Monday, April 29, 2013

Stand up and fight CF with us on May 11th, 2013

Spring has finally sprung here in our neck of the woods and I couldn't be happier about that. To finally be able to look out the window and not see snow on the ground anymore - sure is a good feeling. Usually this is the time of year that I can't wait for, where we can let down our guard a little bit as flu season tapers off and most of the ishy illnesses have past. Unfortunately, for many reasons, this will be a spring and year to remember. Not only did we literally have snow on the ground until just a few days ago but it has by far been the worst year in terms of sicknesses for our family. The kids have literally been sick, back to back and so many times over and over again that neither Jeff nor I can keep it all straight. Of course I know that kids are little germ factories, I get it, but it all is coming together at a not so good time and it feels like we seriously just can't catch a break.

We are already on the verge of having to get a feeding tube for Olivia. We have been reminded of this time and time again, it's exhausting. While she was starting to show signs of improvement with weight gain once we introduced the periactin for appetite stimulant, the past 3 months have shown that things are no longer going in her favor either with or without it. Her independent self and food fight struggles only add to the lack of weight gain. Of course each sickness takes a toll on her too, she has to use up so many more calories to fight things off and that's piggybacked on top of the fact that on a "normal" day she uses more calories because of all that CF involves. So, more calories on a normal day + more calories during a sick spell + just not wanting to eat = not good.

It's been a tough and very hard year. To watch our progress slip away . . . to see the little round tummy that she used to have and the spots on her body where she had filled out gone, it's devastating, it's defeating, it breaks my heart. We work so hard, we fight with all we have and we still can't get ahead. There are so many setbacks day in and day out, so many of our days, weeks, months that feel like a broken record, repeating over and over again - gain some, lose a lot, gain some, lose a lot . . . over and over and over.  So as we sit here, stuck inside on this glorious spring day, not because of snow but because Olivia has been hit with yet another illness after not even being over the previous one, I again feel defeated. I am ever so reminded that CF rears its ugly head no matter what the season or the weather, it takes its toll constantly. I pray for a cure. So as we brace ourselves for the not so good things that are surely to result from Olivia's CF follow-up appointment next week, I know that we must continue to fight even harder to find a cure and make it a reality so much sooner rather than later.

In less than 2 weeks now, we have the opportunity to stand up to cf, fight back and raise some money for the Cystic Fibrosis Foundation. I pray for good weather, a good turnout and a good amount of money raised to support the CFF as the foundation continues to work tirelessly toward a cure. The Dreams for Olivia event will be held rain or shine on Saturday, May 11th, 2013. Since we are doing this event in lieu of Great Strides, for anyone who is interested in making a monetary donation to the event or to the CFF on behalf of Olivia, you can do so and either turn it into myself or Tyann on Saturday May 11th, or mail it to me ahead of time. If anyone is donating an item for the silent auction, and you haven't already contacted me, please send me an email as soon as possible with the item description, value and donor name so that we can have a bid sheet prepared for the item before the day of the auction. Email to: bm_fiala@hotmail.com

We have some really fantastic items this year and a few in particular that I am really excited about so we hope to see a great turnout for the silent auction and evening event.

ATTENTION GOLFERS: This year’s entry fee is $35/person which includes the fee for the golf tournament, a two meat buffet meal at PJ’s in Bingham Lake along with night entertainment provided by IV Play band also at PJ’s. The Golf Tournament is four person best ball, we will have a prize for the best team score, along with individual prizes for holes 3 & 7.  If you are golfing and have not already paid your fee, please bring it with you on Saturday May 11th and turn it in to Tyann or AJ or you can mail it to AJ beforehand, email me and I will get you his mailing address.

Again the timeline for the day is as follows:
  • Golf Registration starts at 2 pm at the Windom Country Club
  • 3 pm is the Shotgun start for the Tournament
  • 7:30 pm is the meal out at PJ’s II in Bingham Lake
  • 9:00 pm to 1:00 am is the band IV Play at PJ’s
I pray for a miracle for Olivia everyday but especially as we head into next week's appointment, because in all reality, it'll take one for the scale to be in her favor. I brace myself for the not so good things that may come out of it and I put on my fighting gear as we head into this fundraiser to kick some CF booty and raise serious money to get us closer to a cure for this disease. A big thank you goes out to all the individuals and businesses who have donated to the event and/or the silent auction and to all of those whom will be golfing with us this year - we wouldn't be successful without your support.  


Monday, April 22, 2013

Updates

Sometimes I wonder if the scale is wrong. Both Jeff and I swear that Olivia has felt heavier when we've picked her up lately, which is a great "feeling" but then it never fails, the moment I put her on the scale - it's not so favorable. I've gotten my hopes up in the weight category time and time again so you'd think I'd be less optimistic about it by now but I still hold out hope. While we have gained ground over the past couple of months compared to all the weight Olivia lost from a combination of being ill and just not wanting to eat, her current weight is less than it was at our February CF clinic appointment. Usually we go into clinic and at least have a 1/2 lb weight gain but I'm thinking this will not be the case at our next cf followup in 2 weeks. Ugh. I shudder to think what kind of report we are going to get if that is the case. So it goes, we'll pray for a miracle and ride out these next few weeks doing what we can without pushing too hard to get Olivia to eat and gain weight and see what happens. There is only so much we can do to get her to eat, we can't force food down her throat, she'll just vomit it up, literally, so wait and see I guess. Olivia is at a tough age where she wants that independence to choose and do what she wants when she wants and that carry's over into the food struggles we endure with her daily.

Aside from the weight issues, Olivia is doing fairly well otherwise. It's been a very long winter with more than a couple of bad illnesses wreaking havoc around our household and taking their toll. I wish spring would officially show up as we are all itching to get outside and enjoy nicer weather and sunshine and hopefully the end of cold and flu season. With 8 inches of new fallen snow hitting last week and another winter storm forecast for tonight I'm wondering when spring will actually appear . . . and, with that being said, I pray that all the snow is melted and the ground is dry enough for the golf tournament and the Dreams For Olivia event that is just under 3 weeks away now! We have some really remarkable items for the silent auction, the golf tournament is at full capacity or very near that and the evening entertainment is sure to please everyone. We are beyond excited for this event this year and the money we can raise in honor of Olivia to support the Cystic Fibrosis Foundation.

Other than that, life is cruising by as usual. We are enjoying our days in this extended winter even though we are mostly stuck indoors. Landen and Olivia both started spring swim lessons a few weeks ago and are enjoying it thus far, when they aren't canceled that is due to inclement weather! Landen is going to be in t-ball this summer and we are all looking forward to watching that. Can't wait for warmer weather and more time spent outdoors.