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.

Therapy on Hold

If you have read my blog before you know that working in my back yard is my therapy. This has been a very unusual summer with the extreme heat and no rain for weeks on end. We have had 100-110 with no rain for way to long. My flowers started off good in the spring and I am glad I took pictures of them so I could remember what they did look like. I say "did" because they no longer look like that, they are stressing and that is making me stress. Every day I go out to water and they look so sad it makes me sad. We usually would have had some coffee time or evening supper on the back patio often by now but even in the shade it is miserable. I don't know whether to put them out of their misery or keep hoping they will come out of it this fall for awhile! It is not only the heat and no rain but also the insects that are eating on the plants. I have tried to doctor them but I can't seem to come up with the right combination of things to help them.

I don't do any better in the heat then my plants in fact maybe I do worse. If I'm out in the heat to long my face will get red and white splotches on it and then I get nauseous!

When I was around nine years old we lived on a farm near Walker, Missouri and were out in the pasture when I decided to go to the house, for what, I don't remember. I probably had a 1/2 mile to go and I saw a snake! (I'm so terrified of them that it was hard just typing the word on this page) Well I ran the 1/2 mile in the heat and I get the splotches and nausea ever since. I think maybe I had a heat stroke or something.

Thank goodness I work inside in the cool of ESSDACK with COOL people!!

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!

Senior Adult Fellowship

Several years ago I felt the calling to volunteer to be one of the people to provide activities for the Senior Adult Fellowship in our church. I volunteered my husband also but he enjoys it as much as I do. I can't take credit for starting the Sunday evening time of food, fun and fellowship as we like to call it. Another man from our church started having them come for potluck and game night. They enjoyed that but the man had been in an accident a few years earlier and his health continued to deteriorate and was no longer able to continue. A year or so went by and my parents who were in the Senior Adult Fellowship had mentioned on occasion that they missed it. I started thinking about it and asked a couple of friends of ours if they would be interested in helping with it. They kindly said yes.

We got started with the 3 of us couples providing the main course and the others bringing salads and desserts. Mennonite women are known for their cooking at least that generation is and believe me they live up to that reputation.

We started just having game night but over the last 5-6 (lost count) years we have gone to wiener roasts at homes of the senior adults, cook outs with hayrides, several singing programs, movie nights and eating out together. One night they all brought baby pictures and tried to guess who everyone was. We have had nights of trivia that have been very interesting with people that are between the ages of 70 and 90.

They are so appreciative of anything and everything we do for and with them. We keep telling them we enjoy the evening as much as they do. We keep trying to come up with different things to do and keep them from getting bored so if you have anything that you think they would be interested in please let me know. We still have game nights with a variety of games or bingo with prizes that are all green for St Patties day or orange for Halloween etc.

Every Sunday evening when it is time to go home they come and say thank you! Many have told us that they hope there is someone to do this for us someday. Well that someday gets closer and closer to our age. You see the age for this group is 65 (I'm 64) to the oldest anybody can be and still come to enjoy the evening.

Coffee Time

My husband is sort of retired! What I mean by sort of ......is that he is his own boss now. Most of the time he comes and goes on his own schedule, keeping time for the most important things. He leaves the house every morning at 7 am "not to go to work" but to go to the local coffee shop! Need I say more......! Yes that is where we learn of all the things that are going on in this town and others. You wouldn't believe all the news he comes home with and a lot of it turns out to be true. There is a bigger group at the coffee shop but within that group is the "core group".

The "core group" has gone on many a field trip. They have gone to Greensburg after the tornado to the John Deere dealership open house, you can take the man off of the farm but not the farm out of the man. They have also gone to the Lowen Corporation, a powder coating place in town, Hutchinson water treatment facility, a furniture manufacturing place in Ness City, Maxwell Wildlife Refuge (on a very snowy day they sold buffalo), and a few others I can't think of right now. The point is...even if you still work you can start the day with coffee, laughter and step out of the box occasionally. Truth be known I'm a little jealous.

Being sort of retired also means he can donate of his time and he does. I'm proud of him for volunteering to help where he can.

So if you have some odd jobs that need doing you can call him and they will get done just don't expect him to be there between 7 and 8:30 am ;-)

Katelyn and the Eagles

Last Friday at work I got an email from my sister-in-law about the Eagles in Iowa. It was very interesting and fun to watch at times. This week-end we went to Oakley to our son's home. I was showing our grand-daughter, Katelyn, the live feed of the eagles she was very interested and watched on and off all week-end. After we got home from Oakley Sunday afternoon I was looking at the live feed myself and the daddy eagle flew into the nest with a bird he brought for a meal. The mommy eagle that had been on the nest got up to eat and then you could see the two eaglets that had hatched already. There is still one egg that looks cracked but has not hatched yet. I called Katelyn to see if she happened to be watching the eagles at the time but they had gone out to eat. When they got home she called me and was excited because both the parent eagles were there again. This time it looked like there was a fish in the nest with the bird and rabbit that had been meals earlier. There have also been times when we watched the mommy eagle feed the eaglets.

When the mommy eagle has set there as long as she wants she calls for her mate to replace her and if he doesn't come right away she goes looking for him. He then comes in and sits until her time out is over.

Katelyn emailed a link to her teacher and was anxious to talk to her teacher Monday to see if she saw the eagles, she was going to write about the eagles in school this week. Katelyn loves animals and I wouldn't be surprised if she would choose to be a vet someday.

The Raptor Resource Project is sponsoring a live feed of a nest in northeast Iowa where three eggs were laid in February. The first eagle started to emerge on Friday. The second hatched early Sunday morning and the third is expected anytime.

The Raptor Resource Project set up two cameras perched 80 feet high in a cottonwood tree where the mother eagle has her nest. The group says at such high resolution, viewers should be able to see cracks forming in the eggs before they hatch.

If you are interested in the live feed here is the link.
Decorah Eagles

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

The Dreaded Top Shelf

You might already know this about me but I'm of a short stature. : ( In my next life I want to be tall and be able to sing! I'm expecting both of those things because you always hear we are going to be extremely happy and there is no sadness! I always wanted to get to at least 5 ft, I think I only got there in my dreams. Now at 64 I'm afraid that I'm going back the other direction.

The other day I was at the grocery store (not one of my favorite places to be) and the only thing my husband asked for (you guessed it) was on the dreaded top shelf. Besides spending money at the grocery store that is the other reason for not liking to go there. I usually stand on the bottom shelf to reach the top one, never feeling very safe doing it, I always envision the whole shelf falling on me. Well I decided this time since the big cans of peaches were on the bottom shelf to use a couple of those. Of course before putting the cans on the floor and actually standing on them I looked both ways to make sure no one else was in the same aisle and then proceeded. It worked like a charm..... as I smiled to myself! : ) Now the next question is....the next time I go grocery shopping do I head for the canned peach aisle before starting my shopping so I have them with me whenever I need to get things off the top shelf or hope for the best.

When my grandchildren get about 10 years of age they all like to stand next to me and see if they are taller then I am. I always tell them that is not a great feat to be as tall as I am. I sincerely hope they get a lot taller then this grandma!

"Grandchildren's Artwork"

A couple of months ago my grandchildren in western Kansas sent me a link to Artsonia. Maybe you have already heard of Artsonia, a student art gallery K-12 showcasing art projects from around the world. When Katelyn and Jake have a new art project posted I get an email and then I can go to the website and see their art work! "IT IS SO...FUN!!! : ) You can also leave a message for them about their artwork. I started wondering if Allie and Hannah might have artwork too from another school district and did some checking...sure enough there they were!

For Valentines Day I copied a piece of their art and enlarged it, then used it as part of their Valentines card. I'm already thinking of other ways I can use their artwork.

"Artsonia" check it out maybe your grandchildren are there!

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.