Today was good. The days are winding down and we are mainly working on things that Daniel has some trouble with (like taking big drinks). His volume was down a little today at clinic to 19.5 and our meal at the hotel tonight was 8.9 so we had a grand total of 28.4. The volume is down from clinic because they are concentrating on getting him to do things instead of the volume. We know he can do the volume when we have time between the meals on the weekend and we know he can't do it in clinic because the meals are too close together so we agreed to just work on things that he having trouble with.
Also, we are still struggling with the decision to introduce the soy milk to him next week. It is my decision in the end and right now I am on the fence. He is doing well with what we are giving him and with only 2 weeks left after this we are afraid if we introduce it and he has a set back there won't be time to "fix" things. I can introduce it at home slowly. I can either "fade" it it by adding small amounts to his juice/formula and over time gradually add more or I can give it to him every other meal. They will introduce it next week if I want but it's my decision and I'm torn. I would really like him to be on this because it is so much less expensive than the juice/formula that has to be prescribed but I don't want to mess things up that are going so well. I'll ponder it a little longer and will let you know what I decide.
Finally, thank you to my sister, Sheryl and brother, Kenny for the card you sent. Thanks for thinking of me and Daniel. We love you!
-Angela-
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we love u 2 sis and are just wishing the best foe the both of u. i hope everything goes well and u and danny just keep up the good work. love to all near and far we miss u
ReplyDeletekenny and katy
ANGELA WELL IT SOUNDS LIKE ALL IS STILL GOING WELL AND THAT IS GREAT.I WISH I COULD GIVE YOU SOME ADVICE ON THE SOY MILK BUT I'D BE JUST AS TORN AS YOU.I AM SO PROUD OF DANIEL THOUGH HE IS SUCH A TROOPER AND EVEN BEING SICK HE STILL DID A GREAT JOB THERE. NOT TO MENTION HIS MOM SHE'S A TROOPER TO. YOU NEED TO PAT YOUR SELF ON THE BACK FOR ALL YOU DO FOR DANIEL(AND ABI).WE ALL LOVE AND MISS YOU ALL BUNCHES, WE WISH YOU WELL AND HOPE TO SEE YOU SOON.
ReplyDeleteLOVE YOUR SIS, SHERYL
PS. CHELS AND HUNTER SAY HELLO AND THEY MISS YOU BUNCHES TO....