2012 Great Strides: Taking Steps to Cure Cystic Fibrosis--Let the fundraising commence!

This is our first experience in the community with the CF foundation! I'm super excited. On June 2nd team "Miles for Miah", in honor of my baby boy Jeremiah, will be participating in the Great Strides 2012 walk. Ironically it is Jason's home town, Port Huron, MI. 

So a little bit on the Great Strides walk... This is a direct quote pulled from the Cystic Fibrosis Foundation's webiste: Great Strides: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation's largest national fundraising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2011, nearly $38 million was raised to support vital CF programs.

And here is a video to give a visual of what we're going to be doing...

Amazing right?? How can I not have hope when there are such astounding strides (pun intended ha) happening? The CFF has paved a way and been a model for other foundations dealing with fundraising and support.

So why donate? It's because of people like you that developments are achieved! Just this year the FDA put a new drug out on the market called Kalydeco. This drug treats the underlying common cause for Cystic Fibrosis in certain gene mutations! This is a HUGE step toward finding a cure. It gives me so much hope that by the time Jeremiah is of age when he can take most of the treatment drugs, that the cure could be there. This gives us 6 years people. In the grand scheme of things, this is not a long period of time.

If you are interested in supporting Miles for Miah, it is crazy easy to donate. Below is a link to my page on the cff.org/greatstides website (which is how you can get to it if the link doesn't work). Just click on "Click to donate", put in your info, and the amount and WAMMO! You've just helped out finding a cure for not only my sweet boy but for 30,000 other people as well. If you're a business or know of a business who would like to sponsor our team and get the logo onto our t-shirt, that my sisters business Solum Graphics is creating, please let me know A.S.A.P. We need to get the shirt design in within the next couple of days. If you would like to purchase a shirt, I'll be able to get info to you as well as soon as I get the quote.

Here is my link:
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7793&idUser=560505

 I'm excited to meet all the teams and people there that are also affected by Cystic Fibrosis. Although this is a fairly rare disease, I am astounded at how many people know someone who has been affected by it. It gives me great comfort to know that we are not alone in this journey.

If you feel that other people would be willing to help us in this amazing cause, please pass on this website. I am totally new into this world and I want to do all that I can. I would appreciate all the help I can get! Help us in turning CF into Cure Found. Thanks all and God bless! He is so good!!

Curveball in routine

At least this post won't be as heavy as the last... 

Our little man is doing great!! And that's what he truly is; a little man. I have never seen such maturity in an infant before. Everything that we're throwing at this kid, he does it with full trust in us. 

Yesterday we went in to have our monthly checkup at the CF clinic. The people there are so great by the way. They are all filled with passion for their research. It's so refreshing to have them be so personally involved with us. They make us feel like Jeremiah is their one and only client (far from the truth). They smile when we smile, they cry when we cry. Even though it's for an unfortunate situation, they make it so much easier. I'll sing their praises all day... Anyways, getting back... When Dr. Thompson listened to his lungs, I was sweating bullets. She carefully checked them (I was hoping she could hear them properly over my child screaming his face off) and my heart leapt when she announced that they were clear!! Praise the Lord! Of course this could change at any time (prayerfully not for a looooong time) but I'm praising in the fact that we made it through at least one month without them getting gucky. That's the only way I can manage all this, taking it one month at a time, not thinking about the far off future, and praising in all areas. Big or small. 

So our little boy is healthy for the meantime! *wipe brow here* The only thing that was of concern was his weight. (Told you this kid was screwed with parents like us..) He has a steady weight gain, just not fast enough for them. They told us that we needed to start supplementing him on formula AFTER he breast feeds. Luckily, the day before I tried him on a bottle with "mommy juice" and he did great with it! With everything else that he's had to do, I was confident that he would take the formula. 

The first time I gave him the formula I wish I had video taped it. What expressions this guy has! He just looked at me like I was crazy. (I guess I need to get used to that look when he turns teenager...) He would take a careful slow taste, shudder, and give me his stink eye. He was not a fan... But I remembered this little guy likes everything above normal warmth. So after a tad warm up, he ate 1.5 oz of formula after my (assuming) 2 oz. Not bad. Not bad at all. Like I said, this kid is a champ. 

The hardest thing for me with having to give him formula is facing the fact that my body isn't providing. It isn't providing enough of what my baby needs. I know this is an abnormal situation and if he was "normal" (whatever that is) then it probably wouldn't be an issue, but I don't like having to go superficial. With hormones raging it makes me feel inadequate. Not looking for sympathy here but I now understand how mothers feel when they cannot breast feed. It's a struggle! Tell you what though, I'm reading every tip out there to get my body up and running for this challenge! If anyone has any themselves, pleeeaase let me know the secrets! 

So now our schedule in the morning consists of: enzymes-salt-applesauce spoonfuls, breast feed, bottle feed, diaper change, nebulizer with albuterol, chest percussions, sleep for a second, start all over. (minus nebulizer and chest PT) Yes, when Jason gets home at 2:30 pm he see me still in my P.J's and house still untouched. But this wonderful man continually tells me that he doesn't care in the least that I am not a "Martha Stewart wife". As much as I love her style and organization, I have a long way to go. 

One of the things I have learned about myself is I do not like cleaning during the day, but I actually enjoy it more at night. I find myself cleaning the sink right and hurriedly cleaning up small clutter messes before I jump in bed. Go figure. Whatever works I guess?? So if you come over and find my abode in less than tip top shape (which is pretty normal) I will more than likely be cleaning it that night. Sorry if you miss that small window of cleanliness... This woman is still getting her weird routine toned up (and a baby trained to hang out by himself for a bit without sirens sounding). I am confident it will get together...sometime... In the meantime, I will probably not be hosting many tea parties with the Queen. 

Some images of our continuing journey

He does not like the cold

Naps better in a queen bed up at Oma's then anywhere else. He has sophisticated taste... 

After the visit to the CF Clinic. Jason and I treat ourselves to Smash Burger each time to give us something to look forward to

He's a ham already

Dad's first time feeding!!