loving home

We are loving being home! Time goes so much faster at home though! I guess they say time flies when you're having fun. We have been having fun just chilling out at home. The weekend was a little rough as far as pain goes but she seemed a bit better today. Yesterday we drove down to ft worth for clinic and I took all 4 kids. her appt was at 130 and we saw the doc around 3. They said some of her blood chemistries were a little high and they didnt want to do the TPN that night and give her saline in clinic. we got out of there around 5 after a saline bolus of 250, we finally made it back home at 1045. I had just had 6 days of TPN delivered but they said based on her chemistries, that the formula needed changed. So they delivered 3 days to me today and we will recheck her blood here in tulsa on thursday and order 3 more days and retest monday.
Gracie started her 2 weeks of accutane last night and then we will have 2 weeks off before starting the last 2 weeks. they want me to drive back down for labs before the next round of accutane but i really dont want to. I will try to see if they will let me do it here. it feels great to know we are done with treatments. it will be super great to be done with accutane and scans too. :) just in time to enjoy our summer! we feel very blessed.

Wow

WOW!!! Gracie is done with scheduled hospital visits! So surreal. this round went so well, she saved the best for last. each day was better than the one before and by the last day, she didn't puke OR need extra pain medicine (besides the continuous) We got out of the hospital this morning by 10, earliest time yet. We were on the road and pulled into the driveway just after 3. it is so good to be home. I did a lot of crying late last night after the enormity of it all finally hit me. it is hard to even process the idea that she is done with treatments (besides accutane) we feel so incredibly blessed! What a roller coaster of the last 14 months. I know it's not all suddenly wonderful but it sure is great to have come so far. she really is doing the best she has in a very long time. we are continuing wi TPN at nights for a while. I think part of the reason this round went so well, was those extra pounds she had gained. Hopefully she can gain another 5 plus. :) we thank you so much for your support and love and prayers and ask u to please continue your prayers that she will continue to improve and gain her appetite back, so she can be stronger and get off the g button feeds and TPN.

Round 5!

Ok, I'm sorry for slacking on the blog the last 3 weeks!! I meant to update it on several occasions but I am a huge procrastinator!! let me start off by saying we had a GreAt 3 weeks off! Gracie was happy and active much of the time. she had TPN through the central line every night by yours truly. Chloe was my little assistant with getting me all the tubes etc. she says she wants to be a doctor. sometimes Gracie says she wants to be a nurse but usually she says she just wants to be a mom and cook fer her children. She's so cute. one day I asked her if she was going to have boys or girls. She said " how do I know!?" lol I said sometimes we can adopt children and say if we want a boy or a girl. She seemed ok with that. It's just a start to future conversations...it's enough for now..
we were so blessed to have Easter at home again. Gracie has been able to be home for every holiday since diagnosis, which is pretty huge considering all the setbacks she had. There are so many kids that spend the holidays in the hospital and we definitely recognize this. we had a great Easter. I will post pics when I get back home.
we got to Ft worth last night and started round 5 this morning which is the ch14.18 and GMCSF shots. The nurse called in another nurse to hold Gracie still for the shot. How quickly they forget she is a rockstar!!! I said it wasn't necessary and she would hold still, and of course she did. :) the Day went pretty well. She started having pain around 1 o'clock as usual and got the nurse boluses of fentenyl about every 2 hours after that for a total of 4 times. She also puked once but other than that she was fairly happy and had a good day. the ch14.18 ran at 10 ml/hr for 10 hours, so now she can hopefully have a restful night. We have 3 more days and go home Friday!!! this is the last hospital course!!!!! We can hardly believe it!!! After this she has 2 weeks of accutane at home and then 2 more weeks off and 2 last weeks of accutane at home. we will then come back for all the follow up scans etc at the end of June. we will leave her central line in until the scans and continue with TPN till then. she gained 4 lbs on the TPN these last 3 weeks and her little legs are starting to look like legs again. :) she is gaining strength as well. Thank you so much for your prayers. Please pray for her appetite to return so that she will be able to start Kindergaten in the fall!!!! Xoxoxo