". It was so nice to have all of us together after everything that has gone on. We just relaxed and enjoyed being all together. We did, however, tackle some hills and did some sledding......as you can see in the pictures that follow..some peoples faces were in the snow more than others!
Well, that's it for now. We are enjoying the winter. We had a great snowy day when Ashley and Josh were here....I think here in St J we got around 13.5 inches that day. It's really beautiful when its a sunny day...with the blue sky and white snow...and the sunsets are just gorgeous.
Thanks for all the prayers and support everyone has given us. Please keep Zach in your prayers as we still have a road to go down. First is to get to the 2 year mark without a relapse...then to the 5 year mark to be considered "cured". God is good and believe that Zach will be fine.....its just very difficult to have that hanging over your head, speaking as a mother.
I'll write more later!
Steph (and Zach says "HI"....lalalalahaaahaha bobobobooooo) he is a goofball!
We have officially been home one month now and everything has been going very well. Zach has been to the dr's for check ups during this time and everything has been wonderful. His counts all came back up and he needed no further transfusions. He is scheduled to have his port removed from his chest next Thursday as well as an echo cardiogram and labs. Then he will be to the once a month check-up! Its so wonderful to see his pink cheeks and abundance of energy (although at times I am pooped!) But, he is doing wonderfully.
Zach is adjusting well and states he almost feels "normal". His hair is coming back like miracle grow was placed on it...its going to be about the same color from what I can tell. His eyebrows are back as well as his eyelashes. He says that as soon as his port is out...he will be back to normal! He is ready. We are going to hopefully get him started in cub scouts and we are going to get back to church. He really needs to make some friends and be a little boy again.
The Make A Wish Foundation has set our dates to go to the Nickelodeon Hotel in Florida for April 5- April 11. Zach is soooooooo excited!! We mark off the days every morning. He is so excited to see his best friend Sawyer, swim and play in the awesome pool area....and in general....live it up at the Nick hotel!!!!
Zach is back to a schedule of homeschooling. In November when he was so sick, we slacked of the schooling a bit, but now we are back on track....even though there is much grumbling from Zach! He wants to go to the outdoor ice rink all day long to practice his hockey...which is understandable, but school first. And...he skated once and did very well, but he refuses to try skating again. His idea of hockey is to go the ice with his boots on and slide around. Ask Sharon....falling on your backside hurts skates or boots.
Speaking of Sharon, she came for a visit, which was great. She taught me how to crochet and I'm working on a scarf for my mom (her mom too!). Ashley and Josh flew up from Florida for 5 days and we had a wonderful and very much needed "family time". It was so nice to have all of us together after everything that has gone on. We just relaxed and enjoyed being all together. We did, however, tackle some hills and did some sledding......as you can see in the pictures that follow..some peoples faces were in the snow more than others!
Well, that's it for now. We are enjoying the winter. We had a great snowy day when Ashley and Josh were here....I think here in St J we got around 13.5 inches that day. It's really beautiful when its a sunny day...with the blue sky and white snow...and the sunsets are just gorgeous.
Thanks for all the prayers and support everyone has given us. Please keep Zach in your prayers as we still have a road to go down. First is to get to the 2 year mark without a relapse...then to the 5 year mark to be considered "cured". God is good and believe that Zach will be fine.....its just very difficult to have that hanging over your head, speaking as a mother.
I'll write more later!
Steph (and Zach says "HI"....lalalalahaaahaha bobobobooooo) he is a goofball!
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