I got to see him dance tonight!

This dance thing . . . actually started with my mom and dad. They were great dancers. People actually paid them to dance in their taverns - get people going and all. They were really good. I say were because they don't dance much anymore.

My dad taught us to dance when we were little. Does anyone remember when the bar up the street would have street dances? Barricade off the block and fire up a band. It was so much fun. Weddings always had a band back in the day too. I can remember doing the polka with Uncle Jim and you would count how many times your feet actually hit the dance floor, as he swung you around, lol.

Then came disco and I wasn't much into that so I sat like a little wall flower. But then Arthur Murray came on the scene and started teaching ballroom dancing again. Swing, fox trots, hustles, it was fab. Won my first dance contest on my 18th birthday. A few years later after dancing for 60 hours in a dance marathon, I got kind of burned out. Hung up the shoes so to speak but I had many lessons under my belt.

I would teach Katie and Mike how to dance at weddings when they were little. They didn't show much interest. But then Mike got into high school and proms came. I taught he and his friend some swing steps and the rest is history. Mike loves to dance. I love to watch him. He has enjoyed learning to dance and going to competitions. Julie has taught him so much. Now he dances at Frank's studio also. He gives lessons. Check it out some time!

Here is a pic of him dancing tonight with Julie. Outside, down at Buttermilk park. I was far away and it was getting dark but my heart took a picture. He is living my dream - dancing. I loved to dance. I think I will have to pick this up again.

It is hard to believe when you look at this picture that he is dancing with 50% lung capacity.

Hard to believe he needs oxygen at night.

Hard to believe he has to work so hard to be able to do this.

Hard to believe that a few weeks from now he won't be able to do this. . . and then by God's grace he will dance again.

Hard to believe.

I'm still working on the post to let you all know where Mike is at and how he is doing. It is coming, it is just hard.

When I blog about Mike to keep you all posted as to how he is doing, I will put his news at the top of my posts so that those of you who love him don't have to dig through all the other stuff to get an update. How does that sound? Good. I thought that might be better.

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In other news. . .

This VERY special young man turned "7" last week. Happy birthday to my grandson GAGE! His mom got him a new bike!

We celebrated with donuts and candles early in the morning!

He is so precious.

And in funny sayings last week - this one tops the list:

Driving in the car to the store . . .

Richard: Mom, do churches have humor?

Mom: Well, ahhmmmm, . . . I don't know . . . I mean I think so, well I don't think there is anything wrong with humor I guess, why?

Richard, very straight faced with no emotion in his voice . . .

"Well, that sign back there on the Methodist church said,

Text while driving if you want to meet Jesus.

I guess that was a joke, huh?!?"

Everything is Beautiful

I'm changing up my blog a little. I'm going to create a new blog for my Project 365 photos and start to use this blog for the reason I created it. If you look you see I created this blog in 2007 and only posted once until a couple of weeks ago. My intent was to keep family and friends posted about our daily lives but also blog our experience of living with Cystic Fibrosis.

I had searched the net and found so little. Well that has changed :). The other night I was in a chat room with some wonderful women. We laughed and laughed and it did my heart good! I found a few new blogs and am so appreciative of the people out there willing to share their experience.

Because I so appreciate the sharing of information I will do my best to occasionally update the situation here in hopes it will help someone else like others have me.






This is my cute son Mike :) He is 25 years old and living with CF. This is our everyday. Here he is hooked up to the "Vest" that helps him be independent and do therapy on his own. He does this at least twice a day along with the neubs you see hanging from his mouth. This $16,000 piece of equipment has been a tremendous blessing in our lives! The tubes from the compressor attach to the black "vest" and shake the mucus from his lungs to help keep them clear :)



This is also Mike.



And when he's not doing that (because it's too cold) then he's probably doing this:





He's a pretty good dancer and instructor. He works hard at it!


Now I didn't get the name Pollyanna for nothing but I also believe you should keep it REAL! If I didn't I would feel like that would be denying Mike's experience. So here's to keeping it real! More to come.

Remember - you don't die with CF . . . you live with CF :)


And one other thing - for you newly diagnosed families, CF is much different today than it was 25 years ago and your journey will be quite different. There have been so many advances in medical technology - Praise God.

Blessings! Email us if you have questions :)

Proud?

This past Sunday was the very first time that Richard followed along for the entire church service. Every time I looked over at him he was singing the hymn, praying the prayers written out in the service folder or hymnal and just paying attention. I was so happy to see him participate. Was I proud? I shy away from that word. Are we supposed to be proud? The Bible has so much to say about being proud.

proud - feeling or showing pride. a) having or displaying excessive self-esteem
Proverbs 16:5 The Lord detests all the proud of heart.
Be sure of this: They will not go unpunished.

It seems to use the word proud would make it all about me but it isn't - it's all about him! And I am pleased that he is walking in the way of the Lord!

Last night was one of the worst nights I can remember as far as no sleep and trying to fight asthma and coughing. David coughed more and more as the day progressed. By the time it was bedtime he was coughing constantly. A call to the doctor confirmed that steroids would be the best alternative as well as steamy showers and albuterol treatments every three hours if needed. Poor little tike! I gave him the prednisone at 8:00 and then did an aerosol treatment at 9:30. By 10:30 even though it was causing me great guilt I opted to use some cold medicine to try and dry up his nose in case that was the cause of the cough. We had a steamy bath at around 9:00 and that seemed to calm the coughing some while we were in the bathroom but it started up again when we opened the door. David finally slept between 11 and 12. I said so many prayers. Every time more than 30 seconds went by without a cough I said thank you that he got a little break. When the coughing started back up I prayed for patience and strength. By 12:30 he was coughing pretty good and by 1:30 I was up and giving him another breathing treatment. He just shook. It scared him. But this time it finally seemed to help. He slept from about 2ish until around 4:30 and slowly the cough started to get more frequent. That is one of the benefits I guess about having another child with Cystic Fibrosis. I don't get totally freaked out when this happens. I know these little guys can take a lot. I remember walking in the room thinking David must be exhausted from the coughing, I'll just hold him - to find out he was half asleep. I remember Mike telling me just before he was admitted this last time that, "You know mom how you always say I keep you up all night with my coughing? Well, now it is waking me up too. Most of the time I just sleep through it and I don't know what you are talking about." So as long as he was somewhat sleeping through it I left him to sleep. The night would have been so different had I never been through any of this before. I slept from 2-4 and then on and off until 6. Paul got up and did a treatment at 5:45 a.m. David is napping now and hasn't coughed for almost 3 hours!

Sunday night I got to go watch Mike dance. What a blessing! I am so thankful he is strong enough again to dance and it is so wonderful to see him happy. I am always amazed at the people he meets dancing. I met the nicest couple that think Mike is the greatest kid. It's just so nice to see others that feel the same way that I do. He did the coolest dance and if I find a way to upload my very poor video tape (lighting was bad on the dance floor) I will do that. Kids are waking up from naps so it's time to go.