Hello,
Hope everyone had a good day. I got to go to the store today, Woo Hoo! It was a quick trip and mommy washed the whole cart down before I got in (actually daddy washed half and mommy washed the other half), aww mom. I still had to wear my mask and probably won't go again for awhile but it was nice to get out with the family. I am so thankful for the prayers lifted up for me everyday, I get a little stronger as the days pass. I still am not eating 
very much, I will have to tell Mr. Jerry (my Nutritionist) that I didn't eat the loaded potato bowl (with butter,cream and cheese) that daddy made me (daddy ate it :). I am sure that I will get there but they want me to eat 400 -800 calories a day, Yikes ! Also, I still don't do to well with my oral medicine so my nose tube doesn't seem like it will be leaving any time soon. Other wise I am doing pretty good. Enjoying being out of the hospital and able to play. I go have my 5th (post BMT) ERT tomorrow, I hope that goes well. I will also have blood work done and if it's good I might get a few days off again (yeah)! I also am thankful for all the cards and notes I am receiving. I got a card from Torie's Grandpa Tom that played a song for me.... I lov
ed it! I don't get to see Torie to much (seem to be on different schedules), but yesterday my sisters saw her and were so happy that she is still here at the RMcD house. Torie still has hurdles to overcome and her Grandmas are finding it hard to get extra sleep even though she is here but we are all glad that she is on her way to getting better. Thank you all so much for your continued prayers. Even though we pray the days to follow are uneventful we are still daily getting over hurdles that we need much strength for and much prayer. God bless you and hope everyone has a good night.
very much, I will have to tell Mr. Jerry (my Nutritionist) that I didn't eat the loaded potato bowl (with butter,cream and cheese) that daddy made me (daddy ate it :). I am sure that I will get there but they want me to eat 400 -800 calories a day, Yikes ! Also, I still don't do to well with my oral medicine so my nose tube doesn't seem like it will be leaving any time soon. Other wise I am doing pretty good. Enjoying being out of the hospital and able to play. I go have my 5th (post BMT) ERT tomorrow, I hope that goes well. I will also have blood work done and if it's good I might get a few days off again (yeah)! I also am thankful for all the cards and notes I am receiving. I got a card from Torie's Grandpa Tom that played a song for me.... I lov
ed it! I don't get to see Torie to much (seem to be on different schedules), but yesterday my sisters saw her and were so happy that she is still here at the RMcD house. Torie still has hurdles to overcome and her Grandmas are finding it hard to get extra sleep even though she is here but we are all glad that she is on her way to getting better. Thank you all so much for your continued prayers. Even though we pray the days to follow are uneventful we are still daily getting over hurdles that we need much strength for and much prayer. God bless you and hope everyone has a good night.Hugs,
Josiah
Josiah
P.s. In that bottom photo daddy is fixing my TPN ( nightly food that goes straight in my Port), that is what I need to get off of because it is hard on my liver. I need to eat more first... we'll see.
Hi Dear Si! I'm glad you got to get out today and I hope I see you at Clinic tomorrow for ERT..Only 3 more! I hope you can start eating more, but with those good cooks fixing your TPN, I can see why you want to stay with it! But milk is better so maybe we can meet up for a glass! SSSSi! XOXOXO Torie
ReplyDeleteHi,
ReplyDeleteI wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.
Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.
On the web site we have some resources on weaning kids from g-tube feedings -- that aren't a perfect match for your situation, but might have some ideas to help Josiah eat more. Click here and scroll to the bottom of the page for links:http://www.oley.org/tubetalks.html
Hopefully you won't need this information on a new treatment for kids on TPN who develop liver disease: http://www.oley.org/Omegaven_Liver_treatment.html
Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.
Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY