Saturday, April 30, 2011

Great Strides 2011

Perfect day for a walk!

Pete kept the boys entertained while we got everyone registered.

The walk started at the Yacht club.

The boys had fun on the rocks.

I kept warm inside.

They had muffins and milk and juice for the walkers.

It was really windy but it was a good crowd!

Our team name was "Hike for Mike"

Here are a few of our team members. My friends, Mike and Dianne came and Missy and Mike and Katie and Missy's friend. We all hung out inside out of the wind until the 5K walk started.

Everyone who raised $100 or more received a CF Great Strides T-shirt.

This was our entire team - many others were with us in spirit!

This touched my heart. You know, sometimes I don't take time to sit down and explain things to David. Partially, because I understand that things can happen and plans can change at a moments notice. I hold back so that if we have to change plans he doesn't have dashed expectations. So I only told David about the walk two days ago. I told him we were going to walk to help Mike. He didn't say much and today as we got ready I told him this is the day we would walk to help his brother. He asked where etc., and as I answered I added that we were raising money to help Mike with his CF. He came up to me a bit later and asked, "Mom, why do we drop money?

I said, "David, we aren't going to drop money we are going to raise money. People are going to give money to help Mike fight CF so he doesn't get so sick." David went over to his box of money he has been collecting and grabbed the two dollar bills he had. After further thought he put one of the bills back and grabbed some coins. He asked me if he could give his dollars to raise money. I said sure and didn't think much more of it. After dropping the coins several times I asked him to put his money in his pocket and keep it there. He obeyed. While standing together at the Yacht club suddenly David walked up to Mike and said, "Here Mike, here is some money for you!" In his hand was the dollar and coins and he was cheerfully handing them over to help his brother. It was so sweet. He doesn't totally understand but his heart is in the right place. My heart took a picture of that moment. His generosity and the generosity of so many others helped our team raise $1000. We are so grateful for your support.

David decided he was too tired to walk. He got a ride from Pete.

Mike figured if it worked for David . . .

It was a great day filled with memories. Memories for my kids of coming together to show our support for Mike. Thank you all for making this possible. Thanks for being a part of our memories. God bless you!

Thursday, April 28, 2011

Touched beyond words . . .

I am once again humbled and touched by the caring and giving hearts of others. I have been receiving emails, letters, encouraging words and donations from so many of you wonderful people. My deepest heartfelt gratitude.

When people reach out to those less fortunate it is something to be recognized. We are all so busy with our lives. So much to do, so little time. There are so many worthy causes deserving of your time and attention. The fact that others would chose to help us is humbling and encouraging. We are truly blessed. Thank you from all of us. The boys are so excited to be able to help makes GREAT STRIDES to help their brother and others with CF. We have two little neighbor girls (right next door) who have CF. It is my prayer that they will never have to know CF like we do. That they will never have to endure long stays in the hospital away from family and friends. We pray that this money raised will help researchers continue to make tomorrows for people with CF brighter,and healthier. Thank you, thank you, thank you.

Mike Update:
Mike has been having trouble with coughing up blood again. He went out with Scott for Scott's birthday and started coughing and coughed up a lot of blood. Scott wanted to take him to the hospital. Mike said no he would call the clinic on Monday. It happened two nights in a row but only lasted for about 45 minutes each time. This could be his reaction to the Tobi he is doing. He does Tobi 30 days on 30 days off. He is on right now. Some of you might be thinking - well, why doesn't he just stop using it. I wish it were that easy. This medicine is helping but it could be damaging his lungs some also. I wish we had more drugs. That is the reason we fund raise.

Mike is getting worn out. He is tired. Could be time to go back in the hospital soon. He is going to try and come to the Great Strides walk. Last week he was out on his motorcycle. Ups and downs. He lives life to the fullest.

This young man had a recital a few weeks ago. Next Saturday he will play in front of judges. Such exciting stuff. Last year he got a first. He works hard at his piano lessons.

Can't believe he is eleven already.

This little boy brings so much joy. I love that when I interact with him I remember times with Mike and Richard and Katie that were similar. Living and reminiscing these times are a treasure. I thought I would share our interchange from the other day. I laughed so hard (of course, not in front of him) and then laughed even harder as I told the story to friends. Hope this gives you a smile :)

After giving David a shower I took him in his room and pulled a pair of undies from his undie drawer. As I was putting them on him I stopped and took a closer look.
"David, are these undies dirty!?" I said a little shocked.
"Yes," David replied very matter of factly, "And there are dirty socks in the sock drawer!" he added almost triumphantly, seemingly proud of the fact that he had gotten them into the right drawers apparently all by himself.
"David, why are you putting dirty undies and socks in with the clean ones in your drawers!" I snapped back in a stern tone.
"Well," starting in a somewhat whiney, pleading voice, realizing that maybe he could be in trouble here, "Dad, said I had to clean my WHOLE room!" he responded in his defense.
"WEEELLLL, we don't put dirty clothes in with the clean clothes. We put them in the laundry room!" I retorted sharply.
And in the most innocent, pleading tone he responded, "But Mom, that would be too HARD!"

So in David's 5-year-old world, whatever is easier is right. gsshhh that kid cracks me up.

My little monster is learning to read. He is a smartie. Learning to multiply too! Love this little monster!!

David has been home sick yesterday and today. Fever got as high as 103 last night. Praying he will be able to go on the walk tomrrow. Say a prayer for him! (We know you all pray for us... we appreciate it!!)

Blessings to all of you! Back with more after the walk!!

Sunday, April 24, 2011

Our Easter Miracle

Happy Easter Everyone!!

He is risen! He is risen indeed!

Blessings to you as you celebrate the victory of our salvation!

Mike update:
Mike's last checkup was extraordinary. He weighed in at 142 lbs. which was the best he has ever had in the hospital or clinic. The nutritionists and doctors were impressed. Keep doing whatever you are doing they encouraged him. Then came PFTs. Mike blew a 56%! Yes, you saw that right 56!! We never thought we'd see those numbers again. After Mike blew it the first time he said, "Well if that's right I'm going home and having champagne tonight!" It was right. I could have cried. Dr. D came in and asked him what was going on. He looked at his PFTs over the last few years. You could see the slow steady decline. Then in September they just dropped down. He asked what happened there. I responded that, that was when Mike started to culture MRSA. Then in January you could see an improvement. I offered that, that was when they started the vancomyacin (sp?).

Dr. D said that generally they don't treat MRSA in CF patients because they don't find that it does anything. He looked over at the medical student in the room and remarked that they would have to note this. Mike was markedly better than he had been. He looked at me and said, "We don't ever see this, maybe only a couple of times." I've seen it before - it's an answer to our prayers - our Easter Miracle. We are so thankful.

Thank you to all of you who continue to pray for Mike. I thought you would like to hear how your prayers are being answered. For our CF friends, Mike endures hours of treatments and hours of IVs to fight the MRSA. He switched his night feedings to day feedings as being hooked up to the feeding tube all night was disturbing his sleep. He now tries to tube several cans of formula in between meals. It is a lot of work but obviously this is working for him.

I thought you would enjoy this picture of Mike enjoying his celebratory champagne! Missy and her mother Carol joined us!

To our friends and family, May is CF awareness month and we are kicking it off with a fundraiser. Mike is still growing germs that have become resistant to all drugs currently on the market. He needs new drugs. It costs 800 million dollars to get a new drug from inception, through FDA approval and onto the market. We need your help. Richard, David and I will be participating in the Fond du Lac Great Strides walk on April 30, 2011. This will be the first fundraiser that Richard and David have participated in. They feel the need to help their brother in his fight.

If you feel blessed we would appreciate your donations. All proceeds go directly to the CF Foundation and not to our family. All contributions are tax deductible. You can contribute by going here:

Checks can also be made out to the Cystic Fibrosis foundation and sent directly to our home.
58 Cottage Ave. Fond du Lac, WI 54935

All monies raised for our team "Hike for Mike" will be credited to Richard and David. They are thrilled to be able to do something to help their brother.

Thank you all for your continued prayers and support. We couldn't do this without you. Blessings to you this Easter morning!