National Jewish Health...

I got word last Thursday that the contract for Alorah's trip to Denver was just about done.  I didn't hear anything on Friday and I decided to NOT pick that battle, not harass people, and let it go knowing I would hear something on Monday.  Monday I took a shower and for about an hour after I could NOT find my cell phone.  It was on silent, I am just that cool-not only can I lose my phone I can lose it and have it silent.  I finally found it and of course I missed the call from our National Jewish Health coordinator.  I called right back but it was lunch time.  I called again around 3 and got the dates.  WOOT!  She goes in June, I will not miss any birthdays (Faith is June 12th and Vance's is 18 days later, I was a wreck thinking about missing a bday.  I would have done it but I also would have cried.  A lot.  I still have to figure out Skype, we will be there no less than one week and her contract is set up so that they do not have to get any further approval for anything that falls under diagnostic testing (apparently NJH requires some of the most specific contracts with insurance companies, most take a general contract, NJH has tighter reigns).  What testing?  I have no idea.  I do know her pulmo mentioned a sleep study and something about a lung testing (biopsy or something, I don't know exactly).  She is seeing an allergist and a pulmonologist.  We will be driving.  My mom offered to pay for flights and a rental car but I have a huge concern that she would get a respiratory infection on the plane and be sick for NJH (irrational, idk, not really willing to take the chance when the drive is 8 hours.)  We get reimbursed for mileage but not gas, which I am grateful for any reimbursement.  I was really kind of hoping we would stay at Ronald McDonald House, it seemed awesome, inexpensive, and Alorah would have activities in the evening.  The problem is that RMH does not do reservations so we would have to call the day we drive up and we may or not get a room.  Insurance covers our hotel near NJH so we are going that route instead.  My anxiety is crazy enough without having to guess whether or not we'd have a room lined up for sure.  We will be free of hospital activity during the weekend so we have plans!  We will be seeing one of my favorite families-The Crider Clan-I babysat for them when their girls were itty bitty babies and those babies are now 16 and almost 18.  I feel OLD.  I want to take Alorah to the Denver Zoo and we will see my friend Rachel (who will be in the area for a wedding!) and my friend April (who lives in Denver).  Rachel also suggested we take in the Colorado Springs zoo so I think I am going to try to make that happen.  I want to make several stops on the way to Denver and really enjoy the drive up there.  Alorah will have her books (she has been reading up a storm lately), DSi, DVD player, and many other things to keep her occupied.  The last time we made the drive to Denver Alorah was 6 mths and Faith was 2, I took them up to see the Criders for a week.  I spent a good chunk of time Tuesday on the phone with our insurance caseworker hammering out details.  I have to spend an hour on the phone with him on Tuesday so that he can have a better picture of Alorah's history.  There is a good chance Alorah will have to go back up to NJH for follow-ups but the ultimate goal is to make sure that her team up there and her team down here are all on the same page.
Alorah is excited, I can't say I am excited....I will miss classes, I will miss Faith and Vance, I know this  is the best place for her but I worry I have too much expectation of them to figure out exactly what is wrong.  I worry that it will run over the one week and the ramifications that could have on everyone, it's just stressful.  I am hopeful that this will be a road that leads Alorah to being able to lead a more "normal" care-free life.  It could always be worse but I hate this disease and I hate its presence in our lives.  I want Alorah to be able to run in the grass that she is allergic to, play under the trees that she is allergic to, go to homes with cats that she is allergic to.  I want her to run and play without having to stop and gasp for air-simple things most of us take for granted.
Vance is going to be with my mother-in-law (thank-you!!!)
Faith will be with my mom (she doesn't read this but thank-you, too!!)
Toby-girl will be with my Dad and Diane (again, idk if they even know about the blog but thank-you!)
I am trying to find a house sitter.  I am not okay with leaving the house empty...but if I DO have to our neighbors are fantastic and they would more than keep an eye on it, I like having nosey neighbors.
There is a lot to do between now and when we go, she sees her pulmo soon for a follow-up and I know he will be glad to hear we have her appt. and that we made it through a full month without steroids (for the first time since November).  I think the Qvar is helping, the particles are smaller so the medication reaches further down into her lower airway which is where a lot of her problems are.

I am trying to figure out how to ensure healthy eating, no way are we eating out 3 meals/day.  Right now I am thinking about bringing my big arse camping cooler and making a grocery run so that we can eat breakfast and pack lunches and only eat out for dinner.  I'm not sure, and won't be until June, if we will have a mini-fridge or anything in our room.  If anyone knows of an organic (esp. vegetarian) restaurant in Denver please let me know!  I am really, really picky about where we eat.  No fast food, no chain restaurants...the only place I take the kids here is Jason's Deli and that is a BIG treat, and the only place I get take-out from is Dion's.  (I happen to love Thai food, some Indian food, and there are a few places I go here but Flying Star w/ 3 kids is not in budget!)  We are reimbursed for $8/meal each 3/meals/day.  I would just really rather not eat out.  So, if anyone has suggestions about how to facilitate it, please let me know!

I am just so glad we live in the day of Skype.  I can still SEE all my babies even when I'm not with them.  :D  That makes it better.