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Sebi's Story
www.lovebubbleboy.com
6-26 Day 30
Get ready for a long one. We left for the Apts. Sunday - it was a busy day. We have no internet connection
down as he is on sooooo much heavy formula. The night we got to the apt. he decided it would be cool to
pull his NG tube out when I turned my head. Nice. So I got to put a new one in all by myself. Got it done
nicely in 2 minutes with barely a cry. strange but nice. Anyone out there ever need an NG tube put in call
me....kidding....kind of. Feels strange and silent to be out of the hospital. Miss my nurses and felt odd not
quiet where I am I almost don't know what to do but then I do because I am around the clock caring for him!
Between meds, and diapers and food and moving him (trying to do PT) I am busy and yes, tired! All worth it
though. My nurses my nurses, you were the best and I feel so lucky to have had you all. Email anytime! I
mean it. Its a mad rush getting the house ready....Luke Paschal and his team have worked wonders and seem
to know everything! Remember I told you all you would be crazy not to use him! Well soon he will be done
here and I give my permission that you may contact him. I'm truly amazed at what he knows! Control Tech
done and such nice people. Dont call anyone else. Companies who do things like this are just incredible.
Lifestyle Group and Angies list are making the addition come to life.....it is ALLOT of work for them.....doing
this for us, strangers. Again, only good things I can say of those companies. And all who have donated time
and money to make things happen for us,.....we are just so thankful to all of you! Sebi's counts are coming
up nicely...they stopped a med as his platelets are too high but could be that his graft is just coming in that
well! We had our first clinic visit wed and all was well. we will go again friday. His look is changing...that
is a bit hard sometimes but i know when all is done his look will go back. His eyebrows are getting thick
and dark and his face puffy from the immune suppressant med. But really he is doing well...the doctors are
still pleased. I feel like there is so much more to say but I have little time as I am home today not for long.
Life is changing again and it is a bit scary and exciting.
Get ready for a long one. We left for the Apts. Sunday - it was a busy day. We have no internet connection
down as he is on sooooo much heavy formula. The night we got to the apt. he decided it would be cool to
pull his NG tube out when I turned my head. Nice. So I got to put a new one in all by myself. Got it done
nicely in 2 minutes with barely a cry. strange but nice. Anyone out there ever need an NG tube put in call
me....kidding....kind of. Feels strange and silent to be out of the hospital. Miss my nurses and felt odd not
quiet where I am I almost don't know what to do but then I do because I am around the clock caring for him!
Between meds, and diapers and food and moving him (trying to do PT) I am busy and yes, tired! All worth it
though. My nurses my nurses, you were the best and I feel so lucky to have had you all. Email anytime! I
mean it. Its a mad rush getting the house ready....Luke Paschal and his team have worked wonders and seem
to know everything! Remember I told you all you would be crazy not to use him! Well soon he will be done
here and I give my permission that you may contact him. I'm truly amazed at what he knows! Control Tech
done and such nice people. Dont call anyone else. Companies who do things like this are just incredible.
Lifestyle Group and Angies list are making the addition come to life.....it is ALLOT of work for them.....doing
this for us, strangers. Again, only good things I can say of those companies. And all who have donated time
and money to make things happen for us,.....we are just so thankful to all of you! Sebi's counts are coming
up nicely...they stopped a med as his platelets are too high but could be that his graft is just coming in that
well! We had our first clinic visit wed and all was well. we will go again friday. His look is changing...that
is a bit hard sometimes but i know when all is done his look will go back. His eyebrows are getting thick
and dark and his face puffy from the immune suppressant med. But really he is doing well...the doctors are
still pleased. I feel like there is so much more to say but I have little time as I am home today not for long.
Life is changing again and it is a bit scary and exciting.
| miss you all! I am sad i did not get to give you big goodbye hugs! Karin, you will just have to come back in for a visit:) I going so well!! It is just like sebi to pull his NG out just as you left! Priceless!! It won't be the same on the unit without you. I loved getting to know you and being able to care for Sebi. I will miss you and will continue to pray for complete healing for Sebi! Hugs to all! Love, Cortney M. |
