Monday, August 27, 2012

CF Appointment Update

Today I feel both mentally and physically exhausted, some days it all just gets to be too much. . .

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. 



Thursday, August 16, 2012

Lots of Fun

Last weekend we took a camping trip with my side of the family to Hidden Bluffs resort in the southeast corner of the state. We had a lot of fun and were able to experience a few things we had never done before. The resort was set in a wooded area packed with hiking trails and a creek for trout fishing. The kids and I had never been trout fishing before and found it to be fun, even though we didn't catch any big fish!

Landen did catch a few trout, very small in size but he thought it was fun all the same, his smile says it all!

Loaded up with bugspray and careful to stay away from Poison Ivy and other such weeds, we headed out for a hike on one of the hiking trails. 

Landen, Daddy and Olivia braving the frigid cold temps of the creek in search of a trout or two and some cool rocks. 

We stopped along this bridge to get a quick family photo on one of our hiking adventures and actually noticed quite a few good sized trout in the creek below, none that would bite on Landen and Daddy's worms however.

The kids also got to spend some fun times with their cousins on my side of the family which they thoroughly enjoyed as well. As I've stated before, it's never often enough that we see either of our family's so the times we do get to spend with them are precious. 
Emma, Matthew, Mason, Braelyn and Aunt Darci are enjoying an afternoon of pool time and Emma shows us her back flips. 

All the kids took part in a sand castle build-off to see who could build the biggest and best sand castle.

From there we extended our travels and were able to spend some time with Grandma and Grandpa Oltmans while daddy was on a work trip. The kids had a blast with all the activities that they were able to do, especially spending time with Grandma and Grandpa. Olivia was so sad to leave yesterday as I was packing up because she wanted to stay with Grandma and Grandpa, their kitties and Muffy. The kids got to spend an afternoon at the park with DQ treats and another day at an amusement park and a waterpark. They had a ton of fun, so much so that they were totally worn out at the end of each day. 



Landen had never tried a snowcone before so he enjoyed his first one courtesy of Grandma and Grandpa and of course he liked it, especially since it came in his very favorite color - blue. The kids also tried cotton candy for the first time too, but neither was too impressed by that, I'm sure it was a texture thing so I got to enjoy that treat!  

The kids also got to go on an amusement park ride and chose the boats. This was Olivia's first amusement park ride and she had a great time and is still talking about it days later. She was pretty proud driving that boat around and it was so funny to watch both kids turning the wheel so quickly as the boat went around and around like they were actually driving it. 

When I stop and think of all the little "firsts" the kids got to experience over the past week it makes me realize that although we do live a sheltered life most of the time, we in turn appreciate the little and big things alike, that much more. 

The perfect way to end a beautiful summer day spent outside was to go to the waterpark to cool down. The kids love coming here with Grandma and Grandpa and really enjoyed their visit again this time. You can tell that swimming lessons are paying off for both kids as they are both getting much braver and daring in the water. 

I'm hoping to fit in a few more memories to be made in the few weeks left before school starts back up for Landen. Olivia's next follow up CF appointment is right around the corner too, which of course always causes major anxiety around here. As always, I'm hoping for positive things and praying for an absolute miracle in terms of her weight. More on that of course after her appointment.



Tuesday, August 7, 2012

Monday Mayhem

Yesterday Landen had minor surgery to have a facial cyst removed. While the entire procedure went very well according to the doctor, it was still a very stressful and long morning for sure. Beings the hospital was an hour away from home and we had to be to there by 7:00 am, we had a very early start to our day and the kids were bound for crabbiness as a result which made the day a little bit more of a challenge. We also ended up taking Olivia along with us which added much more stress for everyone but I think Landen was actually happy that his little sister and best friend was there to offer him comfort, lots of laugh and support.

Landen in his hospital attire and still in good spirits. Seeing as blue is his ultimate favorite color, he thought the clothes were pretty cool.

Our nurse Mary Ann was super sweet and brought Landen "Dangles" the monkey which ended up being his surgery buddy. After she saw that Olivia was with us, she couldn't leave her out and insisted on finding her a buddy too, despite our insisting that she didn't need to. So Olivia got "Gumdrop" or as Landen refers to it "Gumball" and both Landen and her were thoroughly entertained with their buddies while waiting for surgery to begin. 

Landen was a trooper and did well with everything considering it was all so new and foreign to him. The surgery didn't take but 20-30 minutes but beings as neither Jeff nor I could be with him during that process and the first stage of his recovery, for a total of over an hour, it seemed like forever waiting for our little man to be brought back to us. Jeff was much more nervous than I was - he always is in situations like these and I know it is a result of his outpouring of love for the kids. I attribute some of my calmness to living through the beginning stages of CF; Olivia's 10 day hospital stay and her Infant PFT's. Visions of her only days old, in surgery, stripped away from us, on a breathing tube, the ventilator failing and the 3 infant pft's she had while under sedation all before 2 years of age kept replaying in my mind and in turn I wasn't too worried. I knew Landen would be fine and that he was in good hands so I do appreciate what I've been through in the past that allowed me to be strong for him. As he was coming out of sedation he was groggy for sure and he just wanted mom, and I'm thankful that they let me be back there with Olivia as she is still in the "attached to my hip" stage. So the three of us cuddled together on Landen's bed while Jeff sat at our feet as Landen recovered and we were all very happy about 1 hour later when the 4 of us walked out of there and the procedure was behind us. Landen's doctor said that he didn't notice anything abnormal about the cyst but that it would still be sent to the pathology lab with the results expected the end of this week.

This is the small incision left on Landen's cheek from surgery, thankfully it isn't near his dimple!

Landen enjoying his new Dino Lego set that we got for him for being such a trooper yesterday.  

Now that the surgery is done and over with and Landen is healing and doing fine we are looking forward to continuing on with our summer and enjoying all that is still in store for us.