Wednesday, May 28, 2014

3rd Annual Dreams for Olivia - Thank You!

On Saturday, May 18th, we had our 3rd annual Dreams for Olivia golf event and silent auction. With each passing year, the event becomes so much more fun. Everyone out there is donating their time and putting forth money for a day of golfing to raise money for the Cystic Fibrosis Foundation. Over the past 3 years, this has been a wonderful event that raises an impressive amount of money from a pretty small, tight knit crowd. We know that every dollar raised is so important and we thank each and every single person and business that supports the CFF in honor of Olivia through this event.

I was reading an article awhile back on the progress of the CFF and research over the years and I came across a paragraph pertaining to asking individuals to donate money to put toward research. A part of it really caught my attention.

You see, fundraising is hard, it gets a bit more challenging every year to continue to ask, often feeling as if we are begging for people to donate. We ask people to put forth money to fund a cure, something that may come soon, may come later or frankly may never come at all, no one can know for certain. We ask for people to donate to provide hope of that cure, to provide hope for better methods to manage this disease until a cure comes. It's difficult to ask, even more difficult for some I suppose to put money toward something that may not happen for a long time - right? With that being said, we know the CFF is doing something - wonderful somethings with the money. By now most everyone with some association with CF or the CFF has heard about the wonder drug that is Kalydeco. This is proof, this is evidence that the CFF is doing what they should with the money, they are working toward treating the underlying cause of this disease. They are making progress, they are using our dollars for the best possible thing: a cure and a way to conquer this disease.

Anyway, back to those words that caught my attention, Joe O'Donnell a cf parent said in regards to the research,

"We’re taking every dollar you give us and putting it into research. And guess what, we could end up with nothing. But for sure, we're going to end up with nothing unless we do this." 

That's it exactly.

Short, sweet and to the point, and it sums up why we do, what we do and why we continue to do it - because it's so very true. Unless we fundraise, unless we continue to ask for people to donate to research we aren't going to find a cure, we will end up with nothing. The proof is in Kalydeco. Without the research to fund it we wouldn't have it. Without continuing to raise money to put toward research we won't get a "Kalydeco" for the other 96% of the CF population.
 To read the entire article, click here.

So, we want to extend a very big thank you to the organizers of this event - Tyann, Hilary and AJ. Thank you for putting this event on for the past 3 years and creating a day full of fun and good times to raise money for a cause that is very dear to us. 

Thank you to every single one of you who came out to the event to golf and/or bid on silent auction items. 

Thank you to every one who donated items to the silent auction this year. We had so many wonderful things that raised a lot of money. Thank You, Thank You, Thank You!

A big thank you to every one of our business sponsors, everyone who made a monetary donation to the CFF in honor of Olivia and everyone who bid on silent auction items to raise money for a cure.

Thank you to the WCC for hosting this event again this year.

Thank you to Grandma Pam and Grandpa George for watching Landen and Olivia again this year so Jeff and I could enjoy the day spent at the event.

From the bottom of our hearts, thank you to everyone who helped us raise . . .


This year, we are blessed to be able to present a very impressive $4,781 to the Cystic Fibrosis Foundation on behalf of Olivia through this event.

Over the past 3 years, we have raised over $16,786 for the CFF though this event alone, quite amazing indeed!

Again, a big thanks to all of you who made this happen and for continuing to support the CFF. As we continue to muddle through this journey day in and day out, through ups and downs, it is times like these, seeing what we can do, seeing the differences we do make in the lives of those with cf, that keep us trekking on, keep us fighting for a cure, keep us hoping for better days and a brighter future for Olivia.

Thank You!

On a side note, Olivia's culture report came back clear so thankfully her lungs are not harvesting any nasty bacteria at this time, one huge less thing to fret over. We will continue to enjoy our summer, making the most of our days left sans feeding tube and know that regardless of the emotions and uncertainties and fears and feelings of failure that are a result of the upcoming g-tube surgery that we will keep fighting and muddling through and will always do what is in Olivia's best interest. We will continue to pray for brighter days ahead and relish in the joy and success of our Dreams for Olivia event. 

Tuesday, May 13, 2014

The Good, The Bad and The Ugly - May CF Clinic Appt

Yesterday Olivia had her CF follow-up appointment. As always, it was a stressful day, full of all kinds of emotions and many tears.

She had her annual studies yesterday, which made for a very long appointment, well over 2 hours. She had her yearly chest x-ray to check on her lungs. She also had a boatload of vials of blood taken for which they will check so many things, including vitamin levels and pretty much everything under the sun one can measure from a persons blood. We also struggled but got her to provide a urine sample so they can check things from that as well. All of this on-top of the normal/routine checks they do at her appointments every 3 months.

The Good . . . Her chest x-ray was good, her lungs are holding stable from last year so there was nothing to be concerned about there. Thank goodness, that is so very important and such a relief and honestly we needed some shining light after all the other things we were hit with.

The Not so Good. . . Since Olivia is small yet, her chest x-ray also includes her stomach/intestines and both this year and last year's x-ray have indicated quite a large amount of stool backed up into her intestines. CF produces thick sticky mucus . . . everywhere. This includes the intestines so even with the proper number of enzymes at each feeding, along with good hydration and lots of added salt, things still get backed up, constipation occurs which can also lead to a partial or full blockage. Given Olivia's history of meconium ileus at birth, the chances for her to develop DIOS are highly likely so this is something we need to keep an eye on. Earlier in the year she did develop what our cf team thinks was a partial blockage causing, nausea and vomiting with less stooling. Since Olivia has also voiced to us that she has belly aches, this is probably the reason - so for now we will start miralax. We will administer miralax for the next 5 days and see if we can get all systems going again. From that point we will use it when we see necessary. We need to evaluate how she does with it over the next 5 days and go from there.

The Bad & The Ugly . . . Olivia only gained a few ounces from 3 months ago and she did grow taller so her BMI has dropped again. Over 3 years we've been fighting this fight, feeling threatened with a g-tube, having every single day be so much about "eat this, eat that, have one more bite, one more drink". The plug has been pulled.

When we go back to our next CF follow-up in August, Olivia will have a 2.5 hour oral glucose tolerance test (OGTT) to determine if she has CF related diabetes (CFRD). Our practitioner told us it is very rare for a a person with CF this young to have CFRD, but she wants to check this first to rule it out because they have seen in the past that a lack of weight gain can be contributed to CFRD. If and only if this were the case, that Olivia's CFRD test comes back positive, which again, is very rare and highly unlikely, we will treat the CFRD and hold off on the g-tube, for now. If Olivia's CFRD test comes back negative at this time, we will proceed with the g-tube placement. This will require a consult with the surgical team on one day and then the actual surgery on another day, followed by a 3 to 4 night hospital stay to make sure that Olivia can tolerate the nighttime feeds through the g-tube and also to make sure that her vest treatment doesn't cause pain to the surgical area.

Obviously, both Jeff and I are devastated. No, a feeding tube is not the end of the world, but it's just something we didn't want. It's just another indicator of the havoc this disease is doing to my daughter, the progression of this disease. We've been reassured that Olivia's lack of weight gain isn't our fault, it's nothing we've done wrong, it's the nature of this wretched disease. We know this, we believe this and I don't feel as if I've failed my daughter. Gees, I've tried so damn hard, I've spent hours upon hours trying to find high calorie/high fat foods to feed her. I've spent so much time sitting at the table trying to make meals fun, trying to encourage her to eat and drink, trying everything in my toolbag to do what I can to avoid this g-tube, but, the plug has been pulled, it's out of our hands, we aren't able to win this fight against cf, her body just can't do it.

Am I Heartbroken? Definitely. Yesterday was hard, very, very hard. I thank God that her lungs are well, but all this other stuff, is too much to handle. You can google CFRD, not good, not something I want her to deal with now either. You can google a g-tube, it will present a whole different set of obstacles for awhile too. I won't go into it, purely for the fact that I'm exhausted and do not feel like rehashing it again and again and again. It is what it is, our battle has not been won.

On top of this, we also have to await the ever nerve racking sputum culture results and hope and pray that they come back clean and she doesn't have any nasty bacteria growing in her lungs.

So, for everyone who has ever wanted to help, for everyone who has ever wondered what in the world they could do to make things easier for us . . . come August we will let you know, we will need help. We will not be able to do this alone. Olivia will have surgery and be in the hospital for 3 to 4 nights, neither Jeff nor I will choose to not be there, we will both be by Olivia's side for as long as we can before they take her into surgery. To that, we also have our son Landen, he will need someone to care for him. God willing that our 10-year old dog Shelby makes it and is still here in 3 months, she will also need to be cared for. My sister Darci has already offered to take time off and help out and do whatever she can, thank you for that, but 3 to 4 days is a long time, we will need help.

Please pray for all of us in the coming months. After all, summer is upon us, this is supposed to be a time of joy for all of us folk who live in Minnesota, a time to get outdoors and enjoy the warm months. This will still be the case but with each passing day, it brings us one day closer to August, to the inevitable g-tube surgery. It will be a hard time for Jeff and I as we prepare emotionally for this. Currently Olivia is scared of a feeding tube as she's felt just as threatened with it as we have, having it be rehashed and brought up at every cf appointment over the past 3 years, so we have this to overcome as well. Not to mention our son Landen, who can see the strain, stress and sadness upon our faces, but doesn't quite understand fully why and yet he wonders and cares and hurts with us all the same. Tough times ahead.