"Seventy Years"

This last week end was my parents 70th wedding anniversary! Yes that is right 70th!! The actual anniversary is not until the 15th of December but that is to close to Christmas to get us all together two times that close together. We had been anticipating this week end for 6 months and now it is already history. I think everyone had a great time. There were 44 of the 59 of us able to attend or maybe I should say 58 and counting, # 59 will be here in about 5 weeks. Jeff, my nephew and his girlfriend came from as far away as Maryland and our son and his family live in Oakley, Kansas which is where the celebration and or reunion took place.

A small group played golf Saturday morning with a much larger group of 21 playing in the afternoon. The youngest was my grandson at 7 and the oldest was my dad at 89. Several of the women and girls went to a Girls Day Out at the fairgrounds!! Jewelry, purses, candles, food and lots of other things that light up our lives were there for us to look and "buy"! In the afternoon we had swimmers, golfers and a trip to the park, the weather was beautiful. In the evening we had a pizza party and played Family Feud the 1960 version! Most of the great grandchildren didn't know the answers and sort of looked at us funny. Needless to say there was lots of laughing. At 11:00 pm there sat my mom of 87 playing cards with 3 of her granddaughters. Sunday morning after breakfast we checked out of the motel and went to the St Joseph gym to continue the laughs playing Minute to Win It (this was summer tv show) if you go on line you can see the different games they played for money. My youngest brother had about 20 different activities you could try and do within a minute. We didn't actually compete but we got to try as many and as often as we wanted to. Everyone from 3 to 89 was involved in the fun. Everything from stacking 3 golf balls (which my dad did) to bouncing 3 ping pong balls into glasses of water to make tic tac toe or balancing 12 pencils on the back of your hand then catching with the same hand to keeping 3 balloons in the air for 60 seconds which is harder then you would think.

After enjoying a wonderful meal there together we took the family picture and all headed in different directions home. There were lots of pictures taken all weekend with lots of different cameras so it will be fun to see them at Christmas when most of us will get together again!

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.

Hospital Time

Nick is back in the hospital for the second time in 2 months. He really needs sinus surgery but for some reason the sinus DR doesn't want to do surgery at this time. I don't think he has felt good for over 2 years. I read in a book once when a child with Cystic Fibrosis breathes it is like someone was sitting on their chest. They have to work that much harder to breathe then we do. To many of us take life for granted, if you have your health you are already a head of the game. Nick had a port put in this morning and we hope it will do a better job then a pic line. It will stay in for a couple of years instead of just a six to eight week period. He has so many scars on his arms from the pic lines he said people probably think he is a drug addict. The port goes in under the collar bone and near the lung. He will get meds through the port for 3 weeks. His mom said it takes about 8 hours to go through all the meds and that doesn't include his breathing and percussion treatments. Nick will be pretty much home bound except for very short periods of time for 3 weeks.

Intravenous (IV) medication administration refers to the process of giving medication directly into a patient's vein. The primary purpose of giving IV medications is to initiate a rapid systemic response to medication. It is one of the fastest ways to deliver medication. The drug is immediately available to the body. It is easier to control the actual amount of drug delivered to the body by using the IV method and it is also easier to maintain drug levels in the blood for therapeutic response.

I just want him to feel as good as possible!

Angels Among Us

I just read one of my co-workers here at ESSDACK latest blog http://iswearitstrue.com/ and it reminded me of a time we had a tire blow out on I-70. We left early one morning to get Nick to Childrens Mercy in Kansas City for sinus surgery and tonsil removal. Just out of Emporia I was passing a semi at 70 miles an hour, another semi right behind me and the tire blew. Well our guardian angel was looking out for us because this grandma remained as calm as she has ever been and pulled to the left because there was no where else to go. After the traffic had passed us by we moved to the right side of the interstate, breathed a sigh of relieve and collected ourselves. Our first thought, "THANK YOU GOD WE ARE STILL A LIVE AND WELL". Second thought was how were we going to get Nick to his surgery third was how were two women and two small children going to change the tire and get Nick to his appointment on time. Fourth thought "THANK YOU GOD WE ARE STILL A LIVE AND WELL"!!! Thank goodness for cell phones because we called grandpa and he called Cooper Tire in Emporia. I should say thank goodness for cell phones, heavenly angels and earthy angels. By earthly angels I mean grandpa with his quick thinking, Cooper Tire for sending two very nice men to quickly change the tire and we were on our way. We made it to Childrens Mercy on time! I always thought we would do something for Cooper Tire when going through Emporia for more of Nick's Cystic Fibrosis appointments but lots of appointments and years later we haven't. Heavenly angels I KNOW we have them "WE ARE A LIVE AND WELL" to prove it! Nick is now on his 10th or so sinus surgery and is getting ready for another one which is something that comes along with CF.

Therapy Begins

Spring is finally here and that means cleaning out flower beds and pots, trimming off the old dead foliage before the new sets on. I "LOVE" this time of year because it seems to be therapy for me and gives me a new lease on life. Give me a hand spade some plants or seeds and turn me loose! Even the crabby elderly backyard neighbor can't get me down, at least not until he starts trimming MY vines off of MY fence which he has HIS roses growing on (well that is another story). The redbirds, finches, wrens and even the sparrows give way with song while I work. Work did I say work I meant while I'm doing therapy. We have a small yard so it doesn't take long before it starts to take shape. I usually don't like to start planting bedding plants until the first of May. I'm afraid it will frost and kill them but with 80 degrees it is making it hard to wait. I like spring-a-rye baskets hanging from the patio roof, silver lace vine on the fence, geraniums, alyssum, lime green sweet potato vine in the window boxes. Zinnias, black eyed susan, bunny grass, lilies and hosta in the flower beds. I tend to use pinks, lavenders, purple, yellow and white. I like to use old chairs, old metal wash tubs, watering cans and a wooden wheel barrow that Dennis's dad made for us, for containers. I like bird houses, bird baths, fountains, and old wagons. On my patio is an old buffet painted white with a small table and chairs. Above the buffet is a candle chandelier and a picture painted on an old screen. There are a couple of rocking chairs, for guess who, and a big pot of impatience. Are you starting to feel my therapy yet? If not...to each his own.

Now I don't like hot weather and it gets "HOT" here in Kansas. You will only find me out doing therapy in the early morning or later in the evening. The time goes by so quickly I might be out there for hours before I realize it. It is sort of like some people I work with at ESSDACK that can be on the computer for hours on end when they are at home. I don't get that but...to each his own!

Heart Prints

A few years back well nine to be exact one of my co-workers at ESSDACK, Lori suggested we do a cookbook to raise money for Cystic Fibrosis. A lot of the women in the office put their recipes in a computer database that Lori set up. Then she compiled them together into categories of main dishes, salads etc. We copied and sold enough of them to give the Cystic Fibrosis Foundation $1000 after our expenses. It was a great idea and everyone I know that has the cookbook says they use it a lot. I saved one for Nick so he can have one some day when he is on his own. He likes to cook and change up a recipe from time to time. Anyone who offers to help raise money for CF or is kind enough to donate to Nick's medical fund leaves heart prints on my life. It is a very hard thing to ask for money even when it is for someone you love very much. I guess you have to be in my shoes to realize the importance of not only the support financially but the support emotionally. Because we have been on the other side, the side of receiving it is so hard to say no to others asking for help and I would rather not. I guess we don't look at it as a donation but rather a gift of help. We have to say no sometimes, we've found you can't give to everything. We have a good friend with MS and we used to teach a Sunday School class for the the mentally challenged so the Special Olympics along with Multiple Sclerosis have a special place in our hearts.

Everybody has their own special place that they like to give, I just want you to know you have left heart prints on those who will benefit from your gift.

Now There are Six!

Nick is our first grandchild but as of Monday the 22nd we have six! Claire Janelle was born on Monday of this week making a grand total of 4 girls and 2 boys. They range in age from 4 days to 18 years. Nick 18, Allie 12, Katelyn 9, Jake 6, Hannah 5 and now Claire 4 days. It has been a journey and you know journeys they take lots of twists and turns but that is what makes them interesting, fun and challenging! Each grandchild brings their own personality into the mix. I can't wait to see how Claire will fit into the puzzle. Right now she seems to be very content only needing her mother, father, sister, brother and other family members to love and nurture her. It really is an amazing time in my life! Children, grandchildren, husband of 44 years life wouldn't be the same without them.

I work at ESSDACK an educational service center in Kansas. Our office has 32 people, about half of them are grandparents and 10 of us have or will have new grandchildren in a years time, we all know that education is important for them. In the last year our specialists and technology team have come up with a lot of new ways to reach and teach education to our children and grandchildren. I work with some very talented people and hope that you get to experience their talent. I know that my grandchildren will benefit from their knowledge and hope that yours do too! Among some of their projects are My Kids Turn, Bullying, Art Snacks, Math Snacks, Tammy Worcester's computer books for teachers, to mention a few. To find out more go to www.essdack.org.

Our First Grandchild

Being the grandparent of a child with Cystic Fibrosis or another chronic illness is not a place I ever thought about being before Nick came into our lives. But into our lives he came (our first grandchild) with these big brown eyes and tiny little body. Nick came early weighing in under 5lbs. The doctor noticed the first day that Nick had a problem with his bowels. Second day found us at Wesley in Wichita with Nick in surgery, we thought to repair his bowel. When the doctor came out of surgery he was very blunt and with a cold bed side manner told us he might live to 21. When the Cystic Fibrosis Foundation was founded in 1955, few children with CF lived to attend elementary school. Nick is now 18 and the Cystic Fibrosis Foundation has made "Great Strides" in their research and the media age for an individual with CF is now 37, for us that is awesome! We have been hearing of meds that may make that number even bigger!

"Great Strides" is the name of the walk that Cystic Fibrosis has every year to raise money for research to find new meds and treatment for the disease. The one for the Wichita area is coming up May 1, at Sedgwick County Park, 9:00 am.

We still raise money for the Cystic Fibrosis Foundation every year but we have not attended the walk in the last couple of years because Nick would rather not go. You see there are usually teams there raising money for a loved one who has passed on and their t-shirts say in memory of. I understand why they would want to do that but to a young person living with that thought is hard enough without seeing it on shirts. I am hoping with time he will feel like returning to the walk but I'm not walking in his shoes, only mine.

Ronald McDonald House

In the past we have used the Ronald McDonald House in Wichita and Kansas City because of our grandson Nick. He has Cystic Fibrosis which is a genetic disease affecting approximately 30,000 children and adults in the United States. Cystic Fibrosis (CF) causes the body to produce an abnormally thick, sticky mucus, which clogs the airways and leads to life-threatening lung infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to break down and digest food.

The Ronald McDonald House is a wonderful place for people with a lot on their plate already with diagnosis and treatment to rest in a homelike atmosphere but close to the hospital where their love ones are.

I ask my ESSDACK co-workers this last fall if they would help me collect pop tabs for the Ronald McDonald House. They very graciously said "yes." Grandpa and I dropped off 7 lbs. (which is more then it sounds like) around Christmas and they were very appreciative. We keep a glass jar in the kitchen at work and one at home. It is a very simple thing you can do that will help a lot of weary people. This grandma thinks that helping people through the good and bad times in life is after all what life is all about!