Friday, December 23, 2016

2016 wrap up

Do you ever have those days where things just aren't going right, and you know exactly what you want to say but instead you say something else? The whole, what I want to say is this . . . what I actually said was this . . . Somedays, I wish I was more like my sister Amber, or my daughter Olivia, without a filter and could just say exactly what I was thinking, regardless of how raw it may be. Sometimes I'm like that, most of the time I'm not, and most of the time I just end up ranting to my sister Darci, telling her what I want to say but didn't.

It's been a long few months. To say that Landen, Olivia and I are more than ready for our winter break from school, is a vast understatement. Christmas has come so quickly and between all the holiday activities and traditions we do, added to trying to finish out the semester strong, to be a teacher, a mom, a homemaker, what often feels like a medical professional . . . it's been so busy, too busy.

The holidays are wonderful, albeit a bit stressful. Every year I continue to get the emails from the CFF about "staying healthy this holiday season while celebrating with family". Opening those emails isn't really a reminder or a new sting, it's the way we live our lives everyday, but maybe this year the slap is a bit harder, because with schooling online at home, we are already doing all we can to keep Olivia healthy aside from just living. Maybe it's the reminder that CF is ever present and a big deciding factor in every thing we do or maybe it's the fact that Olivia is now 7, living with a progressive disease that each year wreaks more havoc. Maybe it's the fact that we have 1 hospital stay under our belt already and know that another one will arise - not an if, but a when. Maybe it's the fact that it seems we just can't catch a break lately. I'm not sure, it's just been a lot. A very trying and testing time as of late.

Olivia finally overcame her fear of choking and dying. Once we started the periactin back up she had an appetite and was hungry so she actually just ate without having the mind games affect her eating. One hurdle cleared.

A few days later, we got Olivia's culture report and she had again cultured staph as well as a new bacteria she's never had before, klebsiella. This isn't pseudo or b.cepacia but still, it's another thing. I've been told it's not a bacteria that usually causes pulmonary problems but if you know us "probably" never sits well, we've had too many situations where the "probably" has turned into a for sure thing. There is nothing to do about it since she's healthy and I was told the staph would be treated if she were symptomatic as compared to the other. So Jeff and I pondered the new bacteria and figured that given the fact that the new bacteria "probably" won't cause symptoms and that Olivia is healthy right now is the best we can hope for. Just typing those words and saying them really sucks, to have to live and have the mindset of "it's the best we can hope for" when it comes to your daughter's health really does suck. But, in order to stay sane and keep going, what else honestly can we do, aside from accept and move on. And in true fashion of not catching a break, Olivia had 1 ear infection a month ago and finally was able to hear again out of both ears for a little bit only to tell us us Monday her ear was clogged, again. Another visit to our ENT to find out she has another ear infection in the same ear. 10 more days of ear antibiotics. Oh the joys of CF.

Yes, it's been a lot. Yes, we are ready for a break and to catch a break.

However, for all that we go through and all that we deal with and for how down times can be, I always know it could be worse. The stories I hear about those this holiday season who are celebrating without a loved one, or those that have been recently diagnosed with cancer or something else, there are so many crummy, crummy things. Olivia herself will remind us when she's in the hospital or clinics and sees small kids going through chemo, fighting for their lives, how sad it is, how unfair life can be. Seeing others fighting like hell against diseases that are trying to take their lives too, most certainly doesn't make one feel better, it just adds to the crack in our hearts a bit more. Yes, life most certainly can be and seem very, very unfair at times.

Last night Olivia asked me, I think for the first time, if she could die from CF. I told her yes. She gave me a look of huh? and I clarified. I told her, "You aren't going to die today from CF. You aren't going to die tomorrow from CF. We work hard everyday to keep your lungs healthy and to keep you healthy". I told her that her lungs would need to be very, very sick. She quickly asked me, "Like when I was in the hospital?" I told her that yes, her lungs were very sick when she was in the hospital, but she got better, her lungs are better and we are going to keep working to keep them healthy. I told her that she would likely not die from CF for a very long time and followed it up with the fact that we can't live in fear. I told her that I could die tomorrow of something. I told her anyone of us could, and said that we can't let that scare us out of living. I told her that everyday we do all we can and will continue to do all that we can to keep her healthy, always. She seemed content with that and continued to finish all of her supper.

She's wise for her age, my Olivia, yes she is.

So as we push through to finish up our last day of school before break, (yippee) we are going to work hard, have fun doing it and celebrate our winter break tonight. The kids anxiously look ahead to the magic of Christmas and celebrating Jesus' birth. We look forward to rounding out 2016 with a big bang and a fun vacation and look ahead to 2017 with optimism and hope for a blessed new year. As we look back on 2016, we know we are blessed for the year we have had together, the memories we have made and will never forget.

Today, what I really want to say and what I actually say are aligned:

 I wish you all a very Happy Holiday Season and a Blessed 2017. 
May your blessings be great and may you never take time for granted. 

Here's a picture walk of 2016.

February - The CF Climb

March - Awards at Sunrise

May - Hosptial stay for CF Exacerbation

A Mother's Day we'll never forget.

Olivia's Kindergarten Graduation

June 2016 - We said goodbye to our beloved Shelby

April 2004 - June 2016

Last Day of school June 2016

My Broken Elbow 

Landen's 9th Birthday 

July - Enjoying Summer

May, June, July, August . . . Dirt Biking 

June, July & August - Swimming


August - Starting and Finishing off the Schoolroom 

 First day of 1st and 3rd Grade - August 2016

September - Twins Game 

October - Olivia's 7th Birthday 

 Happy Halloween




Tuesday, December 6, 2016

December CF Clinic

Yesterday, Olivia had a follow up with the CF clinic. It was a good appointment.

Her pft numbers have gone up with her FEV1 being above 100% now which is a blessing to see, beings that back in May her FEV1 had dropped down to 77% when she was in the hospital. Knowing that lung function isn't always able to rebound after an exacerbation, added to the lung disease that is CF, we are grateful that Olivia's lungs are functioning as they are.

Back in September, Olivia's weight was very low. She weighed less then she did in May when she was admitted into the hospital. A lot of ground needed to be made up in the weight category. Even with the nightly tube feeds, her lack of an appetite was clearly taking a big toll on her weight and in turn was causing her height to stabalize rather than continue to grow as it should.

We started Olivia back up on a much lower dose of periactin in September to see if we could stimulate her appetite enough so that she would 1) actually eat something during the day by mouth and 2) gain weight. Given the awful side affects that the higher dose she had been on would have on her emotional and mental state, we looked into other options but in the end, for her age periactin was it. I was pretty skeptical that the lower dose would do much, given that the higher dose we'd had her on for years worked for awhile, then tapered off and then did much of nothing. However, we did as instructed and were surprised that the low dose didn't have any ill side affects at all and also that the lower dose did enough to actually help her appetite. She began to actually eat something during the day and in turn gain some weight. She had gained over 5 lbs in the past 3 months, but do to a new fear resulting from a scary dream she had about choking and dying, she has lost a pound in the past week and a half. However, yesterday at clinic she had gained right around 4 lbs since September and her height had increased as well so we were all pleased with that.

For the next 2 to 3 weeks, we will stop the periactin since the effects of it have come to a hault and then start it back up and hope it will again increase her appetite, all while trying to convince her that she isn't going to choke and die so she will actually continue to eat something during the day. This kid, will swallow 8 enzyme capsules, 1 vitamin D tablet, 1 periactin tablet, 2 study pills and 1 omeprazole capsule all at the same time with no trouble. Literally, a handful of pills. Jeff and I have tried to tell her that if she can do that, just fine, the fear of choking and dying on for say yogurt, a food one does not even need to chew, is clearly all in her head. Reasoning with a 7 year old however, is no easy task. Thus, the hope is now that since she's done so well with her weight gain that we don't lose all the ground we have gained since she is off the periactin and has now developed a new fear to eat.

Ugh, it's always something it seems; 1 step forward and 2 steps back.

We have a vacation coming up later this month and I've told Olivia that if she does well eating and keeps her weight up we can leave her tube feeding supplies at home. Flying and going through the airport with her vest machine, nebulizer and all her meds, as well as luggage for 4 is more than plenty but if need be we will add in all the formula, tubes, bags and feeding pump as well. I know she'd like a "vacation" from her g-tube but we will see. I'm not willing to let her weight drop drastically in the process.

Aside from that, the rest of her appointment went well. Her ears look pretty good now after dealing with them being clogged and/or infected for the past 2 to 3 weeks. Her lungs sound clear, she has no daily cough so now we await her sputum culture and keep on doing what we are doing and return in 3 months for her next follow up. All in all, a good visit.

Time is flying by, I'm not sure how we are already into December and counting down the days until Christmas. The kids continue to do well in school at home and I continue to adjust to being their teacher while trying to get all the other tasks done, like cleaning the house and laundry as well as cart them to and from their extracurricular activies Mondays through Thursdays each week. It's a learning process and one where things are prioritized and some things are just let go but all in all, for being in our 4th month of this new routine, we've adjusted pretty well.

With Thanksgiving behind us and Christmas just ahead, we wish you a very happy holiday season.