Thursday, August 22, 2013

Welcome Back . . .

Welcome back mucomyst . . . even if it is only temporary. After not being able to get our hands on this nebulized medication for Olivia for over the past year because of the shortage issues, I was absolutely elated to have the not so pleasant scent of this med floating around our home again yesterday afternoon during Olivia's treatment. As the saying goes, "you don't know what you have until it's gone", it plays true in this scenario as well.

When Olivia started doing her treatments at 6 months of age, she was started on mucomyst and albuterol and has continued with this treatment plan until this day, falling back on albuterol and saline solution when we can't get mucomyst. I know there are still shortage issues with the drug but for the next month, we will thoroughly enjoy adding this med back into her routine. It doesn't have the most pleasant odor, and I know that my curtains and furniture have a continual lingering scent from it, but it works for her, it does it's job in helping to clear out that mucus so I wouldn't have it any other way. We've seen how her cough is with and without it and know that this is the med for her, at least for now.

In other news, we received Olivia's culture results from her August clinic appointment and she cultured heavy growth of staph, not great but not so bad either. She goes up and down with staph, culturing it sometimes, not others, sometime it's low, others moderate or high so certainly not water we haven't tread before and I know that staph holds nothing on some of the other bugs she could have show up so we'll take it. Since she is doing well and asymptomatic we won't treat it at this time so nothing new will be added to her daily regimen for now.

As the days of summer quickly fade, we are trying to hold on as tight to them as we can and make the most of the time we have left of summer. We just got back from a trip out to the Black Hills which was wonderful, and will require a separate post for another day and we have birthdays to celebrate over Labor Day as we officially send summer off and prepare for fall. We have a kindergartner this year so both Jeff and I are trying to wrap our heads around that yet and prepare everyone in our family for the changes that will bring. As our pharmacist continues to tell me week after week or month after month when I go in to pick up Olivia's meds and encounter never ending issues in doing so, "one thing is for certain, nothing stays the same, everything changes", he is correct indeed, nothing ever does stay the same, be it with medications, the insurance company or life in general, nothing does stay the same and we definitely have a big change this year with Landen being a full blown kindergartner. As scary as it all is, I couldn't be more proud and excited for Landen however as he makes this big transition in life. Not to mention the soon to be 4 year old we'll have as we forever say goodbye to the toddler years. Yes, changes happen every day, it keeps things interesting right?

Tuesday, August 13, 2013

August Clinic

Yesterday Olivia had a follow-up appointment at the CF clinic and surprisingly, (but also a little bit expected because I watch the scale like a hawk every week on Mondays for Olivia's weekly-weigh-in), it was her best appointment ever! Her BMI was the highest it has been, she had gained over 3 lbs during the past 3 months and grew over an inch. I knew she had gained at least 2+ lbs but I didn't think we'd actually be over 3 lbs come the doctor visit but by the grace of God, she did it and amazed us all! She is nothing short of amazing indeed.

We've all worked so hard over the past 3 months knowing that we had so much ground to make up from our February visit to get Olivia to gain weight. Even brother Landen, bless his little heart, sat at the table with us long after he had finished his meals and snacks, encouraging Olivia to eat, offering her "treats" and candy for dessert if she'd take one more bite, drink a bit more milk or finish her meal. He is the sweetest kid, I am so blessed to be his mom. Thus our appointment was quick and after everyone told Olivia how awesome she is doing, gave her a handful of princess stickers, told her to keep up the good work and to keep eating good, we left clinic on a positive note and with happy hearts, which is about a first.

Over the past 3 months, we more or less let Olivia choose what and when she wanted to eat. If she was hungry, even mere minutes after just finishing a meal, we'd sit down and eat again. I don't know if it was prayers being answered, allowing Olivia to make more of the decisions, the fact that we are ending the toddler phase, or a combination of all three, but whatever it is, it worked and we couldn't be more happy. So at least for now, there is no talk of a g-tube, which we know all too well that if things go south it'll be brought up again, so for now we relish in the joy of how well Olivia is thriving. Since Olivia gained so much weight and Landen was instrumental in encouraging her, they wanted to pick out a treat for our taco party to celebrate. Collectively, they chose cupcakes for our celebration, and knowing why we were eating them, I'm pretty sure made them taste that much better! Now we wait nervously for her culture results and pray they come back okay, we should find out more next week. We also must continue to work our tails off to keep Olivia eating well and gaining weight, that battle never ends, so as we take a breather after the success of the past 3 months, today and every other day, we keep fighting to keep her weight up.

As summer is quickly coming to an end, we must make the most of it. Olivia could live outside if we'd let her. She loves riding her bike and swinging on the swing set, I have no idea what we will do when winter hits and we are stuck inside for such a long period of time . . . Thankfully, we have a few more weeks left of summer bliss.