Christmas Break

I know I have been horrible about updates, but in my defense life is busy busy busy.... The kids are now also on Christmas break, and the 7 day countdown to Christmas has officially begun. I am taking a few minutes to give an update on the kiddos :)

Josh: what can I say... my boy is not really such a kiddo anymore... he is growing up so fast... he is getting so tall, and mature, I am so proud of my boy. He recently told Steve and I he thinks he'd like to be a doctor. I don't know if this is what he will end up pursuing or not, but I am so glad to finally here him making plans for his future education. Maybe it is because as much as Steve and I have always stressed the importance of continuing their education with college, he now sees us practicing what we preach, as he sees me going back to school myself. Whatever the cause, I am also overjoyed that he is setting his sights high and pushing himself. He is working on bringing up his grades, but he is still a kid, and having fun with his BMX and playing X-Box as well. I enjoy watching him having fun, and we even had a day where he was home recently with just myself and Gabby and we just hung out together and he tried to explain the X Box stuff to me.... as much as I really don't get into that kind of thing, I really enjoyed the time with just me and my boy, not to mention watching him and Gabby together just warms my heart :)

Kaitlyn: There is always so much to say when it comes to Kate... she is working on getting better with her medicines... I am trying so hard not to nag nag nag, but I see it as my job to do so until she gets her treatments done. I know it is partly because she is a preteen, and partly because she can remember well her life without treatments, but she really fights me on some of her medicines and treatments. She is really good about doing her breathing treatments for the most part, but I have to remind her to take her vitamins and antacids, and no matter how many time I tell her to take her miralax, she fights and fights and just won't drink it unless she is backed up and doing a clean out. It got to the point where finally when discussing it with her pulmonlogist at CF clinic last Wednesday, he actually contacted her GI doc and requested a different medication.... she started that yesterday, and thankfully it is something that can be taken in a medicine cup instead of drinking 8 oz of the stuff. Hopefully she'll be better with this medicine. As for her lung issues... she was having difficulty lately, getting tired out quickly, as well as once again complaining of the stabbing pain and "bubble" in her chest... only this time it was under her rib not near her heart. Because of this as well as being a little backed up due to not taking her miralax, they have asked us to bring her back up this week to do a chest x-ray. Hopefully that will go well. Her PFT's make me a little nervous each time we go up there... it seems like every time we go they drop a percent. That may not sound like much, but when you are going every month or so and it continues to drop, the percents add up.... this time was no exception she dropped from 80-81% last time to 79% this time. I know that I should be happy she still has relatively good PFT's, but when I consider that after she was diagnosed and was treated for the first time in the hospital, her PFT's were 104% at the first check up post hospital stay and then hovered in the 90's for a long time after... to me that is a significant drop for a year. As a matter of fact, I asked her pulmonologist if they were going to continue to decline so steadily and he said they shouldn't, but so  far they are. They didn't seem as concerned, but they did culture her again to see if the pseudomonas had returned, and we should get those results sometime next week... if it has returned, they want to start her on yet another new medicine called cayston, to see if she does better with that then the Tobi or the Colistin. They also ordered her a new nebulizer, as they agreed with me that hers is not working properly, and this is the second time in only a little over a year that we've had to replace this one, so they are not going to order with Allmed again, this time we are going through the CF Pharmacy, so she is getting a better model nebulizer as well. We are all hoping this helps with her breathing treatments, as part of the difficulty of getting her to do them without argument is the time they take, and they are only taking so long right now because the nebulizer isn't working right. I am planning on calling the CF Pharmacy tomorrow to see when they are sending that out, hopefully she will have it by Christmas. Speaking of Christmas, Kaitlyn is so excited... but she too is growing up fast... she decided this year she is a little big for pics with Santa, so pics with Santa were of Gabby alone. I guess you can't stop them from growing up, no matter how much you may want to slow it down. This is also the first year we have had trouble with Kaitlyn and her grades... she fell a little behind this semester, but she worked hard to catch up, and we are hoping she gets honor roll when her grades from finals are in.

Gabriella: What can I say about my little handful? She is getting big fast too... She is growing fiercely independent... she throws a fit when you try to feed her, she wants to do it all herself. She still doesn't talk much other than the baby babble, but she is getting good with names... she says Mom (or Mama or Mommy) as well as Dad (or Dada or Daddy), she says "Bub" which is what she calls Josh short for "Bubby" which is the nickname we used for brother... she also tries so hard to say "Sissy", but it comes out sounding more like "Titty". She can say "Nana" and "Pop" but she is still working on "Auntie". She is also saying "Love You" and "bye" but only sometimes. Gabby is our little mimic, she copies a lot of what she hears... for instance one day when talking to the kids I jokingly said "Duh" and she repeated that until we were all laughing and in tears. She still doesn't say food words like milk or juice or eat, but I am hoping that will happen soon... right now she just does the milk sign... which is really "give me" in her mind, and she kinda whines at you with it lol. She definitely gets her point across though when she wants something. She has been doing better with her belly troubles, but I am pretty sure she is still battling the C-Diff infection. We still don't know how she got it in the first place as she had never been on antibiotics before, but I am convinced she picked it up at daycare since that is where it all seemed to start. Her GI ordered another test to see if she still has C Diff (or has it again), but Kaitlyn put the paper in her room and it disappeared. I asked the nurses to fax me a copy, but they didn't so i have to make that call again tomorrow as well. All in all Gabby s doing great, and we are all excited for Christmas with her this year as she's a little bigger and hopefully will enjoy it more. One thing for sure, she really didn't like Santa this year... Kaitlyn never went through that, but Gabby made it crystal clear, she is not a fan of the big scary man in the red suit.

That is about it for the kiddo update... Steve and I are doing okay too... he is working hard leading up to his vacation, which officially starts on Christmas Eve... granted it's a staycation, but it's the first time ever he's taken more than a few days off at a time, so we are looking forward to ALL being home on "vacation" at the same time. We are all looking forward to a lot of family time :)

Also last but certainly not least... my Mom and Dad.... if you are reading this, please take a minute to say a prayer for both of them. This last hospital stay was pretty rough on both of them. My Dad's anxiety was up, and of course he lashed out at the doctors and my Mom... it isn't easy to watch your loved one suffer, but it's even harder when they get so upset and take it out on you. It's also very hard to here him say that he doesn't think he's going to make it and that this is really killing him (he meant literally not figuratively). The doctors had to adjust some of my Dad's meds and he is doing better, but they are possibly headed into a four month long stay (for the bone marrow transplant) which will be infinitely harder on them both as it will be much farther away (as in Tennessee) and we won't be able to just drive up and visit so easily. They found 5 possible matches for the transplant, but they are doing further testing, and we are hoping if one of them is determined to be a match he will be heading for the transplant shortly after the new year. We are feeling so blessed especially to have 5 possible matches, it can't be anything other than God's hand at work!

Thanks for keeping up with the kiddos, and thank you even more for the prayers... Love to all - Kelly