Friday, March 10, 2017

March 2017 CF Appointment

Last night as I was doing laundry, after I finally had the kids tucked into bed, I glanced at the tv and noticed that "Forrest Gump" was playing. It was just a few minutes from being over but I was immediately hooked and sat down to watch the ending. Jeff had joined me by this time and as the credits literally flew up the screen as the movie finished; it started all over again - I told Jeff to set the DVR and I'd watch it sometime, when I have a moment.

Image result for forrest gump

On the tv guide screen, it said the original air date was 1994, man did that make me feel old and seriously, Tom Hanks was a very young man in that movie!

I couldn't help but say aloud the infamous line from the movie, "Mama always said, life is like a box of chocolates, you never know what you're gonna get". Jeff said I pretty much nailed the southern accent, by the way 😊

I digress, but as I thought about that quote, I couldn't help but agree with it and how true those words are. It's funny because at lunch yesterday the kids and I were talking about planning out your life. I had told them there is a quote about telling God your plans and he'll laugh or something like that. I told them if they were really curious, they could Google it, but the point I was trying to make to them was that they could plan their lives and future out all day long but to be prepard for it to change. I told them that never had I planned or imagined that I'd be a stay-at-home mom; life changes. So it was rather ironic that on the same day this topic was our lunchtime conversation that this movie caught my attention.

 "life is like a box of chocolates, you never know what you're gonna get", - so very true.

On that note, never in a million years would I or could I have ever planned to include cystic fibrosis in my life, but none-the-less, here we are, day in and day out for the past 7 plus years swimming in the depths of it.

Life changes.

Olivia had her first CF appointment of 2017 on Tuesday. We had all planned to go to the appointment as Jeff likes to be at all of them with us to police the germ control portion of the day. I'm thankful for this because he's much better at telling people to back off, check themselves and ask questions if needed when it comes to protecting Olivia from germs. Unfortunately, as luck wouldn't have it, Landen had come down with a cold a few days prior so we decided it'd be best not to have the entire family of 4 all in the confinement of a small car for an hour and a half sharing germs. Olivia wanted me to take her and I wanted to take her as I've never not been to an appointment and she straight up told Jeff, "well, you don't know all of the stuff like mom does", touche young lady, touche.

I was very apprehensive about not going to her appointment for I've seen what is supposed to be a rather uneventful appointment turn into much more than that, such as the case in May 2016 when Olivia went in for a pre-op and ended up in the hospital for a week long stay due to her first cf exacerbation. However, at that time she was ill and had been for quite some time, so given the fact that she has been doing extremely well I told her that daddy could take her to the appointment, I'd inform him of what he needed to know to fill out the paperwork and that I'd stay home with Landen and teach him his school lessons so that by the time she got home I could work with her on her schooling. In the end she agreed, and her and daddy headed off to the appointment.

From the shortened recap I got, it went well. Her pft FEV1 values were above 100% and remaining consistent so that is a blessing. Her weight and height were up and her BMI for what has to be about the very first time was at the 51st percentile. Olivia said the nurse really jammed the swab into her throat for the sputum culture, which I agreed can't be fun but said that hopefully it means they got a good sample. Thus, we wait on pins and needles for the next week and a half, hoping and praying that no nasty bacteria shows up on the culture report.

Olivia has been doing well, so I expected it to go well but I never let my guard down as cf, can and will throw that curve ball.

Jeff and I can both tell Olivia has been doing great in the weight gain catergory, which just a few years ago were words I never could have imagined typing. Weight gain has always been her struggle. The g-tube certainly wasn't the fix all but it coupled with the periactin so that she actually eats, being healthy and Orkambi, all seem to be working in her favor as of now. Since she's been doing well we've been giving her one night off a week from the g-tube overnight feed. It's amazing how much Olivia and I look forward to this night. Olivia doesn't feel locked in her bed so after I tuck her in and she's done reading to me, I'll hear the pitter-patter of her feet and then not even a second later she'll join Landen and I in his bed as he reads his book to me. She giggles and bounces up and down, clearly overjoyed by this freedom from her machine. Such a small thing, getting out of one's bed easily, that most everyone takes for granted.

I look forward to this night off too because it's one less thing that I need to do in an already overly long and still growing list of things pertaining to cf care. Jeff once told me he needed a list for the night that he had to do Olivia's nightly routine when I was gone and I think it took him three times as long as it does me! Every night before I tuck Olivia in it's: snack with pills and Orkambi, mix up the miralax and adminiser via g-tube, do Olivia's nasal rinse and then get the g-tube feed ready and hook it all up. So it's one night a week that I don't have have to crush enzymes, mix formula, prime the machine and hook it all up with what is almost guaranteed to be a night of interrupted sleep as the feeding pump continues to alarm on and off from a squirmy little lady pinching the tubing. Getting the g-tube ready and hooking it all up doesn't take me too long anymore, afterall I've been at it for almost 3 years and can probably do it blind-folded but it's still one more thing to do before I get the kids in bed each night when all I really want to do is sit down at the end of a long day. Olivia reserves her night off for the weekend, usually Saturday night, which makes the weekend that much better! Olivia knows that in order to keep up the 1 night a week of 'g-tube freedom', she has to keep her weight up and keep eating well during the day and that at any time this can change.

Last week a nurse asked me as I rattled off this and rattled off that, how I did it all and who helped me? I told her no one, that I do it on my own with the ocassional help from Jeff when he's around but all in all it's me and that yes, it is a lot of work, but no, I'm not superwoman. I thanked her for telling me I am an amazing mom, but told her I'm just a mom, doing everything I can to keep my little girl around and that yes it's overwhelming and stressful and a lot to do day in and day out, but life changes, we adjust, roll with the punches and keep pushing on. Life . . . it really is like that box of chocolates isn't it?

And here's one for the road . . . I have to throw this out there, I cried when I saw it. I mean the one card on the refrigerator I'm pretty sure is from the first climb Cole did with us, that seems very long ago. This is from our good buddy Cole's refrigerator and all the drawings and cards he has on it from our family and the kids from over the years. I was utterly surprised that he still has things on there that were sent many years ago and I reminded the kids that it's the little things in life that mean so much, a drawing here a thank you card there . . .