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!