CF appt/Research Studies

My son is almost 11 weeks old and is already earning himself an income. Yep, that is correct, pretty impressive huh! Today, we enrolled him in a research study that our doctor, Terri Laguna, is conducting and it will pay him $150. Into the college fund it goes!

There is very little research done on infants w/CF and the U of MN is trying to get as much information on the young ones as possible. They know that changes occur in the first year, but right now they do not have a way to track those changes. At this point, there is no way to predict how "severe" Gavin's CF will be and they are trying to find ways to predict these severity levels of CF to allow them to conduct better preventative therapies to keep CFers as healthy as possible. They will take urine & blood samples from him along w/doing a bronchoscopy on him (to check his sputum) when he is 6 months & 1 year of age.

Also at 6 months, they will do an infant PFT on him where he will need to be sedated (not part of the study, this is for all CF babies at our clinic). A PFT is a Pulmonary Function Test where they can test his lung functions. This is a common test for all people with lung issues (asthma, CF etc). When he gets older he will be able to blow into a machine to measure his functions, but as a baby they have to do the breathing for him. He will be slightly sedated (just asleep but still breathing on his own) and a life jacket like coat will be placed on him. A mouthpiece will "breathe" air into his lungs and the jacket will compress to expel his air. Because he will already be sedated, this is when they will do his bronchoscopy for the research...it will all be done together so it will be easier on Gavin. The only reason they have to go into his lungs (bronchosopy) to get a sample of sputum is because he is too little to cough it up himself, another reason why there is so little research on infants. Very few CF centers conduct PFTs on infants because of the technology needed, so we are again SO lucky to be at the U of MN! But I have decided I do not want to be in the room while they conduct the PFT & bronchoscopy...just too much for this mom to see!

Casey and I are also signed up for a research study being conducted on parents of CFers. There is a trend of severe sinus issues (which I had growing up) with CF carriers, but not with all CF carriers (Casey did/does not have them). Through bloodwork, they are trying to find a pattern/trend so that they can better understand the sinus issues with CF patients. We don't get reimbursed for this study but that it is ok with us!

We have decided that we will enroll in all research studies that we or Gavin qualify for, as long as there are not too many risks/consequences. We are determined to help in every way we can to end this disease and to find a cure. Maybe I get this from my Grandpa being a doctor or maybe from watching my dad suffer from a terminal lung disease...whatever can help our little man and those in the future is always a positive! My dad once told me, "I am doing all that I can (lung transplant, meds, treatments etc.) to try to live longer for you kids and also to help the doctors in their treatments for people in the future. If it helps someone ten years down the road, then it was worth it." Little did he know that what he taught the doctors after his lung transplant may very well benefit his grandson. Thinking about that often gets me choked up, my dad was such an amazing person!

A study on Gavin's stool sample we gave at our last appointment proved what we thought, his pancreas is insufficient. Meaning, it does not produce any enzymes to help his body absorb fat & certain vitamins. Disappointing, but what we expected. We also retook his sweat test today (he didn't provide enough sweat last time), which came back positive at 107 (normal is below 30). Also what we expected. We're glad everything has been "by the book" so far and Gavin has not left any of the doctors scratching their heads trying to figure out what is wrong. The fact that his pancreas levels are low (below 50, normal is over 200) does not make him more apt to get CFRD (CF Related Diabetes) nor do his sweat test results predict the severity of his CF...that will all be determined in time.

Oh by the way, he is now in the 60th percentile for his height to weight ratio.....Goooo GAVIN! Our doctors are thrilled! For those of you attending the walk with us on Saturday, you will get a chance to meet Gavin's team of doctors :)

We asked Dr. Laguna about the swine flu and she told us to handle it just like we would any other normal flu outbreak. Don't go around sick people and wash your hands! So the whole family will be attending the walk!

Now to just find a research study that Louie (our dog) can qualify for...haha!

Wordless Wednesday

Only four more days!

Why is it that I always wait to do everything until the last minute! For some reason I've decided that I could paint our upstairs, make the t-shirts for the walk, write 20 or so thank you notes, clean up the house, prepare food for after the walk AND take care of a 2 1/2 month old...all to be done by Saturday. So far we cannot even decide on a paint color, the front of the shirts are done and...well that's about it. Looks like I'll have a busy couple of days ahead of me!

For those of you curious, we haven't really done anything different since the swine flu "outbreak." At this point we are still planning on having Gavin attend the walk on Saturday unless our docs tell us otherwise at our appt on Thursday.

This morning Casey showed Gavin his drumset for the first time. Not so sure that Gavin knew what was going on, but he didn't freak out with the loud noises! I think he liked the vibrations when we set him on the snare drum.

Last night we went to Baker's Square in Bloomington where we were able to meet Patrick, our representative for the MN Chapter of the CFF. I only got to talk to him for about 2 minutes, Gavin woke up while we were waiting for our food, decided he was hungry and screamed until I fed him in the car (he has decided that he is no longer a fan of bottles, so annoying!) By the time Gavin finished Patrick was on his way out. Oh well, at least my mom and Casey were able to have a good conversation with him!

We will have 20 people "walking" (two will be in strollers) and then we're having the walkers come over to our home for food/drinks/lawn games. We live only 5 minutes or so from Lake Calhoun so it's nice and convenient! We have yet to figure out how we will both shower, give Gav his treatments and feed him w/o having to wake up at 4 am! Here's a preview of the shirts that we'll be wearing for the walk on Saturday! I made the shirts today from the design my cousin Lacey came up with, thanks Lacey!

They say:

Cystic Fibrosis

I'm Walking For A Cure

Birthday & Sleeping In

The weather here in MN wasn't the greatest this past weekend, but everything is starting to get so green...finally! Even the trees are budding, hello spring!

On Sunday evening we went out to Stella's in Uptown to celebrate Uncle David's 24th birthday. Still can't quite get my mind around the fact that my "little" brother is 24! Gavin was well behaved, whew! He hadn't slept ALL day so we figured that he'd sleep through dinner. WRONG! But at least when he was awake he was in a good mood and just wanted to snuggle on someone's shoulder. The waitresses kept oohing and ahhing over him. But of course, when we got out the camera to take pictures, he was fast asleep...

When I dressed Gavin yesterday morning, I guess I was supposed to put him in Twins gear (they played at noon), not Gopher gear (Casey pointed out that they were not playing) but he is so close to growing out of his Gopher sweatsuit that I figured it was a great outfit for a rainy day :)

This morning Gavin decided he wanted to be awake at 5:30 a.m. Mom was definitely not feeling those early hours so I pulled him into bed with me after feeding him. Whenever we do this he usually sleeps about an hour, this morning he slept another three! So we both didn't get up this morning until after nine, it was wonderful :) But I can't complain, he consistently sleeps eight hours a night these days!

NYT Article

This article was posted on the New York Times website today, the two drugs mentioned are both of the drugs I have mentioned in the past that have the potential to benefit Gavin greatly! Pretty exciting stuff!

http://health.nytimes.com/ref/health/healthguide/esn-cystic-fibrosis-ess.html?ref=health

Giggles

We took this video on the 13th, one of the first times Gavin laughed at us! I just finally figured out how to upload videos from our new video camera :) Try to ignore the squeaking in the background, it's our dog Louie playing with a ball. Isn't Gavin just the cutest?!?

Wordless Wednesday

Phone call from Patrick!

We had a pretty exciting phone call this morning from Patrick. He is our representative for the MN Chapter of the Cystic Fibrosis Foundation. Patrick got a call from the NATIONAL center asking, who in the world are these Gavin Groupies that are raising so much money?!?! We have gotten NATIONAL recognition! How awesome is that! We are so impressed with how much support we have received from our friends and family, and are shocked at how much money our team has raised! Our team walking on May 2nd, has raised over $5,000! Holy buckets! That doesn't even include what my cousin Lacey & her b/f Paul have raised for the Chicago walk, my Aunt Joly has raised for the Dubuque, IA walk and what Casey's sister has raised for the walk in Evansville, IN! Thanks so much everyone!

Also, there is another fundraiser at all Bakers Square locations in MN this coming Monday (4/27) night! 10% of all proceeds benefit the CFF Foundation, so please go out to eat there that evening! We will be eating at the location in Bloomington so that we can meet Patrick face to face, and hopefully this time we can meet some other families. Please come out and join us! And bring a check with a donation...hehe!

A Weekend In Rochester

We spent the last 4 days in Rochester spending time at Casey's parents. Casey's sister Stacy was in town from Indiana with her kids Morgan (4 1/2) and Grant (15 months). Yes, we did constantly call Grant, Gavin and Gavin, Grant :) It was a blast to finally get all three kiddos together! Gavin loved to stare at Morgan and Grant while they sang and danced around, its not often that he gets to spend so much time with people close to his size!

Casey's Grandma Jerry and Aunt Julie threw me a baby shower on Saturday morning (at Casey's parents place) which was a lot of fun. We got a ridiculous amount of stuff, it was amazing! Gavin officially has newer (and probably more!) clothes than either myself or Casey. What a lucky little boy to have so many people that love him! Gavin was awake for the hours before the shower, slept through the shower, then woke up when it was all over :) But again, its better when he's sleeping than screaming! Gavin has some of the loudest screams that I have ever heard come from such a little baby!

Are you ready for picture overload??? OK, here we go!

The first cousin encounter (Gavin's cousin Morgan)

Snuggle time

Our beautiful blue eyed boy

Gavin's cousin Grant

Stroller time for the boys

Grant liked to lay in the storage compartment of his stroller

What a goof!

Baby shower time

Out like a light, but all dressed up for the event!

I'm gonna be a drummer just like my daddy!

Now who were those toys actually for?!?

Grandma with her boys!

This kid was constantly on the go!

Aren't I cute???

Check out my chunky thighs!

Ok so who do I look like? My mom...or my dad?

I was pukey this day so they took all my clothes off

The three amigos!

Ok this is getting boring...

Yep, I'm done with this picture stuff

Gotcha Uncle Casey!

Look! I actually have hair!

Chillin w/Grandpa!

G' Night!

Why would I sit on the couch?!?

The toy boxes are the place to be

Easter in Aitkin, MN

This last weekend we went up to our cabin in Aitkin, MN. It was a little chilly but warm enough to spend some time outside. We packed Gavin into the Baby Bjorn and took a nice long walk on Saturday. Louie went on at least two walks each day and he was so exhausted at night that he could barely lift his head! Gavin celebrated his first Easter and got a few presents (and some chocolate candy, wonder who that was for?!?). Gavin received a new stuffed bunny and a lullaby soother for his crib. Here are a couple of pictures from the weekend!

Is this all for me?!?
I am the same size as my Easter basket

I think my parents bought me chocolate candy
so they could eat it themselves...

Me and my new pal Mr. Bunny...he lives in my crib

It looks like I am enjoying the view, but I was actually
very grumpy and crying

It sure was windy! But it was a fun weekend
at the cabin!