Lung scan results

My lung doc called and pretty much said the ct scan of my lungs don't show evidence of anything. Could mean the steroids are working, maybe I don't have BOOP, or that the local doc didn't know what she was looking. He wants me to bring the slides to my next visit so he can interpret them himself - typical and I already have them. So I continue to decrease the steroids and see if the cough comes back. Hopefully it doesn't this time and I can get rid of the roids for good. If not oh well - at this point I don't care anymore. I just want to stay on the healthy side and have no more set backs. If that means I stay on meds for a bit longer then so be it.

Alex and I are having fun hanging out at home. He is getting more vocal but not saying many words. He says ma, ba (ball), da (dad or dog), and more. He is sharing a room with Charlotte now and Lee has his own room. Moving the rooms was a pain but it forced a big clean up and things seem more spacious for the time being. Until the kids clutter everything up again.

Hopefully winter is quick this year - there is only so much indoor stuff to do with a toddler.

+365

Today is the 1 year anniversary for my transplant. A year ago today I really was in a fight for my life. I was determined to get better and return to a normalcy or as I said a carefree life in my post a year ago today. Since I have learned that there is no going back but just "keep moving forward" (to quote Meet the Robinsons). My life has been forever changed by this illness and in a good way. I don't take as much shit for granted, I still try to live in the moment and succeed some days, and I am learning to roll with the punches.

I am healthy today - okay just some minor lung stuff to wrap up - but really in such a better spot then before. Those bags of cells gave me back time to hang out with my kids, get to know Alex, and be with my family. A lot packed into some little bags and a drip.

So thank you god for giving me my life so I could have those lovely cells and allowing me another year to enjoy them.

CT tommorow

I finally got my CT scheduled for tomorrow. The insurance is becoming more of a pain in the ass since I am no longer a special transplant patient. Don't get me wrong I do NOT want to be back in that group but come on already it shouldn't take 4 days to schedule a simple scan.

I am worried about the side effects from these steroids. I am watching my sugar intake more since I am fearful about diabetes. I think the doc is more worried about my breathing than I am since he called and asked today how it was going.

Dave flew in Friday night and out again Sunday morning so we all got to see a glimpse of him on Saturday. He did get to see my cousin's new baby in OR yesterday - a bonus to all his travels. A picture of the new parents.

The kids are doing good. I have finally figured out Alex's sleep schedule. Whenever he decides to sleep through the night either Charlotte, Lee, or Maple don't. Last night he slept soundly while I was up from 1 AM - 4 AM with Charlotte. I have officially given up thinking I will ever get a good nights sleep - it is over rated anyway.

more steroids

I had an appointment with the lung doctor today. I had hoped to go up, get checked, and be removed from the steroids for good. On the other hand I had a poor breathing test, he hears more crackles in my lungs, and he increased the amount of steroids. He also ordered a scan for the next day or so to check things out. So I am going backwards and not forwards with these lung issues - drats! I am breathing easy and don't need the O2 support so that is good news. However he says I need to be on the steroids for another month. In another month I will seriously have 3 chins, chipmunk cheeks and pack on another 10 lbs.

So hopefully the additional month of steroids will get rid of the inflammation in my lungs for good. I will post if anything comes up on the scan.

Holidays

We had a great holiday with the family. We spent Christmas locally with my mom and Dave's parents. Then we went to AZ to visit my dad and family for the New Year, Lee's birthday, and the WVU game. The weather was awesome in AZ and the kids didn't want to come home.

Physically I am doing well. I am still on my steroids and have a chipmunk face to prove it. I have some doctor appointments this week to get rid of the tubes in my ears and follow up on my lung situation. I need to get off of these steroids and reclaim my face and body!

All in all I guess these are good things to be worried about and nothing compared to the big C.

I am posting some pictures of the little z's. Lee is getting so tall and skinny. Charlotte got taller but doesn't seem to put on any weight. We actually weigh her all the time because she wants desperately to move into a booster seat in the car. Her doc says not until she is 40lbs.....she only weighs 35. Poor girl. Alex is getting bigger and will probably catch up to Charlotte soon. He is getting more vocal but barely saying words. I think I heard him say more today.