Witches and Dragons and a Princess Oh My

Well the grandchildren are back in school, the State Fair is just around the corner, Halloween decor is out in all the stores and that means it is almost time for my grandchildren to hit the closet to find out what they will be for Halloween. Last year in November a couple weeks after Halloween I happened to be in K-Mart when the rack of costumes went to 90% off. If you know me that is my kind of sale! That is the way I buy birthday and Christmas presents too most of the time. Well maybe more like 50 to 75% off but when I go in a store the first thing I look for is the sale sign. It is getting harder and harder to buy a season a head thou for the older grandchildren. Their likes and dislikes change more often. Back to the closet that holds a dragon, jack-o-lantern, Spiderman, knight, witch and several princess costumes, that were originally $40 to $15 (I can't even imagine spending $40 for a Halloween costume) and I got them for $4 to $1.50. For me that was a fun shopping trip you would have thought I won the lottery. Of course some of the costumes people make are very good but not everyone has the time it takes for that anymore. When Nick our oldest grandchild was about 3 or 4 I made him chaps and a vest and he was the cutest little cowboy another year he was a pirate and his little sister an angel. Then more grandchildren and a different job and the costumes I made kind of went away.

Actually I'm really not a big fan of Halloween! Years ago when I was young probably 4 or 5 my parents left my older brother and I with a babysitter and her older brothers thought it would be fun to put masks on and look in our windows to scare her. Well they accomplished that but also scared me and I can still see their faces looking in the windows.

It is fun for children to get dressed up and see if people recognize them or they can pretend to be someone out of a book or movie that they enjoyed. I guess the treats they get that one night that last for several months is a plus too! Nick is passed the dress-up stage but can still enjoy the candy that comes home with his sisters. He actually can eat all the high calorie things he wants because with Cystic Fibrosis you have a really hard time keeping weight on. Several of us wish we could give him some of our extra weight but we haven't come up with a plan for that yet. When that happens we really will have won the lottery!

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!!

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.

Adding Tomorrows for People with Cystic Fibrosis

Working together, we can continue to add tomorrows every day to the lives of all people with CF!

We were hoping 2009-2010 would be a better school year for Nick but that hasn,t happened. I’ve started this letter several times but the words don’t seem to come this year.
I want so bad to say that Nick has had a wonderful year and things seem to be turning around for him. I can’t! The last few months have found him in the hospital twice. The last time he got a port put in instead of a picc line. We are hoping that will work better for him and it can be left in for a couple of years instead of a few weeks. It was kind of scary for his mom learning and excepting the fact she would have to put the meds in through the port instead of a picc line. So far it seems to be going good. At least this will stop the scaring on his arms. Nick said “people probably think I’m a drug addict when they look at my arms.”
On the other hand we have heard promising news from the Cystic Fibrosis Foundation and the new meds that are in their second and third trials. When you listen to the CEO of the foundation, Dr. Robert J Beall, he gets so excited about the things coming down the line you can’t help but get excited too! Dr. Beall and Dr. Francis S Collins director of the National Institutes of Health and the co-discoverer of the CF gene, recently spoke to the US Senate about the lessons learned from the CF community’s successes in medical research that can map the way for other diseases. Dr. Collins also wrote a song about CF with the last line, “I want the story of CF to be history and you read about it in a book.” It takes money for research and we are asking help again to raise money for Cystic Fibrosis and for hope for the many kids and young adults with CF.
Last year we ask for you to send this on by letter, email and or facebook to anyone you thought might want to help. Some of you did and we appreciate that very much. The people you know value your opinion and if you think it is important enough to send on that will make them consider it. It is hard to ask for money even for someone you love so much.
It is the same as in the last couple of years if you want to give to the Cystic Fibrosis Foundation make your check out to Cystic Fibrosis Foundation and we will send it on to the Heart of America Chapter. If you want to give to Nick’s medical fund make your check out to First National Bank and in the memo space put Nick Craig Medical Fund. If you do it that way you can take it off your income tax as a donation. We appreciate anything and everything you do!
We thank you for your thoughts and prayers!! With your help, we can make CF stand for “Cure Found!!”

Nick and his family
Jennifer, Allie and Hannah
Dennis and Pat (2210 N Monroe, Hutchinson KS 67502)
Brad, Jacque, Katelyn, Jake and Claire
Matt, Joy, Abigail, and Daniel
Richard and Danny
Alex
Spencer, Melissa and family

Things that might interest you.
www.cff.org
Pat’s blog http://cysticfibrosisgrandma.blogspot.com/
http://mykidsturn.com/




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Summer and Cystic Fibrosis

Summer can be hard on kids with Cystic Fibrosis with the heat and humidity. The humidity makes it harder for them to breathe. When Nick was little the Dr. told us he needed central heat and air because when he goes room to room and the air is different his body has to adjust to each room. It is amazing how much I take for granted in my daily life with my health. I only need a minute to sit back and look around to find someone else (other then Nick) that has more challenges then I do. Life isn't fair but that is hard to say to people like Nick that feel like I have it pretty good and that is easy for me to say.

Nick was suppose to have a counseling appointment this week and I haven't yet asked him how it went. I'm not sure if I should ask at this point. I have thought for a lot of years he needs someone to talk to that is not in any other part of his life, to say whatever he wanted about anything and everything. As I've said before you need to walk in another persons' shoes before you judge what their choices are. I have to remind myself of that more often then not.

Nick is a good kid I don't want anyone to think different. Life has just been one tough thing after another for him. Life has changed in the last couple of months for the good I hope so things may turn around for him. You need positive things going on in your life or you tend to dwell on the negative things to much. I wish Nick could find a part time job to fill some of his time. I know that working at ESSDACK has been a big positive in my life. There are always fun, positive vibes going on there. ESSDACK is where the learning never stops!

My Kid's Turn

I wish My Kid's Turn would have been around a few years ago for Nick. I mentioned this site in my blog a couple of months ago. At ESSDACK (an educational service center) where I work they have put together about 80 videos with handy hints for teachers and parents, about different subjects, math, spelling, reading, art and many more that help teachers, parents and grandparents. His mother, grandpa and grandma could have used that to help him with his school work. Nick has always missed so much school, this would have been so helpful then, even now they just expect him to learn things on his own with no teacher. That might work for some kids but not everybody.
As a parent or grandparent you want the best for your kids. You want them to enjoy learning, and to succeed at school. You want them to grow up excited and engaged with their teachers. The good news is that helping your kids succeed in school isn't just something the teachers and schools have control over -- there's a lot you can do, too!
We have 5 younger grandchildren and you can be sure I will tell them all about My Kid's Turn so they can get the benefit of using this great resource.
Nick seems to be getting along better with the port then the picc line but he thinks he still needs sinsus surgery. We are getting ready to send out his Cystic Fibrosis letter and hope for a good year!

Time with Family

This was one of the best Mothers Days I've had in a long time! My son and his family came on Friday and stayed until Monday afternoon. Well Jacque, Katelyn and Claire stayed until Monday afternoon because Katelyn's third grade class from St Joseph school in Oakley traveled to the Cosmosphere on Monday. My daughter and her children came on Saturday for as long as they could be gone with Nick on his Port. Nick has to be hooked up 8 hours out of the day to get his meds through the Port and there is a break between 11:00 and 2:00. They were going to be at our house on Sunday for lunch but that didn't happen because of the nurse coming to take blood for checking levels. We had plenty of food so we delivered it out to their house. Nick says he is feeling better so hopefully that is the Port working for him. Saturday we also went over to see my mom and dad, they live within a few blocks of us. They hadn't seen Claire since she was born and I wanted to give mom her Mother's Day card.

Claire is our new grand daughter that was born in March. She is smiling and really wants to talk so every once in a while when her mom or dad talk to her she does do a little cooing. She is a very good baby! I know I'm grandma and I might be just a little partial to my grandchildren, that is our job, right?

Jake our son's boy graduated from kindergarten last week and took his field trip to the Garden City Zoo. On the way home they got caught by a big storm and had to stop a long side of the road not knowing if they should continue on the way home to Oakley, where the storm was headed or turn back to Scott City, they finally got the go ahead to go back to Scott City. Katelyn's class didn't know if they should start for home because of the storm approaching Hutchinson. For a while we thought the bus load of 3rd, 4th and 5th graders with their sponsors would be going to ESSDACK where I work to eat and wait for the storm to pass. After some discussion they decided to start for home instead. They all arrived home safely thank goodness.

Well lets see I have managed to get four out of the six in the blog today so I better go ahead and get Allie and Hannah in as well. Allie is a very good student and in the 5th grade, she goes to Haven grade school. She is on the bus at 7 am and doesn't get home until 4 pm, that makes for a long day. Hannah will be attending kindergarten this fall and she is so excited.