Saturday, May 29, 2010

May is CF Awareness Month

If you are reading my blog you are probably a relative or close friend and you are very familiar with Cystic Fibrosis. You have read all about this disease and understand how devastating it can be. In May we take a moment and refocus our efforts once again on getting the word out about CF. Why? Because CF awareness saves lives. It's that simple. There are two fundamental ways this happens.

1. Early Detection - By telling others about the symptoms of CF like chronic lung infections, poor weight gain etc., someone may pick up on a diagnosis earlier than if they had had no idea. This has already happened in our family. Early detection is key to living healthier and longer in CF. When others learn about CF lives can be saved.

2. Helping to find a cure - When people know and understand that CF is a - still always fatal disease - they want to help us find a cure. Most states already have tests for infants to tell if a child has CF. This early detection along with life saving drugs and better enzymes to help with digestion have increased the life expectancy to 37 years. But every day CF patients are still dying waiting for a cure. Spreading CF awareness to aid in helping fund research saves lives.

So won't you please help us spread the word about CF? Decide right now to talk to someone new about CF. You can even tell them about your nephew, cousin, friend Mike and how this affects him and so many others. Then tell more people.

Research has come so far. I can still remember when it didn't seem like we would ever find the gene for CF. Now we not only have that but there are many new treatments to help fight the infections as well as promising new breakthroughs that will actually get to the root of the problem with the CF gene. If you have been blessed and are able please consider making a donation to the Cystic Fibrosis Foundation. Rest assured that your money will be well spent as only 10% of each dollar goes to administration costs. Yes, that is correct 90% goes directly into research for finding a cure. I have a button just to the left that will take you to the CFF website. On the right side there is an orange button where you can securely make a donation. Or simply click here.

There is one other way you can help. Please consider being an organ donor. I also have a button to the left that will take you to a website to give you more information. Many CF patients are waiting for a second chance at life through double lung transplants. Talk to your families and let them know your wish and then sign your driver's license letting them know of your selfless, life saving decision.

Thank you for your support. Whether financially, volunteering, becoming an organ donor or telling others about CF - it all helps and we thank you!

I know I'm a little late to the May CF Awareness party but any month is a great month to think about CF awareness. THANK YOU!

I don't know what the future holds but I know who holds the future . . .

Thursday, May 27, 2010

Last Day of School

Can we have a couple of thumbs up for that?! This is SO Richie (on left - friend Kyle with him) - happy it was the last day of 4th grade. He is ready for summer! He is now an official upper grader!! (Well after the closing service tonight!) I'm still hoping to get a pic of Gage with his teacher tonight. It is on to 1st Grade for Gage :)

Dad will finish tomorrow.

And it is a special day for Grandpa Bob - Happy 70th Birthday!! Nettie and Bob are two very special people who have been helping with David through all of this. They have been such a blessing to our family. David loves his little trips to Grandma Nettie's and Grandpa Bob's house! Thank you so much for helping and making David feel so special! XXOO

Mike got a room! And a really nice room at that! It has been a really long time since Mike had a decent room. This may not seem like a big deal but when you have to stay in it with the the door closed (isolation) for 14 days it really is a big deal. For the past several hospitalizations Mike's room hasn't been big enough for two chairs. With all the equipment in the room you can't walk and when someone comes in the door you have to stand up and move stuff out of the way.

Do you like my new button to the left? I still have one more to go. More on that later.
Dear Mike,
I miss you.
I miss seeing your cute smirk when David says something funny.
I miss seeing you in your Suzuki jacket getting ready for a ride.
I miss your dirty dishes in the sink.
I miss you coming in the door or walking down the stairs 5 minutes after David goes down for a nap.
I want to see you dance.
Thanks for being so brave.
Thanks for always being kind and respectful to me, doctors and others.
Thanks for putting up with me as I'm trying to figure this all out.
Thanks for continuing to fight.
Thanks for living life to its fullest.
Thanks for trusting God.
I respect your decisions.
I love you - get better soon.
P.S. CF sucks!
I wish you had a room so I could send this to you in a card.

Wednesday, May 26, 2010

No room in the Inn

So Mike is all checked in - in a holding pattern ;). They don't have a room on his floor just yet but his port was accessed successfully and he already had his first round of antibiotics before I left. Cipro and Meropenem (sp?).

He lost 5 pounds but that should come back as the infection in his lungs clears up some. His resting heart rate was in the 80s and his oxygen sats were at 94 on room air and no temp. All good stuff. His Fev1 was 32%.

Thankful for another day of peace. Time for bed :)

P.S. Richie had his first baseball game last night - they won!

Tuesday, May 25, 2010

It's a new day

It is a new day and I am so thankful to have peace.
Started the day with a quick trip to Wal-Mart to get all those things that Mike likes to take with him when he goes on his two week trips to his favorite Wisconsin Resort. Yep, Mike is getting ready to go. Click here to read about how that works. (If you click on the picture you should be able to read the journaling.) We are all stocked up on ketchup, hot sauce, pay day candy bars, oreos, Kleenex, chapstick and chips.
I am armed with a list of questions for his docs - thanks to the wonderful CFers we have met online. Hoping to get more answers. Mike is hoping to get relief from the hurting port and get his feeding tube changed to a MUCH smaller one. And of course he wants to breathe better - he is having trouble going up and down the stairs so it is time for IV antibiotics.
David is all set to see another pediatric opthalmologist in June. My mom helped me by researching and finding the telephone number so I could make the appointment. That was such a huge help. It is little acts of helping like that, that encourage me and lift me up - helping me to feel like this is all manageable. God is so good. He gives you exactly what you need exactly when you need it.
My sister Terri stopped by last weekend and brought me a book. Something to read just for fun - what a novel idea. Okay that was really over the top but seriously, I never read for enjoyment.
Today when I opened my email there was a lovely message from someone who just wanted to encourage me - what a blessing.
I have so many questions about CF and the aforementioned wonderful CFers online are taking time out of their busy lives to answer my questions and help me understand. Bless them.
What we are going through seems so trite compared to what others are facing. Go here to read (and say a prayer for) Jim a CF patient who is going through his double lung transplant recovery. And you all know others who are having a rough time. It is just so reassuring to know that no matter what we are going through - big or small - there are people here to encourage and support us. So thank you all for the encouragement and help. This is a huge step for me - asking for help and accepting it.
This is what made me smile today.

Mom: David, what do you want for lunch?

David: Spaghetti O's!!! (I throw them in the microwave)

David: Blows, and blows and blows on them.

Mom: David, eat your lunch before it gets cold.

David: Mom, I need you to put it in there (points to microwave) and make it warm!

Mom: I just did make it warm.

David: No, you made it hot! I want it warm!

His innocence and inexperience always warms my heart. I'm trying to take his advice and laugh more :). This little guy will turn 5 next week. Five is so special. I better be getting busy planning a special day. Today he says he wants a pool. This will change every day until next Friday I'm sure!

This is David showing me what he learned to do at school when the tornado siren goes off.

It's a new day - make it a great one!

Monday, May 24, 2010

Coming back from the grip of despair

It can be difficult to crawl out of a hole when we have let that hole grow very deep. It doesn't happen consciously of course. But the big hole is there and it can sometimes be difficult to see the top or even begin to imagine how to climb out of it.

I have said many times over the past several weeks, "Man, it is just so hard to see the light at the end of the tunnel. I can verbalize that I believe that there is a light there, I can even see others that seem to be near the end of their tunnel but I just can't see it." I was thankful to be verbalizing it and I am trusting it is there.

I have never gone through a time when my faith has felt so tested. I felt weak, scared, panicked and alone. Very, very alone. Despair was right there. It pushed me into tears and feelings of confusion, fear, guilt and even regret. nasty stuff. It felt like 27 years of emotions were trying to bubble to the surface. It is so difficult to allow that with a 4 year old that just wants mom to be "happy" and told us so. I was looking at what lies immediately before me and it was overwhelming. Medical bills, medical procedures, questions that need answering, kids that have many wants and needs, insurance claims to be answered. Was I doing enough? Could there be more to try? Watching Mike's suffering. Watching David struggle with eyes that move in opposite directions - again. I need to get a job - but how will I get these boys to all their appointments? The list went on. And of course there are always the ugly words from even the most well intended people who don't understand but in their ignorance can cut through your heart like a knife. But I continued to pray and read my Bible.

"Give us this day our daily bread" what words of comfort. I have realized that sometimes it is okay just to look at today. Today God has supplied all my needs and the needs of those he has entrusted to my care. He promises to continue to do so. God has put some incredible people in my life to help me on this journey. I haven't been letting them help me. How silly. I asked for help and they have answered with open arms. God answers prayer.

What I have learned is that when I am focused only on my own situation (inward) it is very easy to slip into despair. But when we are focused on our purpose in life - why we are here - that all goes away. We are here to glorify God and encourage each other in our walk toward home.

I have found some amazing people lately. They encourage others even though they sruggle. Go here and watch how this young woman who is awaiting a double lung transplant while enduring hours of treatments, and illness still helps others by answering any question you have about CF and her journey and uses her incredible gifts in writing on her blog. Her gentle spirit that continues to look outward and encourage others is motivating. Thank you Piper.

Then there is Sarah, a young mother who is trying to figue out how to transition her 7 year old son to his heavenly home, while still meeting the needs of two younger siblings - touches close to my heart. She just posted a blog recently that said please don't stop talking to us. In her blog she shares how you can help those going through grief. She continues to give. I have been encouraged by her words and her strength. Thank you Sarah.

I have also been encouraged by my friends who have sent me cards, little gifts, taken me out to eat, dropped off cookies and goodies for the boys, babysat so I could be with Mike,or have called to check in. What a blessing you all are! Thank you from the bottom of my heart.

If you have said an encouraging word to me lately, thank you. If you have said anything at all and not avoided me, I thank you. If you have prayed for us, I thank you. My faith feels strong again. For that I thank you God.

"Therefore as we have opportunity let us do good to all people, especially to those who belong to the family of believers." Galatians 6:10

God, allow me to encourage others as you have seen to encouraging me. Amen
Blessings everyone! Encourage someone today!
edited to add:
P.S. And if you had to endure me being kind of a b*!ch during this trying time I'm SORRY - and thanks for understanding :)