Tuesday, August 11, 2015

1D Concert & CF Annual Studies/Dr. Appt

Five years ago, the mere thought of taking Olivia into a place where 40,000 other people resided, none-the-less, a hot, sweaty mass of people, standing shoulder to shoulder . . . the thought would have made me cringe and hands down would have warranted a 'never going to happen' response. . . I'm glad things have changed!

On Sunday, July 26th, I did just that. Olivia and I, along with my sister and niece, ventured down to TCF Bank Stadium, on a hot and humid evening for the much anticipated One Direction, On The Road Again tour concert. Yes, we were amidst the crown of more than 40,000 other screaming fans, most of which were teen girls, and I didn't even cringe.

Braelyn & Olivia decked out in support of 1D, ready to head into the stadium.

They even had "1D & Harry" nails! Brother Landen gifted these to Olivia for Christmas.

On the way into the stadium, we walked past a few different caravans of tour buses. Olivia thought it pretty neat that Harry could have been inside one of them. The thought of seeing Harry in real life, not just on youtube, the internet, tv or hearing him on the radio - was pretty darn exciting!

Thankfully, TCF is an outdoor stadium, so that made the massive crowd less of a worry, but honestly the joy, excitement and anticipation of this concert, Olivia's very 1st concert, for her most favorite band, and the joy in experiencing it with her, was so worth it. It was definitely a day and memory that will last a lifetime. All truth be told, I think I had just as much, if not more fun that she did. After all, I'm a 1D fan too and my favorite song is "What Makes You Beautiful". The 1D boys are a great group with some really great songs, most of which I know by heart, especially having listened to them over and over and over again, in the many months leading up to the concert.


As previously eluded to, it was so darn hot that evening. Olivia had to forego her 1D t-shirt once we were in the stadium with the hot sun beating down on us. But she did keep on her necklace, 1D watch, bracelet and the new bandanna she got as a souvenir.


Thanks to Grandma Pam, who went on a quest to help us find someone who could get us early Citibank member tickets and her friend and co-worker Joan, we had some really awesome seats! We were only 15 rows off the floor, so we could see the performance well and Olivia was in aw when she saw her very favorite lad, Harry Styles, strolling back and forth; up and down the catwalk. Thanks Joan for helping us score great tickets!

As much as kid's tastes in everything change so quickly, Olivia's love for the 1D boys has been on-going since before Christmas. Her Christmas gifts included One Direction dolls, bedding, t-shirts, nightgowns, jewelry, accessories, etc. etc. So the fact that she's loved  them for so long and still does, made the concert that much more special. As soon as I found out the boys were coming to Minneapolis to perform, I knew we had to get tickets to go.

It was such a great experience, I was a bit sad when the concert was over as Olivia and I had been talking about it and looking forward to the day for so long. I'm so glad we got to experience it. I know Olivia really enjoyed it as come Monday morning, the day after the concert, she woke up singing 1D songs and asked me, "Mom, when can we go to the concert again?" I smiled and said, "Well if 1D ever comes back to Minnesota, we'll go again." She was satisfied with that and continues to listen to 1D songs on her tablet, sing them out whenever and wherever, and parade around with her 1D jewelry and gear from the concert. A great memory indeed.

On that note . . .

1 year to the day of Olivia's g-tube surgery, on August 4th, we ventured down to the U of M for Olivia's CF follow-up appointment, annual studies, yearly chest x-ray, PFT's and glucose tolerance test. We started the day of appointments off at 7:30 with our last being at 1:30. It was a long day but nice to knock everything out in 1 very long and tiring day.

We began at the Journey Clinic with Olivia's annual glucose tolerance test. She was so worried and nervous about the needle for the blood draw and many times I reminded her that they use numbing cream so it wouldn't hurt. I also told her that compared to 1 year ago on this day having the g-tube placed, this would be a piece of cake! She was nervous and scared but once she realized it was true, that she wouldn't feel the needle because of the numbing cream, things were much smoother sailing.

Glucose Tolerance Test

For the glucose test, Olivia didn't want to drink the sugar drink so we were able to utilize her g-tube for this, pumping it in very quickly to begin the test. Blood was drawn every 1/2 hour and they did a total of 6 blood draws, filling so many vials of blood each time. Because they were not only checking her glucose but also every possible thing one can gather from blood for her annual lab work, she had so many vials taken, it was amazing she could function at all really, having been fasting since 10:00 pm the previous evening. Upon completion of the test she did drink and eat a good amount for breakfast to get something back in her which was a requirement before we were allowed to leave. 

Next up we grabbed some lunch and headed into clinic for Olivia's PFT's. She's getting better but it's still a work in progress until we will get accurate data. She needs to work on taking in a really deep breath and then blowing out long and slow for as long as she can, followed by one more big breath in. The PFT tech did her best to instruct her and we were given ideas to practice for her next round of PFT's in 3 months at home to hopefully produce a more accurate reading of Olivia's lung function. All in all though, she did good and was happy to be blowing the rooster across the screen and the candles out on the birthday cake. 

Right after PFT's we headed into clinic for our visit with our CF team. We met with our nurse practitioner who was very pleased with Olivia's status; happy that she is tolerating her nightly feeds more with the method we've been using and that she's been healthy and is growing. Olivia's BMI is currently in the 60th percentile so no changes are necessary for now. One year ago, her BMI was in the 28th percentile so the g-tube is helping, despite the rocky road we've traveled with her tolerance of the feeds and emotional adjustment to it.

We also visited briefly with our dietitian, respiratory therapist and social worker. We talked over procedures and processes that will pertain to Olivia entering kindergarten. We discussed upping the settings of her vest therapy to higher frequencies and pressures to get to the "Minnesota Vest Protocol". Each week I will increase 1 step until we are at the goal levels for her vest treatments. She was currently doing frequencies of 13, 12, 11, 10, 9 & 8 all at a pressure of 6. We are to work our way up so we get to frequencies of 20, 19 & 18 at pressures of 6 and 8, 9, 10 at pressures of 10. So far, so good, she's tolerating the increases with no complaints. We know the more effective the vest treatments are, the better her lungs - so this is a good thing.

Her blood work from the annual studies looked good and was pretty much all within normal range. Her glucose tolerance test reported that she does NOT have CF related diabetes at this time, thank the Lord for that, and her sputum culture was normal flora and the "always present for Olivia", staph aureus. Thus we are very happy with how Olivia is doing and with the results from her latest studies and appointment.

Next up is kindergarten, to that I do cringe. I'm happy for Olivia to get to venture out on this new journey but saddened to think that no kids will be at home with me during the day now, how crazy fast the time has gone! I'm anticipating a rough and rocky road as Olivia adjusts to life outside of home and away from mom. I'm sure it won't be easy at first but I do believe in time she will love it, make friends and thrive, getting to that point may prove to be hard.

For now though, we still have a little less than a month of summer left so for now, we are going to enjoy it and worry about the upcoming school year on a later date!