Mother's Day 2011

Dear Katie,

I love you. I endured much to have you. You were a tough pregnancy. It had nothing to do with the fact that I ate everything in sight and gained 55 pounds. You were a stinker. It took 24 hours of hard labor to bring you into the world. But I didn't even take an aspirin. Nope, wanted you to be as healthy as possible so did it allllll cold turkey. Contractions were 2 minutes apart and lasted for 1.5 to 2 minutes each. You got stuck. They broke my water and said push. I pushed for 6 hours. Burst all the blood vessels in my face. It was special.

I fell in love with you the moment I saw you. You were beautiful then and you are still beautiful. You were a perfect baby (good thing, did I mention the 24 hours of hard labor - most of it back labor!!!). And then you learned to talk. Things got a little challenging. You were tough to rear. I guess the labor should have clued me in.

Love you with all my heart.

Dear Mike,

I love you. I endured much to have you. It took the whole nine months to gain back all of the 55 pounds I had lost in the 3 months before I got pregnant with you. Not an easy task chasing another baby. Labor was a little easier with you. That's because you only weighed 7 pounds. You came out so pale. My beautiful little boy. I got my million dollar family. A boy and a girl. Life was good that first week. And then the screaming started. Hours and hours of walking the floors trying desperately to console you. And then there was more screaming, day after day as I would take you from doctor to doctor not accepting the diagnosis' I would receive like I was just a young stupid mom that didn't know what she was doing.

You were easy to rear. Always so easy going. Good thing after all that screaming.

Love you with all my heart.

Dear Richard,

I love you. I endured much to have you. Did you know that mom got PUPP 12 weeks before you were due? Do you know what that is? Look it up on the computer some day. It was nasty. Mom's whole body swelled with hives that itched. My skin and feet felt like they were on fire. I had little boils all over my hands and when they popped it hurt even worse. I went 5 days with no sleep. I thought I would lose all my marbles the suffering was so long and intense. I went on drugs I never thought I would take while pregnant. Took the epidural to have you. No more natural birth for me. I was weak and didn't think I could do it but you came into the world a beautiful little dark headed boy. You were an easy baby - good thing. Did I mention the PUPP???

Love you with all my heart.

Dear David,

I love you. I endured much to have you. Mommy was old and things don't always work the same. You started to fall out. Mom had to stay off her feet. Pre-term labor started at 4 months. Up for a few hours, down for a few hours. It was hard to sit. It hurt my back. Tried to do the natural childbirth thing and your chord prolapsed. During the emergency C-section the doctor cut across my bladder by accident. He cut again to get you out. Mom had to pee in a bag for 10 days. You were a baby like Mike. You screamed and screamed and screamed. We probably should have taken a cue from Katie and not taught you how to talk. You like to be sassy.

Love you with all my heart.

So Mother's Day is tomorrow and I guess it made me reminisce a bit today. Oh, are you all going shopping today? Well, print this out and take it with you for those moments when you are trying to decide between the $3 box of candy and the nice outfit from The Dress BARN or that pocket digital camera I've been longing for, it may come in handy! Katie, ask dad for the credit card and take the boys with you. Did I mention the 12 hours of hard labor, Katie?!

Well I'm off to do my physical therapy. I have had 6 weeks so far and several more to go. They say my pelvic floor is all messed up from all those pregnancies. I am enduring much to try to get out of the constant pain I have been in the last several years.

Happy shopping kids,

Love you with all my heart,

Mom

P.S. I hope you all enjoyed my little humor. You know that I only have one thing on my wish list. You know what it is but so that others will understand I will type it here:

3 John 1:4 "I have no greater joy than to hear that my children are walking in the truth."

See you all in church. . .

I am so blessed!

I have a dream . . .

I have had a secret dream for several years now. I didn't think this particular dream was really possible so I just kept it safe in my heart. Things get so busy and my life had other priorities. Every once in a while I would let it surface and I would dream about it. It made me happy to think about it and then I would realize it probably couldn't be and I would pack it away to think about later. And then Mike started getting really sick. My dream kept surfacing. I started to ache thinking that I hadn't lived my dream. I've gotten older and things are harder. Why hadn't I sought out my dream?

My dream is quite simple really. But to really understand my dream you need a little background. When I was about 5 years old my father taught me how to dance. It was fun. I loved it. I looked forward to dances - there seemed to be one all the time. My mom and dad would go out dancing. I loved watching my mom get all dressed up. My mom and dad were really good dancers. People loved to watch them dance. They danced as one. It was amazing. Time went by and disco came on the scene (I know - I'm dating myself here!). Girls would dance by themselves with other girls. I couldn't get into it. I never tried. Then someone asked me to take dance lessons. It was awesome. I was hooked. Dancing with a partner and putting the same steps my father had taught me to modern music was fun! I fell in love with dancing again.

I won my first dance contest on my 18th birthday. I also did a show on local TV. It was exciting that dancing was such a big deal. I remember people clapping when I would be out dancing in a crowd. I remember the same thing happened to my parents. It seemed to make people happy to watch. It was great exercise too. I took lessons and gave free lessons to anyone who wanted them. I could dance both partners positions. And then I entered a dance marathon. I danced for 60 hours (that's another whole blog post). I got kind of burned out after that. I didn't dance much after I had Katie and Mike. Once in a while someone would ask me to show them something but not often. Then I moved to Texas and learned several western dances. Caught the bug again.

The years passed and I didn't dance for a long time. Then Mike asked a girl to prom. I offered that I could teach him and his friend how to dance. He didn't think much of it at first but I coaxed him into it. They had fun learning. I remember how shy they were at first. Well as they say, the rest is history. Mike didn't stop dancing. He is an amazing dancer thanks to Julie and Frank. He entered dance contests with Julie and won some trophies. One day while I was scrapbooking Mike said, "Mom, you should take a picture of us with our trophies and do a scrapbook page." What a great idea. I had a trophy from the dance marathon and he had several. Why hadn't I thought about that? I never got around to taking the picture.

Then one day I shared my dream with Mike. I told him how I would love to learn to dance with him well enough to enter a contest. We don't need to place or anything. I will be happy to just get a certificate that we participated but I would love to learn a whole dance with Mike. So that is my secret dream. Mike is on board. He is thrilled to be a part of it. Frank and Julie both offered to help choreograph something. But I have to learn to dance again. I have forgotten so much and the dances have once again changed. You just can't learn this overnight.

Julie gives Salsa lessons (Mike's favorite) on Friday nights. (Go here to check it out!) For only $5 a person you can take a group lesson. I started to attend. They are a blast. I have a friend who started to take private lessons with Julie. He offered that I could go along - free - Thanks Pete! After a few lessons I was having trouble with my back. I am going through physical therapy to try and fix some problems I have had for years. This has put my dream on hold. I haven't been able to dance for weeks.

I wish I could have done this years ago but pregnancies and small children did not allow the time. I don't regret my choices at all. Now I am hoping to have the opportunity - God willing. Paul is very supportive of my dream even though he knows it will take some time. It is time I am taking for me. Time that, once I get better, I will be able to spend with Mike. I wish Mike could teach me but he doesn't always feel the best. And when he is feeling good he has a very special someone to dance with! He and Missy dance as one. It is amazing to watch. I pray we will be able to dance together some day. What a blessing and dream come true that would be.

I finally got that picture with Mike. The big trophy is mine from the dance marathon. The other three are Mikes! Love this young man.

Ecclesiastes 3:1-8
There is a time for everything, and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.

Love, love, love.
Blessings to you.

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!

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.

LIFE ACCORDING TO DAVID:
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!!

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:

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7074&idUser=467139

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!

IPV - Intermittent Percussor Ventilation

Hello everyone! I got to go see Mike yesterday. He was coughing a bit but was in good spirits. My friend Pam and I made the trip right after church. Thanks for coming with me Pam!! Good sermon by the way Pastor Nauman! I can't believe I forgot to take Mike the Lemon Meringue Pie my sister Lynnette made for him.

For our CF friends here is a clip of Mike doing his IPV treatment. This is his therapy of choice while he is inpatient. Gotta run. Blessings to you!

7.5 Weeks!

That's how long it has been since Mike was in the hospital or on IVs. What a blessing. It has been a looooonnnnggg time since he was able to stay out that long. And now it was time to go back in.

I was very thankful to be able to get off of work and take him today. I met his new nurse practioner, Tiffany. Young woman and very nice. She listens to him. Mike did PFTs like always. On his third blow Joyce said, "Wow, Mike that one blew the other two out of the water!" I got excited. She said something about 50. Could his lungs really have gotten better? She asked him to do it again. His coughing negated that one and they had to throw it out. He did another one that she said was close to the 50. She had to leave and I waited for the printout. Mike said he felt bad and would be staying. I was actually thinking that maybe, for the first time ever, we would be packed to stay and get to go home. Then came the printout, FEV1 30%. Mike was happy it wasn't 25%. I was happy about that too but had a little glimmer of excitement thinking it could be better. We are content it isn't worse. We are thankful he continues to get better with these admissions.

All in all it was a positive admission. His weight is a little down but hanging in there. His blood pressure was excellent and his heart rate was good. His PFTs are better than he thought they would be. He did not need oxygen when we got there (still needs it at night). They accessed his port on the first try and it drew back blood (that is a huge blessing). And he got a room with a window to the outside world. Now, if Madison would just move a little closer to where we live so we could see him every day . . .

So many blessings in one day. Hope your day was full of blessings too! Peace to you.