Today Olivia had her CF follow-up appointment. She is a free-spirited, independent, energetic and very active little girl. She doesn't sit still - ever. She's constantly on the go. All the exercise she gets I know is so good for her lungs and that makes me smile, but . . . there is always a but, I hate it. Being so active she rarely sits still long enough to eat, her appetite is poor and frankly she'd just rather be doing anything else besides eating. If it were Landen, I wouldn't think twice, I'd chalk it up to "he'll eat at the next meal or when he's hungry, let him go, play and have fun", but with Olivia I just can't do that and it is purely exhausting.
I know I've said it before but I'll say it again, I seriously feel like I sit at the kitchen table all day long, and in all honesty, I probably do spend at least 5 hours a day there, doing all that I can to get Olivia to eat her meals and snacks with a very small glimmer of hope that it might make her gain weight. There is never a "hey, how was your day" conversation at our dinner table, it's always stressful and results in me trying my best to get her to take 1 more bite, drink 1 more sip of milk, to just do something to finish the food that is on her plate and the drink that is in her glass, it is getting old and even more so because it doesn't work and it isn't paying off. I try. I try so very hard to get her as many calories and as much fat as I can at each snack and meal and I am very punctual when it comes to meal time and snack time. I have a routine, I follow it and rarely do I deviate from it because I know how very important every single bite of food I can get into her is. I know I have not failed, I know I have given it my all but my time is running out, my time is almost up - pure and simple - it just doesn't work. It's not me, it's not Olivia - it's not us. It is this terrible beast that is CF. It is this horrible disease that my daughter has that is slowly but surely starving her.
So as has been the case in most every single one of our CF appointments over the past near 3 years, today was another not so fun CF day; a not at all fun appointment. The raw truth is, we have one more shot, at most 3 more months to turn things around and get Olivia to gain weight or she will have a g-tube placed to prevent this disease from starving her. A g-tube is not the end of the world, realistically it will probably be a blessing and a lot less stress for all of us having our entire days not be consumed by food and it will help her thrive. In the end, that is all I want, all I can hope for is for her to be able to thrive, gain weight like she should to have the energy to live her life and stay as healthy as she can. I know it is getting to the dangerous mark, she doesn't have enough weight to bounce back like she should when she gets sick, I am not dumb, I get all of this. I will not let my child suffer. I am thankful that the g-tube is an option, I cringe to think the alternative if this medical technology didn't exist, but for whatever reason, it has been and continues to be something I just don't want for her. I don't know if it's because there will actually be a real maker of what this disease is placed on her body, something that I will see and tend to daily or what but I just think it stinks. Again, I know it's not because I failed, like our dietitian repeated to me today over and over through my tears, "it's CF", I guess I just didn't want it to get to this point.
So although I know I have not failed my daughter, I still feel defeated. Defeated because there is no winning against this disease. It is awful, it is a terrible disease that claims the lives of too many amazing, young souls everyday who never ever give up fighting, it is not fair. It is so hard, hard to get these harsh reminders when in all actuality, Olivia looks okay. You'd never know just by looking at her that this disease is slowly but surely trying to rob her of life. So, where do I go from here - I turn to God. I never speak or blog much about my faith but it is there, tucked inside of me. Oh believe me, over the past 3 years it has been royally tried, it has been tested and it has definitely been questioned but I know that I would not be able to handle many of the daily struggles I have gone and continue to go through if there wasn't someone looking out for me - so yes, I do have faith. As my faith exists so does my hope. So I will hope that our last piece of arsenal in this fight for weight gain, might work and if not we will once again feel defeated but we will not give up and I know at that point, both Jeff and I will welcome the g-tube, because if it comes down to it, Olivia will need it to survive.
Our plan is to introduce Periactin, an allergy medication that is used in CF patients as an appetite stimulant. It may or may not work, it works for some people and not for others. The most common side-effect is sedation. While having Olivia be more tired and sleeping more may be something that will help her gain weight, that doesn't sound like a real "quality of life" thing but we will try. Our hope is that it will make her want to eat more and in turn she will and will gain weigh. We will monitor her weight every week and report monthly to the CF clinic as she can not afford to have her weight continue to drop. If it works, great, we will go from there, if not, well then we will head into the hospital to have the g-tube placed.
Day by day, as always we will go, praying for the best but also being prepared for the worst. And now, through tears and concerned looks from both Landen and Olivia, I pick myself up, carry on and continue with my journey, for I have hope and faith and I always know that no matter how rocky my road gets, it could always be so much worse.