Monday, August 23, 2010

Fourteen Pounds and Counting

Three of our six grandchildren came to stay for a few days before school got into swing for the new year. Jake a first grader, Katelyn a third grader and Hannah a kindergartner. Katelyn and Jake can't wait for school to start another year they have been counting the days! Hannah is excited about starting her first year of school. When Hannah's mom took her to enroll she told everyone this was the best day of her life! It is a great feeling when your children or grandchildren are so anxious to go to school.

One of the things grandpa and I wanted to do while they were here was to take the pull tabs that we have collected over the last few months to one of the Ronald McDonald houses in Wichita. When I say we I mean our family, extended family and my work family. I work at ESSDACK , an educational service center, in Hutchinson, KS and some of the people there help collect tabs for us. I have mentioned before about the jar we have in the kitchen at work and sometimes some of my co-workers bring me a "bag of tabs." I know this is an extra step for some of them but they are awesome for taking the time and we appreciate it. Our first trip was back in December and we said at the time we wanted to bring the grandkids the next time if possible. We usually take them to Sleepy Hollow close to Wesley hospital in Wichita but next time I think we will take them to the one close to Via Christi which is where Nick stays in the hospital when in Wichita. Nick is sometimes in the hospital because of Cystic Fibrosis but Via Christi is also where Nick goes for the Cystic Fibrosis clinic. We took their picture outside on the porch with Ronald and then took the tabs inside. We took 7 pounds in December and we took another 7 pounds this time so we are 14 pounds and counting! They could see some of the families that the tabs will help and we talked about it in the car afterward. I want my grandchildren to realize one of the best things you can do in life is to help people. There are always people that need help whether it be just spending some time with someone who is lonely or taking pull tabs to Ronald's house, or donating in some other way, there are lots of ways to give back.

Another way my co-workers give back is by taping segments of My Kids Turn. If you are like me you need a little help when it comes to homework or just extra fun things that help your children or grandchildren with their school work. They are taping new segments all the time. I haven't had time to look at all of them but the ones I have seen make learning fun!!

Monday, August 9, 2010

Thank You!

"Thank you to those of you who gave to Cystic Fibrosis and or Nick's medical fund!" I also want to thank anyone who sent the blog on to someone else, it helps raise awareness of Cystic Fibrosis. If you haven't been on this side of a disease you don't know how much your caring means to us. You really do touch our hearts!

We had the Great Strides Walk here in Hutchinson for Cystic Fibrosis for several years, when that dissolved we started going to the walk in Wichita. We haven't gone there in a few years but still collect what we can and send on to the CF Heart of America Chapter in Kansas City. Last week I ran into one of the mothers we met through the Cystic Fibrosis walk we had here in Hutchinson. She asked about Nick and I asked about her son with CF. Her son is 13 and going through a lot of the same things Nick went through at that age and still continues with some of them. He has a feeding tube which Nick doesn't have but was threatened with several times because of weight. If you don't know about CF you probably don't know that they have a very hard time keeping weight on because food runs right through them. Many people don't realize that it isn't just a disease of the lungs but also the digestive system. The pancreas is very much involved in the digestion so they usually get diabetes on top of everything else. We are thankful that Nick hasn't developed that yet. They take enzymes to help with digestion. Nick takes 7-8 capsules (enzymes) every time he eats meals or snacks to help with his digestion. He probably takes 15 or more medications in a day besides his breathing treatments and percussion.

There isn't a support group here in Hutchinson Kansas for people affected with Cystic Fibrosis but it would be beneficial if there were. I think the families could lean on each other and the knowledge that could be shared would be awesome. Sometimes it feels like you're going through this alone, the children, the mothers, the fathers, the siblings and yes the grandparents.