Monday, February 28, 2011
Friday, February 25, 2011
One evening when Jeremy's family was here, W and Kayden were in the sitting room for awhile and then Kayden came out with this hat on! They had been taping paper together and making paper hats, boats and planes. He was so into this...so soon a boat was sailing on our floor and planes were flying. Perrin was not at all interested in any of it, but Kayden had a blast.
Last Saturday morning (Feb. 19), I went to a wedding...my dad's. This was pretty much my first "social" event other than doctor appointments since Jan. 2. It was a small wedding... kids, grandkids and great grandkids. Sue was always one of my mom's very best friends and they were first cousins. Her husband died nine years ago. She and Dad both love music and play different instruments...guitar, mandolin, harmonica, bass fiddle...they both have been playing in a group that gets together every so often. So...welcome to our crazy/wild/but fun family, Sue!!
Wednesday, February 16, 2011
I am not in the hospital! My PICC line was taken out at my Monday appointment! It did however want to stay with me awhile longer and took heat pack time and finally a PICC team nurse to get it out. I had a lovely bath last night and thoroughly enjoyed immersing my whole arm in the water. It had been 6 weeks since I could get my arm wet, so lovely, lovely...The other good thing is my littles were here awhile yesterday and I had great fun reading books to them and we all laid on the floor playing with the train set. I was hugged, kissed and loved on...
My PFT's at my Mon. appointment showed that my lung function has not improved one little smidgen, after all this time. It is down from where it was when this all started on Jan. 2. I still have very little energy and still short of breath, although that is better than it was. My lungs were still wheezy all over. My creatinine level has been elevated, which is one reason for no hospital and continued IV's...they don't want to see me have kidney problems, which can be caused by the one IV I was on. They did another blood draw to check. I also had a hearing test done at my ENT last week and the tobramycin has done some damage to my hearing. It's just frustrating, because I'm having problems with side effects and it didn't really help my lungs a whole lot! I'm now on a higher dose of prednisone...60mg. They are hoping that this will help the lungs. I really really hate being on higher doses of this! They are also going to send me to Cleveland Clinic to an immunologist to really work on the low t cell thing I have. Yesterday, my NP called and said my creatinine level was elevated even more and they scheduled a kidney ultrasound for today, so I did that. They are going to send me to a nephrologist (kidney specialist) too, they are working on scheduling that. I am used to doing IV's and bouncing back and being good to go for awhile...this time, it's not working like that! I think between the more mild CF and whatever the t cell thing is, my doctors are puzzled. I AM a puzzle. Or shall we say special...For sure unique. Anyways, that's pretty much it with the bad.
I just threw that in, sounded like it went together. Is that the name of a movie? Although I could for sure say it has been my hair and make up... I haven't really cared much about either! Oh well...
Wednesday, February 9, 2011
...cheese Pringles, I've been hungry for them and hubby is keeping me supplied.
...Coblentz chocolates from Gail (I AM eating healthy stuff too, really).