Thankful
Hello everyone. We just wanted to write a blog to update what has been going on with James. Sorry for the wait
I think I will do bullets again because I think it is easier
* Today is day 165 can you believe it? Nov. 20 (my parents 40th wedding anniversary) will be 2 years since we found out James had CGD. This little man has almost died, lost a lung, had a bone marrow transplant, and has been cured and he is just over 3 years old. He has taught us so much about life, to appreciate every minute of everyday, and to never sweat the small stuff because guess what in the long run it doesn't even matter.
*His 100-day work up results we good. He had a procedure done to take bone marrow out of his hip to look at how it is producing. It looked really good. Hearing test showed that he lost a little more so we go back in three months to check it again. Fingers crossed it will stay the same. He is still 100% donor, which is fantastic!!
* James dressed up as a doggy for Halloween and we were allowed to go to 4 houses. James had a blast he was so excited to be outside it was amazing to see. He made mommy dress up as a kitty cat and daddy as a pirate. He ate so many Reese's Peanut Butter Cups. His new favorite!!
* Doctors visits were moved to every other week and we only see the doctor once a month and the other visit is just for labs. Twice a month can you believe that?!?! We were going three times a week and now just two times a month. That was a shocking surprise. Of course I was nervous about it but the docs said it is a good thing that they don't need to see him. Yay!
* Started an inhaler for a cough that he has we go to the lung doctor in December. He is doing so well with it. Oh and he is off blood pressure meds and steroids. Now we are tapering the last immune suppressant that will take 16 weeks.
*James' appetite is back and he is now staring to gain weight. He is definitely getting taller. Our little baby in now a little boy.
What we are thankful for this Thanksgiving
~ James progress through this transplant recovery
~The donor that cured our boy
~Our families that have been there for us through it all
~Our friends that have lent a shoulder or an ear to comfort us
~The doctors that have had the knowledge to get James through this
~That Dan and I have had each other
~ As always thankful for all of our health and happiness.
This holiday season is a very emotional one for us because we can't help but think about how transplant could have went and how thankful and lucky we are that it didn't. James is truly a miracle. He has brought so much joy to so many people's lives. He has brought back old friends of ours and we have made new ones because of him. Like everyone says we can't wait to see what the future holds for this kid because we know it is going to be something special. Have an amazing Thanksgiving and Holiday season with your families. Know how much we love you all for your continued support. Enjoy and celebrate every waking minute!
BELIEVE
Dan, Sam, and James
I think I will do bullets again because I think it is easier* Today is day 165 can you believe it? Nov. 20 (my parents 40th wedding anniversary) will be 2 years since we found out James had CGD. This little man has almost died, lost a lung, had a bone marrow transplant, and has been cured and he is just over 3 years old. He has taught us so much about life, to appreciate every minute of everyday, and to never sweat the small stuff because guess what in the long run it doesn't even matter.
*His 100-day work up results we good. He had a procedure done to take bone marrow out of his hip to look at how it is producing. It looked really good. Hearing test showed that he lost a little more so we go back in three months to check it again. Fingers crossed it will stay the same. He is still 100% donor, which is fantastic!!
* James dressed up as a doggy for Halloween and we were allowed to go to 4 houses. James had a blast he was so excited to be outside it was amazing to see. He made mommy dress up as a kitty cat and daddy as a pirate. He ate so many Reese's Peanut Butter Cups. His new favorite!!
* Doctors visits were moved to every other week and we only see the doctor once a month and the other visit is just for labs. Twice a month can you believe that?!?! We were going three times a week and now just two times a month. That was a shocking surprise. Of course I was nervous about it but the docs said it is a good thing that they don't need to see him. Yay!
* Started an inhaler for a cough that he has we go to the lung doctor in December. He is doing so well with it. Oh and he is off blood pressure meds and steroids. Now we are tapering the last immune suppressant that will take 16 weeks.
*James' appetite is back and he is now staring to gain weight. He is definitely getting taller. Our little baby in now a little boy.
What we are thankful for this Thanksgiving
~ James progress through this transplant recovery
~The donor that cured our boy
~Our families that have been there for us through it all
~Our friends that have lent a shoulder or an ear to comfort us
~The doctors that have had the knowledge to get James through this
~That Dan and I have had each other
~ As always thankful for all of our health and happiness.
This holiday season is a very emotional one for us because we can't help but think about how transplant could have went and how thankful and lucky we are that it didn't. James is truly a miracle. He has brought so much joy to so many people's lives. He has brought back old friends of ours and we have made new ones because of him. Like everyone says we can't wait to see what the future holds for this kid because we know it is going to be something special. Have an amazing Thanksgiving and Holiday season with your families. Know how much we love you all for your continued support. Enjoy and celebrate every waking minute!
BELIEVE
Dan, Sam, and James
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