The home health people came and showed me how to do the pump for the night feeds. we started out at 60 ml/hr (2 oz) and now we are at 80 ml/hr for 12 hours. so she gets a good amount of calories just sleeping. She is still pretty sore where the G button is. It takes 4-6 weeks to heal and it hasnt been quite 2. She is a good sport. It is nice that she can take her oral meds through the tube now too. That part makes her very happy. :) She is starting to slowly gain some weight back and is now up to 28.5 lbs as of today. She seems to be getting some strength and energy back as well. She was up walking around yesterday and even crawled up the stairs to play in the playroom. I was looking all over for her and then my other daughter said "she's up here!" i said "who brought her up there?" and she said that she crawled up on her own. It made me nervous that she was doing that but also very happy that she is feeling well enough to play again.
We have been hammered with thunderstorms this last week and we decided it was a perfect day for play dough. not that she plays outside but she has been wanting to take rides in the car to walmart or anywhere so we were stuck at home for a couple days.
Tonight Grandpa and Grandma took us out to Incredible Pizza. It was a lot of fun and it was great to see some some smiles from miss Gracie before we head back in for chemo in the morning. This will be round 4 of 5. surgery to resect the tumor will be in between 4 and 5 probably the week of June 7th. That will be done down in Ft. Worth.
The home health people came and showed me how to do the pump for the night feeds. we started out at 60 ml/hr (2 oz) and now we are at 80 ml/hr for 12 hours. so she gets a good amount of calories just sleeping. She is still pretty sore where the G button is. It takes 4-6 weeks to heal and it hasnt been quite 2. She is a good sport. It is nice that she can take her oral meds through the tube now too. That part makes her very happy. :) She is starting to slowly gain some weight back and is now up to 28.5 lbs as of today. She seems to be getting some strength and energy back as well. She was up walking around yesterday and even crawled up the stairs to play in the playroom. I was looking all over for her and then my other daughter said "she's up here!" i said "who brought her up there?" and she said that she crawled up on her own. It made me nervous that she was doing that but also very happy that she is feeling well enough to play again.
We have been hammered with thunderstorms this last week and we decided it was a perfect day for play dough. not that she plays outside but she has been wanting to take rides in the car to walmart or anywhere so we were stuck at home for a couple days.
Tonight Grandpa and Grandma took us out to Incredible Pizza. It was a lot of fun and it was great to see some some smiles from miss Gracie before we head back in for chemo in the morning. This will be round 4 of 5. surgery to resect the tumor will be in between 4 and 5 probably the week of June 7th. That will be done down in Ft. Worth.
Awesome she gets to be at home and is gaining weight!! Keep it up Gracie!
ReplyDeleteSo glad to hear that the G button is doing exactly what it suppose to be doing & to see so many smiles out of her. :) You are doing such a great job, Gracie!
ReplyDelete!!!!!!!!!!!!!
ReplyDeleteI'm so glad to hear!! She looks darling and so happy.
ReplyDeleteSWEET GRACIE...I love all the smiles and pictures!!!
ReplyDeleteI'm so happy to see Gracie is getting to PLAY =)
Love,
Steph
We still say "and please bless little Gracie B...." every night as we pray as a family. The kids love to hear a good update. Sending all our love and faith and anything else good that we can! Love, Mel
ReplyDeletehttp://mytricuspidatresia.blogspot.com/
ReplyDeleteI saw this post and thought of you guys! I love Paul Cardall, one of my all time faves. This week his post is called "Gracies Theme". Hope you enjoy it!