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Sebi's story
www.lovebubbleboy.com
9-17
Yesterday was a good day, full of great news at the doctors. Xavier begged to go so I had some company...He
to do the big testing...They will compare his blood to someone not in the family and see how it stands up to
any kind of germ that can be in the environment. This is good because it will let us know if he can be out of
isolation soon! He has done so well in his recovery (he actually could not have done any better) that I think
(actually I feel like I know) he will be out soon. He did not hit any bumps in the road - ever- like I was
warned about and has done so well with eating and walking....yes he is walking now...sometimes making
himself fall and then he just laughs at himself. So, blood test results should be back in 3 weeks or so. His
donor studies show he is 39% donor cells (new cells) which may not seem that high but it is ok...even if he
stayed at that number he can be just fine (because all his blood work shows good functioning going on) but
they think that 39% will increase. He also got the go ahead for having vitamin D milk instead of the high
calorie formula mix! That is nice (saves some time on prep) and of course those of you who have babies
know how much formula cost so, good news there! Also, when the blood work comes back we will most
likely take out 2 meds that he is on so he will be down to only 3 a day (and those he will stay on for well.
He is still not too keen on sweet stuff (that is because of the transplant and what it does to ones taste buds)
but I have seen him show a little interest in candy corn. So far it is a diet rich in gogurt, meat and baby
cheetos - which the doctors have said give him whatever he will eat....I don't think I have ever had so And
last but not least by any means he has finally been given the ok to have a visit or two and go to very quiet
places in his stroller (like the library during the day). Visits are ok because he is in his "safe place" (home)
and it is a controlled environment (we can control who comes in and we know how clean everything is).
and it is a controlled environment (we can control who comes in and we know how clean everything is).
That is excellent news! I can finally start to see the end of alot of this. He will always have doctor visits to
check blood samples and other things that go along with having had a transplant but one day they will be
once a year! AND we are finally down to once a month! At this point if he were to get a fever he would go
in for a doctor visit and NOT a hospital stay! We plan on keeping this website up and updated for a long time
(this is especially good for those people that are following because they too are in similar situation). I
remember looking through all the sites of babies with scids and once the baby was really getting better the
entries stopped....in fact I only found one or two that kept going....and I really wanted to know how the kids
turned out and what life was like a few years later....so our hopes are to keep this going. I will update again
when I get the information on his tests...
Yesterday was a good day, full of great news at the doctors. Xavier begged to go so I had some company...He
to do the big testing...They will compare his blood to someone not in the family and see how it stands up to
any kind of germ that can be in the environment. This is good because it will let us know if he can be out of
isolation soon! He has done so well in his recovery (he actually could not have done any better) that I think
(actually I feel like I know) he will be out soon. He did not hit any bumps in the road - ever- like I was
warned about and has done so well with eating and walking....yes he is walking now...sometimes making
himself fall and then he just laughs at himself. So, blood test results should be back in 3 weeks or so. His
donor studies show he is 39% donor cells (new cells) which may not seem that high but it is ok...even if he
stayed at that number he can be just fine (because all his blood work shows good functioning going on) but
they think that 39% will increase. He also got the go ahead for having vitamin D milk instead of the high
calorie formula mix! That is nice (saves some time on prep) and of course those of you who have babies
know how much formula cost so, good news there! Also, when the blood work comes back we will most
likely take out 2 meds that he is on so he will be down to only 3 a day (and those he will stay on for well.
He is still not too keen on sweet stuff (that is because of the transplant and what it does to ones taste buds)
but I have seen him show a little interest in candy corn. So far it is a diet rich in gogurt, meat and baby
cheetos - which the doctors have said give him whatever he will eat....I don't think I have ever had so And
last but not least by any means he has finally been given the ok to have a visit or two and go to very quiet
places in his stroller (like the library during the day). Visits are ok because he is in his "safe place" (home)
and it is a controlled environment (we can control who comes in and we know how clean everything is).
and it is a controlled environment (we can control who comes in and we know how clean everything is).
That is excellent news! I can finally start to see the end of alot of this. He will always have doctor visits to
check blood samples and other things that go along with having had a transplant but one day they will be
once a year! AND we are finally down to once a month! At this point if he were to get a fever he would go
in for a doctor visit and NOT a hospital stay! We plan on keeping this website up and updated for a long time
(this is especially good for those people that are following because they too are in similar situation). I
remember looking through all the sites of babies with scids and once the baby was really getting better the
entries stopped....in fact I only found one or two that kept going....and I really wanted to know how the kids
turned out and what life was like a few years later....so our hopes are to keep this going. I will update again
when I get the information on his tests...
