I might be getting kind of tired...
Friday, May 29, 2009
I might be getting kind of tired...
Posted by Jen at 7:57 AM
Thursday, May 28, 2009
Gavin dropped at bit in his weight/height ratio (he's in the 34th, goal is the 50th) but the doctors are not at all concerned. His height grew a lot (just under 25 inches), and his weight not so much (14 pounds) so it throws off the ratio a bit. Infants are difficult to measure for length, especially when some nurses "stretch" him out further than others when they take the measurements while he is lying down. The height numbers are much more accurate once he stands on his own. If he continues to fall in the percentiles we will get concerned, but at this point our pulminologist is really thrilled with his overall health.
The CF team noticed his dimples for the first time today. Often, Gavin is sleeping through most of the visit and today was the first time he was awake for everything...alert, talking and smiling. Dr. Laguna kept getting distracted by him while she was talking to us, he's just too dang cute! :) He was definitely flirting with all the women! Our respiratory therapist, Anne, kept commenting on how beautiful he is. By the way, Anne's family (mom) is from Aitkin, the same small town where our cabin is located...such a small world!
People have been asking me what Phase three really means for the VX-770 drug. Sorry, sometimes I forget that not everyone deals with all this :) So here is a simplified explanation...
Phase 1: very beginning stages of trials. Studies are often done on animals (ie studying different levels of meds on mice to determine its toxicity) and on people considered to be healthy.
Phase 2: Begin testing on a small group of CF patients (all adults) doing studies that last a few weeks (this is where many drugs FAIL and the study/drug is discontinued) This determines whether or not there are any benefits to taking this medication.
Phase 3: BIG DEAL TO GET TO THIS STAGE! The drug is studied on a much bigger group of CF patients (this next study will include kids ages 6-11) that will last months/years. At this point they are starting the process of getting the drug registered with the FDA.
Phase 4: If the drug gets to this stage, this is when Gavin will most likely be able to try/use the medication. At this point all CFers will have access to the medication and they will try it out on different mutations to see if there are benefits to those patients as well. This is when the FDA begins registering the drug for approval.
Phase 5: The drug is FDA approved! Many times this is when patients with diseases other than CF try the medication to see if there are benefits with other diseases.
Dr. Laguna (our pulmonologist) told us it really is a
The best way to tell if the meds are working is to do another sweat test. A person without CF would have a test result under 30. The sweat tests results of CF patients have shown to go from 100+ to around 35/40 from just a few WEEKS of taking the new medication, which is nearly "normal."
Again, only THREE-FOUR percent of CFers have this mutation that the medication is geared for (about 300-400 people in the US). We are so so so lucky to be in this small group of patients.
Another drug VX-809 is in the early stages of phase 2. This drug is geared for the mutation Df508 (Gavin's other mutation) which is the most common CF mutation (about 95% of the CF population). Those with Df508 also have cells that create the necessary "stuff" for the cell to function, but unlike G551D (where what's needed is right on the edge of the cell walls) what is needed for the cell to function lies within the center of the cell. The VX-809 drug "pulls" everything to the cell wall, where all it needs is a channel (yep the same kind of channel) to open up allowing their cells to function too. So as you can probably guess, they will also take the VX-770 drug that opens that channel. Does this make sense? Sorry, its complicated for me to understand also and I am doing my best to make it easy to follow without using medical lingo!
Do we know how long it could take for this drug to (hopefully) pass through the third phase? Unfortunetaly, not at this time. But we are told that they are moving as quickly as possible...the FDA is what really slows stuff down (both a good and bad thing!)...especially since this is the first drug of its kind to show such great benefits. If this drug passes it means that many other drugs will get funding and hopefully soon all kinds of CF mutations can be treated in this manner!
The best part of this new medication is that it is taken ORALLY! Pretty much all other meds treating CF at this time are inhaled which takes up a good portion of the day. Gavin already does one hour of therapy a day and he's not on any antibiotics at this point! So, oral drugs don't take up more than 2 seconds of a day...woohoo for this! If this all works out the way we are praying it will, Gavin will be able to live a relatively NORMAL life!
Ok, enough of all the medical talk. It really is just a small part of our life. Anyone up for another video of Gavin giggling? He is really starting to enjoy his toys (and grabs onto them now!). In this video he is laughing at a monkey that Casey got for him. It's the greatest! It plays music and in each hand of the monkey there is something for Gavin to chew/suck on. It's tail has a wire allowing it to wrap around anything...it keeps us from having to constantly retrieve it off the floor :) Sorry its not the best quality, I took it with our digital camera.
Posted by Jen at 10:12 AM
Wednesday, May 27, 2009
Please click here for more info!
Posted by Jen at 3:10 PM
Tuesday, May 26, 2009
For those of you who don't know my dad built our cabin himself (except for the well & foundation) in 1989. We stayed at my grandparent's cabin next door until it was done enough to live in (plywood on the walls). Each weekend we would go up and do a little more work on the cabin. My dad traveled Monday-Friday every week so he made sure we made it up to the cabin every weekend. By the time I was around 12 and my brother was around 10, we had everything done except for small touches like the trim around windows and doors. At that point, my dad realized it was more important to play and enjoy the cabin than it was to finish these minute tasks, so for years they went unfinished. When my dad passed away in '05 we stayed away from the cabin for about a year and a half, it was just too hard to go up there and face all the memories. But when we finally started going up again in the spring/summer of '07 we decided it was time to get everything completed. So now, just like when I was little, we get up there on weekends and finish the work. We are so close now and it's so nice to complete what my dad was not able to.
...but because the weather was so nice we didn't get as much done as we had originally planned. Oh well, it was much more fun to spend time outside! Our friends Lindsey & Jay have a cabin (well it's actually Jay's parents cabin) just four doors down from ours...very small world! Lindsay was my roommate in college who met her now fiancee, Jay, while we were still at UW-Eau Claire. When he came up for my graduation party we got to talking about our cabins and spending time up north. The conversation went something like this...
Jay: Where is your cabin at?
Jen: Oh about 2 hours north of the Twin Cities, a half hour north of Mille Lacs Lake
(we're down to about 100+ different lakes)
Jay: No way! Mine too! It's just south of Aitkin, MN
(now we're down to about 20+ different lakes)
Jen: Huh, so is mine. It's on a small lake called Hanging Kettle just off Hwy 169
Jay: (jaw drops) Umm Hanging Kettle? So is mine. Our cabin is one of the buildings that used to be in the old resort
Jen: (jaw drops even further) Are you kidding me?!? That's just steps away from our cabin! I don't suppose you remember an older guy that used to putz around on his three wheeler talking to all the neighbors? That was my grandpa...
Jay: VIRGIL was your grandpa?!?! That guy used to show up here all the time!
So you think that is small world? It gets even weirder...Jay's mom was Lindsey's third grade teacher in Rochester, MN
Think that's a small world? Now it gets even smaller and weirder...When Casey and I first met working in the same small office at Enterprise in the beginning of '06 we started small talking about where we were from etc. That conversation went something like this...
Jen: So where did you grow up?
Casey: Rochester, Minnesota
Jen: What year did you graduate high school? And which one did you graduate from?
Casey: '98 and Mayo...why?
Jen: I don't suppose you would know a Jay (I'm leaving out last names) or Lindsey?
Casey: Lindsey I don't know but Jay and I grew up together and were pretty good friends, how do you know him?
So now the four of us are great friends that spend time together when we're home in the Twin Cities (we live about 10 mins apart) and when we are up at the cabin :)
But back to the past weekend. The weather was gorgeous, we got Gavin out on a boat for the first time and spent many hours outside playing Ladder Ball (and possibly throwing back a few beers) We didn't bring Gavin out on the speed boat but we did bring him out on Jay's pontoon. We had him in his life jacket which is still a bit big on him and he was NOT a fan! But once we took his life jacket off (shhh please don't tell the DNR!) he was happy and quickly fell asleep on daddy's shoulder.
At some point on this boat trip, Jay started talking about being the first group on the lake to go water skiing. Then I mentioned that we had wetsuits... and CRAP. I just agreed to go waterskiing in the frigid cold water. Please ignore the glowing white legs, they hadn't seen the sun since last summer.
Right before we headed out one other family started pulling young kids on a tube but we were still the first out waterskiing!
When we were on shore we played quite a few games of ladder ball while Gavin hung out with his toys (yes, Mr. Froggy came on the trip) in his stroller. I was one of those kids that collected beanie babies when they were all the rage. My mom had kept them all (I probably have around 50) and now Gavin gets to enjoy them.
For some reason, Gavin decided that he would spit up a ton so he pretty much lived in a bib. We got really tired of having to change his clothes!
In the afternoon it was just warm enough for Gavin to hang out in one of his summer outfits...how cute is this little guy!
Posted by Jen at 8:15 AM
Thursday, May 21, 2009
Casey and I had realized the other day that we hadn't seen them in a week or so and were wondering where they had wandered off to. Then yesterday we figured it out. They had babies....and lots of them. Eleven to be exact. The proud momma was walking them through all of the yards it was too cute! Of course I had to run inside and grab my camera...
Today the weather finally cooled off. The past two days it has been well into the nineties...too hot too fast! We caved and turned on the a/c. We both worried about Gavin getting overheated which is not a good thing with his CF. His body doesn't reabsorb the salt he sweats out so it is very easy for him to get overheated and dehydrated. So we all hung out in t-shirts and shorts (Gavin usually was just in a onesie) and stuck it out til the heat wave passed. As much as I would love for a warm holiday weekend I hope that it doesn't get that warm while we are up north! But when it's warm it's easy to laze around and nap...
Sometimes Gavin seems like such a big boy already! Then there are times when I realize how little he still really is. Times like these....
Seriously. Is that not the cutest little guy ever?!?
Posted by Jen at 6:45 PM
Tuesday, May 19, 2009
Posted by Jen at 9:29 AM
Sunday, May 17, 2009
1. Roll from back to belly
2. Get really proud of himself
3. Cry because he doesn't know what to do
4. Mom/Dad rolls him back over
5. Repeat. Repeat. Repeat :)
Last night he got so tired while we were playing that he started to roll over, stopped on his side and promptly fell asleep
Gavin's other favorite things to do are to fly in the air while Daddy holds him up (this gets him to stop crying nearly everytime)
Gavin also likes to "stand" more than he likes to sit. Once we get him in a sitting position he often pushes himself up into a standing position...pretty strong for such a little guy! His onesie is a bit big on him and hangs down which is why his little legs look so short :) But look at those chunky little things!
We hit up a couple of garage sales on Friday where we got Gavin a few books and I also found a small blanket that had never been opened. It has a froggie for a head and each corner has something to chew on (for teething) or just something soft to hold. Gavin LOVES it! He sucks on the corners and smiles whenever we hold it up for him. He has also started reaching for his toys and often tries to grab onto his new blankie when its out in front of his face.
When he's hanging out on his belly he likes to "talk" to the froggy.
Seriously. He LOVES this new blanket :)
Posted by Jen at 7:21 PM
Friday, May 15, 2009
Thursday, May 14, 2009
Gavin is definitely 100% boy! Considering the fact that he isn't even mobile yet, this kid has a ton of energy! Check out the videos I've posted below to see our little wild child!
We are working on getting a CF fundraiser set up for late June...I don't want to share details until we get everything set up, but it has the potential to raise quite a bit of moolah! But, keep the last weekend in June open :)
Posted by Jen at 12:29 PM
Tuesday, May 12, 2009
(looks so different before the weeds come in!)
View of the neighbors
Mom & Gavin on the dock
Louie got locked in the porch, whoops!
Talking to Daddy
Posted by Jen at 10:30 AM
Monday, May 11, 2009
Posted by Jen at 8:41 AM