a new week...a new hope

Gosh it's been awhile, I kept getting online to update and then something kept me from doing it. it's been kinda crazy here, with meetings, cf parents night out, appointments, bipap and iv's and plain ol living life. So now I have a second to let you all know things are going ok. not great, not horrible. thats all i can ask for these days i guess. Conner's been receiving lots of your mail and postcards and he LOVES it! thank you all so much for your generosity. I've gotten a map so I can start marking on it where you all live, everyone who loves and supports him. That will be great for him I believe. He always asks me if certain people who write to him are "in this world" so I think he'd really enjoy the map. As always your continued love, kindness and support are whats getting us thru this whole time.

Parents night out was a blast, lots of our cf parent buddies there for a nice dinner complete with wine (and I don't even like wine but this was yummy!)

Our GS walk is this coming saturday and our team is huge! We have I believe 6 teams nationwide this year and a few have already taken their steps for the cure! thank you for those who have, and to those who yet to as well. WE're knee deep in fundraising now our team is already over $4000 in donations and thats only online, not the checks and cash yet, so that I'm very glad for, and thats just our vancouver walk, not the other walk sites. Next up is the poker tournament my buddy Ryan's putting on (he's 31 with CF), another local CF walk, then our golf tournament for CF....busy time...but it's well worth it.

I'm sure you all know that last week we lost more precious lives to CF, I know we continue to lose people each day to this disease but that's the hardest part of reaching out and meeting the cf community. you make yourself vulnerable to pain. I would like to express my greatest sympathies to the families of Sam, Sonia and Emily...may they finally breathe easy and may you find the strength to keep fighting. Blessings to you.

Conner's due to end IV's tomorrow and we're going to clinic in the am to discuss if we want a short break, which would be great or if we want to keep going. Conner's continuing to struggle to breathe he's tied to his 02, last night at dinner he was on his o2 and still struggled and asked if his bipap would help him breathe easier...the sweetheart. This whole experience has been so difficult at times, and yet quite normal another moment. But its so heartbreaking. breathing shouldn't be something one has to work for, its a natural reflex, involuntary even, yet why is it that he has to consciously think about doing it...uhg. so my hope i guess for this week is for his comfort. whether thats on or off iv's...i just want him to breathe easy...

Here we go again...

Well...
The past few days Conner has had this very random fever only in the evenings. He's done this before, and we couldn't figure out what was going on. He's been on his oral antibiotics for almost the 2 full weeks, with a week off prior to that, and then 2 weeks of orals before that as well...its been a crazy year, he's only had 2 weeks off of extra oral antibiotics or IV's. He is due to end his oral antibiotics tonight. But I think we're not out of the woods just yet.
Yesterd​ay he kept getting progressive​ly worse, and now today he's really out of breath, can't talk much, can't walk much, really can't breathe w/o 3 liters of oxygen lyeing down on the couch. not good. His oxygen rate has been low the past few days as well. I've put in a call to the CF nurse Ben, and I believe we'll be taking Conner back to be admitted to the hospital again. Such a bummer.
See, CF has a way of doing this, trying to destroy plans and our spirits. But little does it know, that I refuse to let it destroy my fight against it. Next Thursday night is the CF Foundations Chefs Dinner where I'm speaking my "hate" speach against CF and I will be there even if we're in the hospital. I will not let CF destroy my fundraising fight against it. no way. no how. While I completely respect CF for the demon that it is, I think it doesn't realize the demon fight in me to bring it to extinction. I think CF doesn't realize the determinati​on us mothers feel to protect our kids no matter the cost, the fight, and no matter the suffering.
I won't pretend that this doesn't hurt us as a family. It will devestate Hunter to be seperated again. It will make going to work almost impossible for my husband. It will bring me to my knees in pain to be away from my family again, and to watch Conner endure this pain. It's going to make it all "real" again. But I know we'll find a way to get thru it. Luckily for us, they have lifted the rule of no siblings on the hospital floor...so maybe the boys can come to visit us and that'll ease this pain and make the transition easier.
Well and more than that, maybe they'll find the perfect combination of medicines to get him well faster, and get us out of there and back home sooner. Nobody knows, only God. and I will just continue to rest in his plan.
I will keep you as updated as I can.
Love
Sar​ah