An update on our life & CF

Gavin is definitely a full blown kid these days, not an ounce of baby left in him it seems. He can easily hold a mini conversation with you, and I’ve long lost count of what words he knows, the words he doesn’t know would make a shorter list. Some of his favorite sayings…

“Watch cartoons pwease!”

“No Mama, noooooo vest!”

“Tank you very much!”

“Me pway hockey. He shoots….he scores!”

“Rice and beans. Me eat pwease!”

“I lub you”

“Me run fast!”

“C’mon”

“Me need kiss. Me have owie.”

“Aminal crackaws pwease!”

“Dat is me’s! No share!”

“Me drummin’!”

“Go to Gampa and Gwammas? See Daddy’s work?”
(both are very near each other)

“Me talk to Dada on phone”

“Me want fruit snacks! Now!”

 

He is about 50% interested in potty training, but I am not pushing it, for now as long as he’s excited about the potty I’m content. He is obsessed with Dora, Diego & Yo Gabba Gabba. One of those just might end up being the theme of his second birthday party, hard to believe that is just six weeks away! I know that the day of switching him out of his crib and converting it to a toddler bed is quickly approaching, but we’re going to stretch that out as long as possible. He has expressed interest in sleeping in Mom & Dad’s big bed, but I can’t figure out if he just wants to sleep with us, or likes the idea of an actual bed. Probably a combination of the two.

Gavin has been on and off Augmentin lately, I’ve discovered that getting a child with CF over a cold can be a lengthy process. If his current cough doesn’t go away in a day or two I am going to try and get him in at Mayo for a quick throat culture. Luckily, our team at the University of Minnesota has been open to the idea of using both clinics for such circumstances. We will continue to receive his primary care in the Twin Cities, but for a quick listen to the lungs and a culture we will hopefully be able to drive the five minutes to the clinic, much simpler!

I’ve also add vitamin C immune booster gummies to his daily rounds of meds, as well as some probiotics which will hopefully help out the nasty diapers (from the Augmentin). I have such a brave boy, he doesn’t complain about his long list of medications, he just takes them and moves on with his day….beyond amazing for a two year old.

 

We officially left the CF Pharmacy that runs out of Colorado. There were several occasions that his enzyme medications were delivered late (the last delivery was almost a WEEK late) and not one person that worked there seemed to be sympathetic to their repeated mistakes. His enzymes are a medication that he cannot do without, he has to take them with each meal in order for his body to absorb any of the nutrients. A half hearted sorry isn’t enough of an apology for me when it comes to my son’s health, and when I said I was leaving the manager not once said, “Is there anything we can do to change your mind?” I have a business degree and spent a couple of years as a manager (before Gavin) and doing what you need to do to retain a customer base is mgmt 101! The lack of customer service & management skills just made my decision to leave that much simpler. It was very disheartening as they are directly linked with the CFF. But I quickly discovered that the majority of my CF family has left them, their reputation is horrible. I know there are a couple of different CF pharmacies that have been fantastic to some of our friends, but Target has gone out of their way to help us with our extensive needs and we’ve switched everything over to them. The pharmacist instantly recognizes me when I show up, and anytime there is any issue with any of Gavin’s medications I receive a phone call. Interesting that a enormous national pharmacy can do that, while a small pharmacy who specializes in CF can’t…something is very wrong with that picture.

Other than that, we’re living life as normally as possible. We are most likely going to celebrate the arrival of the New Year at home in our pajamas. With Gavin dragging this cold along and me not wanting to worry about how we’d safely get home from a party…sweatpants, the Dick Clark countdown and a bottle of champagne sounds very appealing.

For us, 2010 was a much better year than 2009…we cannot wait to see what the New Year has in store for us!

Happy New Year!