Friday, June 27, 2014

June Update

Sorry this is a little late. Ken hijacked my computer and I just now reclaimed it!

The June appointment went really well. It was really fun too because Ken and Jack came this trip. We decided to make it a little family mini-vacation. We drove to Kansas City on Saturday and had all day Sunday to do what we wanted and then drove home Monday after Luke's appointment. It was a quick trip but really nice. The weather was good and not too hot so we enjoyed some outside time.

I will skip to the appointment first so those that don't want to hear about our weekend can stop reading! Luke only lost about 10 ounces! Not even a whole pound. I was pretty proud. The doctors were happy and we were cleared to continue for another month. We are currently in the process of weaning his appetite stimulation medicine. His last day was on Tuesday and this hasn't been a great week of eating. Even his teachers, who didn't know we were stopping, commented on how he hasn't been eating very well this week. We all have had a slight cold so please pray that his decreased eating is related to his runny nose and it will pick back up again. I really hope it is just his nose and this weekend we can get to start eating a bunch again. Thanks for all the prayers and keep them coming. Luke hasn't had a tube feed since June 2nd and that is amazing in my book.

ok...here is more from our weekend.

Saturday we drove to Kansas city. We got there and our room wasn't ready so we went for an early dinner. Ken chose a little restaurant that has trains that delivered the food. He thought the boys would really like it and they did. They thought it was very cool. After dinner we went to Cabela's and wandered around. It was a cool store and we got the boys life vests. After Cabela's we went back to the hotel, got our room settled, and went swimming. The boys had so much fun swimming and Jack even did some swimming by himself (with his life vest on)! Sunday we did Father's day brunch and then drove around downtown. We went to the Farmer's market and then to Union Station. It is beautiful. There is a train museum, a planetarium, shopping, and we even got to see some real trains. It was nap time, then dinnertime, and then we drove around some more. We went to a park and walked around the gardens and paths by the water. The boys loved being outside and running around. After that it was time to go back to the hotel and get ready for bed! We were worn out. The next morning we packed up, went to Luke's appointment, and then drove home. Even though it was a quick trip we jammed a lot in and had lots of fun.

boys taking a nap in the car


At the train restaurant


Ally was more interested in the french fries than the trains




Union Station

Planetarium

Watching the trains

At the park


The Kansas Star..one of the main reasons we were in Kansas City. They were the paper that wrote the article about the clinical trial and I saw that article on Facebook!