Lots to update today! I haven't been on in a few days, its just been such a crazy busy week. Peanut was doing great, we had her appt on Wednesday and got great news. The most recent blood culture was NEGATIVE!!!
BUUUUT, that high was short lived, as that afternoon she started spiking fevers. For almost 2 days her temp sat anywhere in the 39's-mid 40's. Today the fevers haven't been as high, but her temp is still elevated. She was really out of it when spiking and just generally feeling awful. So we took her to the ER last night, where they a CBC and also did a blood culture from her port. We don't have the culture results as those take 48 hours, but the CBC showed an elevated white count which only means that something is going on, not specifically what is going on. We had a follow up today at the hospital again, and as we already knew, there is nothing they can do until the blood cultures come back because they would have no idea how to treat her now until they know what is going on. So we wait. We are doing Tylenol/Advil round the clock as instructed and just hoping that Peanut perks up soon. Shes on very strong IV antibiotics (for another 6 days still, ugh) from the first infection in her port, so the reality is that its unlikely she has a new infection, but its possible the first infection is rearing its ugly head again. Then again, as we know with our luck, anything is possible in terms of what (if anything) in brewing in her port.
We also met with Peanuts dietician today, shes down weight from discharge (she was down weight on Wednesday and even more today).
They said its likely that her fevers are the cause, as you burn so many calories when fighting an infection and spiking fevers, but crap.
We got another Big Give on Wednesday morning, which the kids loved. It was from Shannon DIS: WyomingMomof6. She sent Peanut a beautiful Beauty and the Beast top and skirt set (again, Peanut loves the twirl factor, lol), and a Pirate Mickey shirt and shorts for Monkey. They were so exicted. Thank you so much, Shannon.
In the picture of Peanut alone, her hands are making a heart. She said since Belle and the Beast are in love, thats what a heart means. heehee!
And today, got our wish package from the Children's Wish Foundation, with everything we need for our trip. OMG, it feels ever more real right now. TWO weeks to go, which feels like no time. NOTHING has been done yet, and just thinking about what we have to do to get ready is crazy. Ack!! Peanut got Roary who is the CWF Mascot (a big stuffed lion), who she loves. We put a bow in Roary's mane to make her a girl, lol. Monkey got a bat beanie and other random toys, colouring stuff, etc. and a movie (Air Bud). We got our tickets, expense cheque, GKTW info and everything with regards to the car rental, supplies, stroller rental (they rented us a Bob Revolution stroller - SO excited), etc. We also got a camera, camera bag and memory card, coupons for free prints and a free photo book when we come home from Blacks (they are a photo company who are sponsors of the CWF). We all got our tees, buttons, special Wish stickers that we should be wearing to identify ourselves to the park workers (apparently the park workers know that they specific stickers means you are a wish family), luggage tags, a Walt Disney World Guide book, autograph books, a backpack which will be great for the parks, even a special folder for important paper work. Lots of great stuff, all of it a surprise as we had no idea we were getting anything other then the paper work/expense cheque, lol. The ONLY stress is the seating on the flights going to Orlando (coming home, all 4 of us are together). Apparently there weren't seats available so we could all sit together. Of course, not the end of the world we figured. We assumed it just meant that we were 2 and 2 - I would sit with one of the kids, hubby with the other. Nope. In fact, all 4 of us are in seperate seats, in seperate rows. Peanut is 3 rows ahead of me, Monkey 1 row behind me and hubby 5 rows behind him. Riiight, like i'm going to have my 3 & 4 year old ALONE.
So I called our Wish co-ordinator who said they were already aware and that there was nothing they could do.
She said when we do online check in the night before, something might open up so we can sit with the kids, and then to mention it when we check in. She said shes never heard of them not being able to accomodate a situation like this, especially when it comes to young children but still its a stress for me. She did say that if the airline said there was absolutely nothing they could do (essentially that the kids had to be alone), to call the emergency contact # for CWF and they will find alternative arrangements, so essentially not to get on the flight. But still, crazy. So hopefully it gets worked out smoothly at the airport, because I refuse to fly with my kids completely seperated from us.
So ya, its been a week. I'm beyond tired and I have the headache of the century tonight.
It would be great to try and meet up while we are there. 
You are so sweet. I've missed you! 
I hope we all remain healthy, lol. With my luck, i'll get sick just days before the trip. 
