The Epic Novel (Update)

How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?
~ Dr. Seuss

Exactly what I was thinking! Where has the time gone? No matter how much I remind myself to update our blog, I somehow find something else to do. I can always do it tomorrow seems to be the recurring daily theme.

A lot has happened since my last post so I’ll break it down in chapters with clever titles so you can skip around. Just be sure not to skip to the end and miss the good parts.

Back to Life, Back to Reality

February was mostly uneventful. We had a few minor issues, but nothing we couldn’t squash. Especially after January! Sutton had a minor issue with the rice cereal and digestion. Her little body wasn’t quite ready for the heartier food and she was spitting up a lot of what she was eating, only 3-4 hours later. A very small dose of an antibiotic with a side effect of digestive increase and we were back on track. I have never thought about using medicine for it’s side effects. I always thought side effects were something you looked at before taking a drug and decided if the good outweighed the bad. Now that I think about it, there are medicines out there that the primary use is for side effects and not the use they were developed for. I’m sure we will learn more about medicine than we ever thought.

Rollercoaster! Of Love….

Sutton may appear to be getting ready to for an amusement park ride, but she is in fact getting ready to leave the rice cereal in the past and move one step closer to normal. She had her follow up swallow study and received her first perfect score in testing. The follow up showed a perfect swallow with no aspiration and she was put back on her normal routine of liquid gold. Next stop, solid foods!

I want to ride my bicycle, I want to ride my bike!

As if we didn't have enough on our plate already, we joined the Executive Board for the CF Cycle for Life. No matter what, we will always have room for something that gets us closer to a cure for CF. We are excited about the opportunity to raise awareness and make this the best CF'n event in the country!

The CF Cycle for Life 2013 Kickoff was a success! We met with fellow board members and several other riders at One Midtown Kitchen to get this years event off to a great start. We met a lot of great new people and made many new friends. Team Sutton Grace received an award for best new team in fundraising efforts. It was great to have my co-captain, JV, there with me as we were recognized. We have high hopes of increasing our team size and fundraising efforts to new heights.

We have, yet again, experienced a welcoming by others involved in the CF community. While there, we made a realization that there are four types of connections that can tie you to the CF community. CF patients, Parents of CF, Relatives, Family members and close friends, and finally those who have no direct connection, but have been touched enough to get involved. No matter what part you play in this connection, when you are touched, you become a part of the big CF Family. Every person is just as important as the other, no matter what your connection. We are all in this to find a cure and make CF a memory.

I, want to rock and roll all night….

I know what you are thinking, …and party every day, or at least thats what it may seem like with all of the fun events! We promise that we have not been in a constant party mode for the last month, but rather take opportunities to have some fun while raising money and awareness for a cure.

We attended the ShamRockin For A Cure event at Verizon Amphitheater early this month. It was a lot of fun. Free food, free beer and a silent auction all for the fight. There were about 1000 people in attendance and we watched people open their hearts and wallets in an amazing way. Once again, we saw the CF Family in action and it was such a good feeling. If we have to be a part of something bad, why not make it great!

Don’t worry, be happy

Be Happy is the signals that Sutton is sending to us. No matter what happens in this little girls life, she is always happy. Many of us would be angry, annoyed and probably even tired at this point, but she constantly reminds us that we are doing this all for a reason. After all, she is the one who deals with the traumatic experiences of tubes, needles, wires, pills, masks, more pills, a dropper of this and that, not to mention we pat on her lungs twice a day for 20 minutes. As hard as it seems, if she can smile through it all, so can we.

We were joking the other day that every time I give a positive update on this blog, we hit a road bump. So I waited a little longer, thriving on the procrastination of having too much fun and pushing back the blog until tomorrow. Well, we figured out that we don’t have to worry about the blog post jinxing us.

Early this week, Sutton started to have signs of breathing issues again. From one night to the next morning, she worsened to a point of concern and we came to the ER at Egleston. After several hours and some breathing treatments, she seemed much better and we went home. Around 9:30pm that evening, she was much worse than originally so we came back. A few more breathing treatments and several hours of care, we were sent back home due to the hospital being full and there were no beds. The next day was off to a rough start and with the hospital being full, we decided to head to our pediatrician. They were able to provide the same care there that we were getting at the hospital and it was yet again, successful. Not to mention, we got to spend time with Aunt Brooke and that always makes it better. That afternoon, we were on our way to the CF clinic for our normal visit which couldn’t have been better timing. They assessed her there and felt it best to admit her to the hospital for treatment. We were placed on the waiting list for a bed and sent home. About an hour later we got the call that they had a bed and we were on our way after a few logistics at home.

Our visit in the hospital has been off to a rough start, mostly logistics with the hospital. First, we are not n 5 West but rather on a floor designated for Gastro issues. The nurses are nice, but they don’t seem to have the same understanding of CF and the feel is much colder. We have to explain a lot of things and they are much slower to respond. Just getting Creon so that she can eat takes a while and they aren’t sure what to do with it. CF parents and patients become pros as we do this daily so we just need to stand strong that we know how to do this and advocate for Sutton so that this stay doesn’t feel any longer than it will be. The bright side is that Sutton is happy and still getting the care she needs in the end.

We have had several tests and cultures so far and are still waiting on results. In the mean time, the doctors want to keep that proactive stance with CF treatment and Sutton will be on IV antibiotics and her normal treatments until results come back and we figure out next steps.

I promise to keep updates posted on the blog and not wait until tomorrow to post them. After all, tomorrow is a funny word. As long as you say tomorrow, nothing will happen today.