I'm back with another update!!!
Thank you again everyone, for checking in and keeping our family, especially Peanut, in your thoughts. It means a lot.
Since my last update, Peanut has finally taken some steps in the right direction and we miiiiiiiiiiiiiiiight, get to go home this weekend. I don't want to get too excited just yet, as its been a long road. Fingers crossed though. She just had her catheter taken out this morning after a week (YAY), and was able to pee on her own very quickly afterwards. Sfter some med changes, things seems to be moving in a more positive direction. She has put on some weight
(though we've been warned that she will lose weight when she comes off the TPN), they've changed her formula and the new stuff she is on is completely predigested (more so then her previous formula) and thus far has been very gentle on her. Its a lower calorie formula, so they have some tweeking to do with regards to her feeding rates, but we'll get there. She is tolerating her meds well too, which is amazing. Her migraines have gone way down (shes only had one in 5 days, which is amazing) since her latest med change (we think it was a combination of some of the meds she was on and not finding the right mirgraine med - which we think we have finally found). Physically she is quite weak, today she has taken her first steps in 14 days. She is going to be starting physio today at the hospital as well. She has come a long way in the last 14 days, and we see so much of our old Peanut coming back to us.
While we still have an incredibly loooong road ahead of us, I think we finally have a bit more stability with Peanuts health (I don't want to jinx anything)...at least for the time being. Which I will take any day. Baby steps...
Annnnnnd, we got some more fabulous BIG GIVES this week. 4 in fact!!!
The Laxtons sent us an incredibly generous gift card, Peanut loved seeing Tinkerbell on the card and can't wait to spend it. She even graciously said she would share it with Monkey.
Thank you SO much for for your kindness and generosity.
Sheri - DIS name SheriDee32, sent some amazing outfits for the kids. Peanut got the most beautiful dress - the first thing Peanut said was "look how twirly it is".
I can't wait to try it on her for to get more pictures. Though I don't think the pictures will do it any justice. She also sent along the kids matching shirts for our breakfast with Mickey & Minnie. Peanut got a Minnie one and Monkey got a Goofy one. Monkey also got a Mickey shirt to match Peanuts dress and 2 pairs of shorts and a cute leggings for Peanut. Everything you sent was amazing, thank you SO much.
Jennifer - DIS southhawkk, sent the kids some pillow cases. Princesses for Peanut and Toy Story for Monkey. They loved them and asked right away if they could use them. They are great. Thank you, thank you.
And last but not least, i'm not who the last package is from. There was no name or letter/card?? I hope you come forward.
The wonderful Big Give member sent along 2 activity books, 2 sticker books and 2 crayon rolls. They are awesome, and will be a great addition to their plane activity stash. Thank you mucho!
For the Big Gives to bring a bit of sunshine to Peanuts day. Please keep us updated!!
I have good long term memory but if you asked me what eat for dinner last night I couldn't tell you. lol. 
That poor little angel has been through so much in the past few weeks. 
My heart goes out to your family. Good hear things are starting to turn around. Sending prayers and pixie dust in hopes Peanut will come home this weekend. 
SO, she has an infection in her port, which was the worst scenario from the 3 they had on the table. We found out yesterday that there was an infection present, and today the full reports came back indicating what kind of infection, and what we were dealing with. So in the hospital we remain. Until she has a negative culture, we can't take her home and continue IV meds there. She has a minimum of 10 days of IV meds, and that depends on if and when the cultures come back negative. They've said there is one more antibiotic they can try, as a last resort. The worst case though, is that her port will need to be removed. 
If that has to happen, she'll be transferred to another children's hospital 2 hours away, the port will be removed and she will stay there on IV antibiotics until the infection clears. Once cleared, they'll take her back in to surgery and put a new port in. So we are REALLY hoping that the infection clears up with the meds she is on. She is on IV antibiotics every 6 hours, and the dose of that med was increased today to try and kill off the infection. They also stopped her TPN on Friday afternoon, once they suspected the possibility of an infection. They said that the TPN could possible just feed the infection more, thus making her sicker, especially since there is so much sugar in TPN (more so hers, as they had to increase the glucose in hers since her blood sugar kept dropping too low). So ya, to say we are deflated is an understatement. We were supposed to be here a week, then one complication turned it in to two weeks, and another another complication. Ugh...its very frustrating. We just want her home, SOON. 
