Spencer is doing really, really great! =) He's had a few off days - but we all have them. Just wish those rough day's would be, well, quite so rough. When he has a down day - it's a REALLY down day, but every single time the next day has always been 110% better, so we just don't dwell on those days. Hopefully we can start to figure out a way to get the down days turned around when he feels it coming on!
His lungs are holding up very well. Spence had clinic a couple weeks back and his doctor mentioned how he sounded a little tight, but not terrible. His oxygen saturations have been doing pretty good, and she made the comment that he looks very very well - always GREAT to hear from the doctor. She was a little concerned that he might be catching a small bug so we talked about admiting him for a 10 day stay to catch it early - but the doc decided that since he is starting TOBI and has been doing a good job at home that she was going to give him a chance without antibiotics this time - seems to be working!
Unfortunately, Spence caught the stomach flu THE DAY OF clinic... He was doing fine before, but when we got to clinic he started throwing up and spiked a 103 + fever... perhaps at times even getting up to 104. Had it not been for the stomach flu, he probably wouldn't have been admitted. He had about a week in the hospital for it. But he got to steer clear from the antibiotics!!!!
He has another appt on the 6th - if he's feeling well, They said he doesn't have to go, but if he's not up to par for a trip to Kansas for Christmas, then he will probably be admitted. We're working really hard to keep him well and so far things have been going smoothly. TOBI is being taken, trying to squeeze 4 treatments in a day but usually it's only 3. Doing manual CPT when we can, taking meds regularly - it's working! HALLELUJAH! The doctor said that she thinks all the hard work is really starting to pay off!!!! AH It's SOOOO great to hear that from her. He's been deemed as non-compliant for various reasons in the past and he's trying SO hard to get that switched around so that he might be able to start Cayston in the future and also get on the transplant list when needed. I can see a huge difference now that Spence is working hard, but hearing it from the doctors is just WONDERFUL news =) Spencer should be PROUD!
Aside from all of that - Spence is going to start volunteering at his grade school with his 5th grade teacher!!!! He's really excited about that. He thinks that his career of choice is a teacher - He'd be great at it. There is a pretty big infection risk, so that's why he's doing some volunteering now, to see if that's going to be a problem or not. He's prepared to take extra precautions from the students. Wearing masks, asking everyone to sanitize hands, washing his hands a lot, only working in groups of 3-5. I hope this works out for him!!!!
Noooowwww. TO BE THANKFUL!
I find a lot of things that I am thankful for this year have to do with Spencer. We've went through such a long and grueling battle this past year and to look where we are at right now - I am MORE than thankful how far Spencer has come, and how much are relationship has grown, despite all the hard times.
So specifically, what am I thankful for?????....... Here it goes!
My family; if it weren't for them I would not be even close to where I am today **** Spencer's family; they have taken me in for the time being so that i wouldn't have to live in the dorm and I am SO grateful for all of them, even though it is a little stressful ;-) **** While I am not thankful for my Crohn's disease, I am thankful for the person I have become because of it; these last couple of months have really proved the amount of strength, will, and drive that I have **** I'm thankful that Spencer has been antibiotic free for about 1.5 months **** For the time that we get to spend together **** For all of those good days, CF and IBD wise **** That I have such an amazing fiance **** My friends... old and new ****
Trust me... there are SO many other things that I have reflected upon this Thanksgiving for what I am thankful for.... Just too many to post =)
Hope you have all had a WONDERFUL and joyful Thanksgiving with your friends and family!!