Grace

If you have not been following the blog titled: Audrey Caroline, I strongly encourage you to read up on this family's legacy. They have been through what I would consider one of the worst tragedies any parent would have to go through...and yet they have witnessed an amazing miracle. God's Grace is harder to see sometimes. And yet, when His Grace is the hardest to see that is when it is the strongest and most powerful. http://www.vimeo.com/951902 This link will take you to a very powerful video of a journey that a family has had to endure. It will make you really think about your life and what you have been blessed with even when you feel like everything is falling apart.

I remember when Caleb was first diagnosed with Cystic Fibrosis. I was down right mad at God. What did Shane or I do that was so bad that we would be "punished" like this? Why would He do this to us when we have been so faithful? This went on for months. I cannot speak on behalf of Shane. This is strictly how I felt. People would always tell us that God really trusted us in order to bless us with a child of His that needed some extra care. I always thought that was some kind of script that everyone was reading from. I know it sounds silly-but I would get so resentful of people saying that to us. Besides, they were not living our life-they had the "healthy" babies. Then several months, maybe even a year, I got it. God was not "punishing" us with Caleb. He was blessing us with Caleb. He gave us one of His most amazing children. Caleb was our gift from God. Because of Caleb we were forced to our knees in prayer. We could not do this on our own. I wish I could find all the right words to explain how powerful this was for us. Having Caleb brought us to a whole new relationship with the Lord. Interesting how Caleb means faithful one.

Before I end I also want to update everyone on Caleb's health. We are now on day four of antibiotics and his cough is about 95% gone!!! So at this point it does not look like we will have to do the steroid boost or an inpatient stay! So awesome!!

A 90 day check up for Caleb

On Friday we took Caleb in for his 90 day check up at the CF clinic at Children's Hospital. Good news and bad news. The good news...Caleb continues to be in the 75th percentiles for height and weight. Caleb is so sweet. He told Dr. Accurso that he loves him. I am sure Dr. Accurso's day was a little bit brighter after that :) Now for the bad news...Caleb has been struggling with a cough for the past 6-8 weeks. When the cough first came on we started him on antibiotics. Within two weeks the cough was gone. Well he has been off of the antibiotics now for about 2 weeks and the cough is back. Coughs in CF patients are huge red flags. Especially for Caleb because Caleb had cultured pseudomonas when he was about 8 weeks old. Pseudomonas is a very nasty bacteria that a lot CF patients will culture. There is very little studies that show that once someone has psuedomonas that it ever leaves their body. It is also an extremely aggressive bacteria (hence why it never leaves the body). Dr. Accurso is not sure if this is pseudomonas or not-but because Caleb has cultured it, Dr. Accurso is very aggressive in Caleb's treatment plan. So here is the plan: 30 days of antibiotics 2 times per day, 1 week of doubling up on the breathing treatments, and if by Friday the 2nd of May the cough is not gone then we will do a steroid boost for 5 days. If the steroids do not seem to calm down the cough then if might be tune up time. A tune up is a 7-14 day inpatient at Children's. Please Please Please pray that we do not have to do the tune up. Caleb has not had to have a tune up since July 2006. I know it is part of the disease-but I don't know how we would do it. Most importantly, how do I leave Haley for that long of time period-with who would I leave her with? Everyone else has lives too (work schedules etc) and financially how would we do it? I know that God never hands you more than what you can take on. Hopefully this is more than what we can take right now.

March Of Dimes

On Saturday I did the March of Dimes walk with Stef. It was really nice being able to have some conversation with her without little ones needing our attention. It was so STINKIN' cold. Stef and I did the very best that we could. Every time the thought crossed my mind about quitting early I felt so convicted. Colin could not quit. If he would have given up when the storm was passing through so many people's lives would be so empty. I just kept telling myself "Do not complain-Colin went through more than just walking in the bitter cold". But the truth is...Stef and I did take a "small" short cut in the walk and we did not stay for a lot of the festivities. That is why Colin was chosen to be who he is. We do not have the strength to go through what he has been through. And with that I thank God for blessing Stef and Byron with such an amazing and super cute little boy who will make us push ourselves harder. He has had a pretty big impact on many lives. That bitter cold walk was for you buddy!

Come on SPRING TIME!!!

On Tuesday we met Shane at a park in RockCreek. It was so nice. We are all ready for the snow to be done for a few months. The kids had so much fun.

Ooops!

While Caleb was doing his breathing treatment Haley fell asleep in her exersaucer. She didn't even cry. I felt so bad. I felt like I had won the "Bad Mommy" award. But she did look so peaceful.

This month is for Caleb!

We love this little boy!

So much to post..and it is always so late...

First off, thank you to everyone who came to the BJS proceeds night. It was a huge success. I do not have final numbers yet...but the manager has given me the "high-five". I wish I could explain the importance of how much raising funds means to us. Let me do a quick breakdown in somewhat lay-mans terms and see if I can get your attention. Please know it is currently 2:15AM and I may struggle a little bit :) In CF there are over 1500 different mutations that can cause CF. CF is genetic-meaning he has to get a mutation from both myself and Shane. About 85% of all CF'ers carry the same mutation, DF508 (delta-f 508). But would Caleb carry what almost all CF'ers carry-of course not. One of his mutations is known as G511D. Only about 3-4% of all CF'ers carry this gene. I know...don't worry...we do play the lotto. So with CF the chloride (aka salt) cannot move through the cells either because it is blocked off or the protein site is not there. I always try to think of a gross slug. If you put salt on a yucky-mucous looking slug it will pretty much melt away. Same with Caleb. If we could get salt to move through his cells, CF would either be manageable or be cured becasue he would not have the massive build up of mucous in his lungs that infection so easily get stuck to. Now for the exciting news. The doctor that we see at Children's, Dr. Frank Accurso, leads up a lot of the nation-wide research for CF (could we possible be any more blessed). Well, they have found a drug, an oral pill, that would essentially allow the salt to move through the cell. But they only worked on one mutation to find this out. You would think they would have researched the DF508...but they didn't. They found it on the G511D!!!!!!! Can you believe it!?!?!? So the story continues. To get a drug or therapy approved it has to go through rigorous testing (rightfully so) and it costs TONS of money. In Colorado there are a little more than 500 who suffer from CF, about 30,000 nationwide. There are more people in Colorado that suffer from M.S. than C.F. nationwide. So it is EXTREMELY hard for the Cystic Fibrosis Foundation to get pharmaceutical companies to help with the research. Not much return on their dollar. Bill Gates gave $20Million to help with the research of this drug and the CFF matched it. But we are still so far from getting enough money for this drug. I know it will happen-because God has been in complete control of this from the day we were blessed with Caleb. Caleb currently takes 9 meds per day when he is healthy, this one pill would replace 95% of those drugs. If this drug continued to be promising and it was released for Caleb-I would hit my knees with praise and joy and humbleness.

Shane and I had soon figured out why God had blessed us with Caleb when he was diagnosed. It was to give us our "assignment" in life. Our assignment is to keep our faith in Him, first and foremost. Secondly, to be a witness to his miracles so we can share our testimony. Wouldn't it be amazing if this drug came out and instead of one day having the "talk" (and I don't mean the s e x talk-I mean the "your sick" talk), I could tell him how he has been healed and he is just like everyone else because of the amazing gift that God gave the CF doc's?

This is why we will be nagging so many people to donate. Even if it is "just a dollar". If every single person gave "just a dollar" do you know how many dollars we would have?

You can donate at: http://www.cff.org/Great_Strides/MelissaNolan

Or you can mail me a check.

Reminder for BJ's night for CF

Just a quick reminder that tomorrow night (Monday, 7th) is our proceeds night at BJ's for CF and Caleb. DOn't forget your flyer and if you do come track Shane or I down to attach to your bill. We can't wait to see everyone there.

**I will blog about my girl's weekend later-but right now I am exhausted and we have a big day ahead of us tomorrow.

First time away..

Well, I am going on my first little getaway in almost 2 years. I am going on a girl's weekend. I think I might just scrapbook the entire time :) I have to be honest though...I am so sad to leave my babies...it is so ironic because sometimes during the day between spilt juice, dirty diapers, Haley crying to nurse, Caleb getting jealous that he wants more Mommy time, and the laundry that has been piling, I find myself pleading for a break. And now that I am getting one I have to keep holding back the tears. Ridiculous huh! But it is true. My kiddos have made me who I am. It will be good for me to get away and give Shane some Daddy time with his babies. I have lots to post...but I am way too tired tonight so I will post more later. Hope everyone is doing well. By the way...Caleb is pretty much done with his viral bug he had. Shane is still working on getting better, and Haley seems fine. Thank goodness!!!