Annual Pilgrimage to Ronald McDonald

Katelyn and Jake, our grandchildren from Oakley, came to stay for a few days this summer. We picked them up in Russell which is half way on a Thursday evening. Two of their cousins, Allie and Hannah who live here in town came also. Friday morning we headed out on our annual pilgrimage to the Ronald McDonald House in Wichita. In the past we have always gone to the one by Wesley Hospital so this year we decided to take them to the one by St Francis/Via Kristi. When Nick was born Cystic Fibrosis his mom and dad stayed at the one by Wesley because that is where he was for 3 weeks. Now when he is in the hospital he stays at Via Kristi. The lady there was very nice and showed us around and explained how they do things there. I think the kids have a better understanding of what the Ronald McDonald House is and how it is so helpful to those who use them. We delivered another 7 and 1/2 pounds of pull tabs so we are over 21 pounds now! Believe me that is a lot of pull tabs!! My co-workers here at ESSDACK have been very kind to help with the collecting of them along with our family.

After that we went to the Town West Mall and did a little shopping and while there Jake, Katelyn and Hannah tried some bungee jumping. They didn't jump off of anything, they only went up about 20-25 feet with harnesses, but they could turn somersaults, if they wanted. Hannah really liked doing that, she is six. They would have liked to do it longer of course....

The rest of Friday, Saturday and Sunday we had fun with water fights, going to the water park and play ground equipment at the Fair grounds. Making giant bubbles, painting finger nails, playing games, more water fights anything to try and stay COOL. I say try.....because it has been over a hundred degrees for weeks now. The day I wrote this it was suppose to get to 113!! : (

Sunday afternoon we took them back to Russell where they got a ride with their other grandparents who live in Oakley back home. I got the pictures developed and they are in the mail. Looking forward to next year!

Ronald McDonald Houses collect pop tabs instead of entire aluminum cans because it's more hygienic to store tabs than cans, and collection and storage is easier. The program is an easy way for people of all ages to support RMHC and know they are making a difference for families and children.

If your local Ronald McDonald House participates in the program, it’s likely cardboard collection containers in the shape of a house have been distributed to schools, community and civic groups and other organizations in your area. Collect pop tabs to drop off at one of these areas, or contact your local House about getting a collection container that you can be responsible for filling through one of your own groups.

Time for a Tune Up!

Our grandson, Nick, who has Cystic Fibrosis just called and said he was headed to St Francis/Via Christi hospital in Wichita for what the Cystic Fibrosis community call a tune up. They just need a time of IV meds under the watchful eye of a CF Doctor.

He has a new Dr since he turned 19 and now considered an adult! We are hopeful that this time in the hospital will help him to feel well. His lung function is down to 50%. He has been waiting for a room to open up and away from others who have respiratory illnesses.

His mother asked if maybe he could check into the hospital here but his Dr said she would rather he came there so she could keep an eye on him. She said she had been looking through his file and noticed he had been on the wrong antibiotic and that is why she felt he wasn't getting better. That is a good and a bad thing!! Good because it sounds like we have a Dr that is on top of things and bad because you don't know how much we have probably paid for some antibiotic that didn't work.

We are headed to Wichita to visit him this evening and he has requested some goodies, Twizzlers, Cheese Chex Mix, Peanuts, Sour Patch candy and of course DR. PEPPER!!!!! I work at ESSDACK an educational service center and they very kindly let us borrow a computer for him to use while in the hospital. They are so good about things like that.

Nick hates going to the hospital and starts working on the Dr to let him go home way before he should. He needs to have patience and let the meds work and just relax. Easier said then done! A good week there might make him feel like a new person!

If any of you that read this would like to encourage Nick his address at the hospital would be Nick Craig, Via Christi, 929 N St Francis, Rm 7043, Wichita KS 67214 or Nick Craig, 713 South Halstead, Hutchinson KS 67501 and Thank You Very Much!

Promising New Medication

Nick started a new medication called Cayston last week and was impressed with how it made him feel, he said he could really tell a difference.... "A GOOD" difference!! It also takes a lot less time to take then other breathing medications he is on. When you take so many and you can replace a 20 minute med for Cayston that takes under 5 that is great. That is the first time in a long time that he has been encouraged with medications.

What is Cayston®?

Cayston is a new inhaled antibiotic for the treatment of cystic fibrosis. It is the first new inhaled antibiotic developed for CF in more than a decade.It’s used to improve respiratory symptoms in people with CF who have Pseudomonas aeruginosa.Cayston is inhaled using a new device called the Altera® Nebulizer System. Using this system, the medicine is nebulized in less than five minutes.

What is Pseudomonas Aeruginosa?

About 60% of people with cystic fibrosis have a chronic respiratory infection caused by a bacteria called Pseudomonas aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas aeruginosa is hard to get rid of. Respiratory failure caused by the infection is often the ultimate cause of death in many people with CF.

How is Pseudomonas Aeruginosa Treated?

Years ago, chronic Pseudomonas aeruginosa infection in people with CF was treated rather unsuccessfully with oral antibiotics or inhaled injectable formulations of antibiotics. In the late 1990s an inhaled form of the antibiotic tobramycin, or TOBI®, was developed specifically for the treatment of chronic respiratory Pseudomonas aeruginosa infections. TOBI® is now the standard treatment for this infection, and is a commonly prescribed medication in people with cystic fibrosis.

Nick was taking TOBI and I think still does a long with several others.

What is Cystic Fibrosis?Learn more about Cystic Fibrosis Symptoms, Causes and PreventionLung-Symptoms.com/CysticFibrosis

Learning to Walk

Claire our youngest grandchild is 11 months old already and walking! We were at their house a few weeks ago and she was just taking a step or two, now she is walking the length of the living room. This week-end we decided to Skype them, something we haven't done very much since they moved back from Colorado. They still live four hours away, to far for just an evening. Four hours is a lot better then the twelve hours we use to drive when they lived in Montrose. Sunday evening we used Skype to visit and see everyone! Before we were done with our visit grandpa and I wanted to see Claire walk so they took the computer to one end of the living room and put Claire at the other end. I held out my hands to her and said "come to grandma" and here she came!! Technology is "AWESOME".

A few years ago when our son and his family lived in Montrose they couldn't come home to our house for Thanksgiving so we put Skype to use then too. When the rest of the family got to our house and we were ready to eat Thanksgiving dinner we set the computer on the hutch looking towards the table and they did the same. Who says you can't have a family dinner even when one of the families is 600 miles away and west of Monarch Pass on Thanksgiving! That was something to be very thankful for and we were. ; )

Nick our grandson with Cystic Fibrosis thinks he might be going into the hospital for what they call a tune up and I'll have to see if we can Skype him there too!

My co-worker Pam, had a good time with Skype on Sunday also! You might want to check it out.
fromthereceptionistdesk.blogspot.com/

A New Year, Old Challenges

A new day, a new year but the same old song and dance from Social Security about Nick's disability. He has had to prove he was born with a disability for 19 years and since he turned 18, a year ago, has to do it all over again. I guess they don't know that you will have Cystic Fibrosis until there is a cure. We would love nothing more then to have a cure and not worry about getting any SSI from the government. They have been turning his check of $226 back into Social Security because they (SS) told them if they didn't he may own money back to them. Lets see on one hand you have a healthy life and the hand holds a check for $226, which would you choose? Which would anybody in there right mind choose. Oh that is right we are dealing with someone in an office somewhere deciding if Nick has a disability when all they have to do is go to the internet and look up Cystic Fibrosis and there is your answer.

I wish so for a different life for Nick. Something that would give him some hope for the future. It is not only his disease but his education, the job market, the family of a mother, father and siblings he should have been able to grow up with. He has had a lot more thrown at him then most people know about. I sort of get upset when people are so set on the sex of a baby just pray for a healthy baby and don't worry about what sex it will be. Give them the best life you can give them with lots of love, a happy childhood and guidance for growing into an adult. He has never had the fun of growing up a care free child, he has always had more weight on his shoulders then a lot of adults have had to carry around. In the last few months there have been some caring people come into his life that should have been there a long time ago. Good people that if they had come into his life a few years ago Nick's life would have been so different. I pray it is not to late and they have the patience to see Nick through until he finally figures out what he needs to do.

I know there are a lot of grandmas out there who feel this way about their grandchildren and I would love to hear from them. My heart breaks for Nick and wish I could do more for him.

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!

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.

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.