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: firstname.lastname@example.org
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.