Feeding Tube Scare…Become An Organ Donor

A sleepless night. Two days ago Gavin pulled out his feeding tube in the middle of the night so we were in the emergency room, (at 3 a.m. on country roads in the middle of the snow, ugh!) making sure he didn’t aspirate on it. He was fine— thank God, but now it has opened up a whole new fear of supplementing him at night. I am so exhausted that I am dizzy, yet I can’t sleep through all the alarms and added stress from all these changes and the fear of him drowning. Putting an ng tube in your own son is very scary and the cries don’t leave you, they just echo in your ears. It took me three times and with each attempt I hated my ineptness at being such a novice.

Lauren told me tonight that she didn’t want Gavin to be sick anymore. It was really hard since most of the time she doesn’t see him as “sick”, just her regular ol’ brother. With all the changes she knows that something isn’t right because now we are outside of what used to be the “norm” to her, plus a little insane and highly stressed. This disease makes me so mad at times. It’s like this abstract thing without a face that just keeps knocking you down and there is nobody that you can yell at or be mad at, it just is, and it doesn’t stop — you can’t fight it — just counter it and it never goes away. I can’t wait for transplant.

Madison feels like in not intervening sooner with the feeding tube that we are set back another six months from transplant, putting us not to transplant until this time next year. Although I will do this as long as we need to, the thought of Gavin being sick for another year and of all this is just so overwhelming — it was like a sucker punch to the face.

At this point I want to put out a shameless plug for all of you to become donors. There are 94,000 people waiting for transplant and only a little over 20,000 people get transplanted every year. These people on the list, they are someone’s mom, dad, child, brother, sister, wives and husbands. To learn more about becoming a donor go to wisdonornetwork.com or call the Wisconsin Donor Network at 414-805-2024. There are a lot of myths about being a donor and if you have any questions or fears they can answer them for you. Within the next six months they will begin testing me to make sure that I am a match for Gavin (we know that I am a blood match but Jay isn’t). I can’t wait, I’ve never wanted to lose an organ so bad. 🙂

Well I am going to try to get some sleep. We wanted to go to the Jim Gill concert this week, but I don’t think that Gavs will make it, there are a lot of funky winter cold things going around and that makes it really hard for Gavin to breathe against the fluid, but maybe Lauren will, she would LOVE it. We are still trying to find the fine line of living a life on dialysis with an immune compromised son! Hope this finds you all in better spirits than I, as they say this too shall pass!


Thank You ‘KTI Morning Show…Promoting Gavin’s Fundraisers

A big thank you to the team at WKTI for helping us promote Gavin’s upcoming fundraisers on their morning program. Our very own Samantha Christianasen called into the show on January 10th and spoke with Gene Mueller, Amy Taylor, and Gino Salomone about Gavin and the upcoming Jim Gill children’s concert on behalf of Gavin.

To view Gene Mueller’s post about Gavin on their website, click here.

Gavs Is “In It To Win It”…New Doctors, New Dialysis Machine, New Feeding Tube

We won the trifecta… if only it wasn’t for sinus infections. Lauren (who apparently has “crocodiles in her throat and butterflies in her ears” was her pediatrician’s official diagnosis, which she loved), Gavs, and I are all on some antibiotics to finally shake this forever cold. No wonder why it lingered for eternity (Jay gets to take care of us, poor guy).

We’ve had a lot of big changes so Jay and I have taken a mental sanity break (meaning we are a touch insane at the moment, because who wants to stay sane for too long). We have switched Gavin’s nephrologists (fancy word for kidney docs) and we are on a new machine which Jay and I despise. We look at his old machine with such affection. I wouldn’t be surprised if I would wake up one night and see the machine sleeping next to us in the bed (next to Lauren of course who always manages to tip toe in at some point in the night). We miss it so and it has only been two days. I am trying to get this new hospital to come around, so there is still hope. We will figure it out some way. I could get into the whole argument, but really it’s just too frustrating. I miss our old staff, you develop some unhealthy attachments to his doctors and nurses…so it has been a big change, a hard change, but a good change we believe.

Anyway, onto more important things…Gavin has a new accessory, his feeding tube. The down side is, well there are a lot especially because you can’t see all of his sweet little face, but the upside is that he doesn’t have to taste that yucky medicine so much throughout the day, and he doesn’t seem to mind it too much. I get to play doctor with the stethoscope to make sure the tube is in right three times a day, so he doesn’t drown by having food go into his lungs instead of his stomach—so that is pretty terrifying. Since he gets his supplemental feeds at night, it’s making sleep a little tougher. We have come full circle on his nutrition, so we will see if we start getting some weight gain. Although I wish he didn’t have to go through this, the feeding tube is a beautiful thing since it will get us to transplant hopefully sooner! He has totally fallen off the growth chart so it was time to intervene on his behalf. It’s a sad reminder of his illness. It’s so easy to imagine all this stuff away when you look at him…it just seems like he is so healthy, it’s such a mind game! Even Gray’s Anatomy hasn’t made me feel better this week, which usually cures all things bad in this world. McDreamy should be a nephrologist in Wisconsin.

Gavin is so active now, all squirmy wormy all over the place. He wants to be in it to win it and follows his sister like a hawk. Lauren on the other hand is following me like a hawk, so I try to keep my insane moments to a minimum around her because she just picks up on everything. Today I was ready to, well you don’t want to know what I really wanted to do to the blood pressure machine, and Lauren was telling her Grams about that naughty blood pressure machine later that night. Three year olds see and tell everything, it’s always interesting to hear what comes out of her mouth. Gavin, too, is very interested in all things that make noise. So it’s fun to watch his reactions now. You can so tell he is past the baby stage, and is into the toddler mind set. I can’t believe that he is going to be a year old soon. How we have been blessed, so many great things to come ahead as well!

Hope this finds you all well! Big Hugs and keep having fun! Once I find the camera I’ll post a picture of Gavs new accessory, but it’s MIA so here are some Christmas shots that got downloaded prior to its getting misplaced!



Thank you Kurt Lakatos…Seminars at Krav Maga-Milwaukee Net $1100 for Gavin!

Kurt Lakatos, the owner of Krav Maga-Milwaukee, organized and conducted two seminars on Saturday, January 6th with all proceeds going to Gavin. Kurt, together with the other instructors, John Urbanek (Krav Maga-Milwaukee) and Ryan Atkins (Crossfit Racine), raised $1,100 for Gavin. Thank you to everyone involved for making this event informative, fun, and successful.

A special thank you to Erik Richardson for donating his time and talents to create the flyer for this event.

Kurt also has a cannister for Gavin at his studio with students donating money on Gavin’s behalf. Thank you to all of the students at Krav Maga who have donated to Gavin’s cannister campaign, and a special thank you to Chuck Forsyth for donating $100.

Thank you, Kurt, for being so supportive of Gavin and his cause. We are so lucky to have you as part of our team.

Shop at Pick ‘n Save and Earn Money for Gavin!

Gavin is now officially part of the Pick ‘n Save WE CARE program.

This is how the WE CARE program works. Every time you shop at any Pick ‘n Save store in Wisconsin and use your Advantage Plus Savers Card at a register (this does not include service desk purchases), Gavin’s fund will receive a cash rebate which is distributed every three months. The cash rebate amount will be a percentage of the total amount of WE CARE dollars that Pick ‘n Save has contributed. The more you use your Advantage Plus Savers Card, the larger percentage of total WE CARE contribution Gavin’s fund will receive.

Here are the steps to take advantage of this program and help Gavin:

  • Visit any Wisconsin Pick ‘n Save.
  • Apply at the service desk for an Advantage Plus Savers Card.
  • If you own an Advantage Plus Savers Card, you can assign/reassign the charity organization for the WE CARE program at the service desk.
  • Assign charity organization #129110 (COTA Children’s Organ Transplant Association – Gavin Winslow) to your Advantage Plus Savers Card for the WE CARE program.

Please consider taking just a few minutes to apply for a Pick ‘n Save Advantage Plus Savers Card and assign Gavin’s fund as your WE CARE charity. If you are the current owner of a Pick ‘n Save Advantage Plus Savers Card, please consider reassigning from your current charity to Gavin’s fund for the WE CARE program. Just a few minutes of your time could mean all the difference in saving Gavin’s life.

Reminder: Purchase Tickets for Children’s Concert on January 21st

Please tell your friends and family about the wonderful children’s concert on Gavin’s behalf that will take place on Sunday, January 21st. We need your help making this a successful event.

A Concert of Music and Play with Jim Gill
Sunday, January 21, 2007
3:30 pm (doors open at 3:15 pm)
Sheraton Brookfield Hotel in the Brookfield Ball Room
Advance Tickets $10 each, $12 each at the door (under 1 year free)

To purchase tickets by mail, please call Samantha at 262-548-0614

To purchase tickets online using a credit card, please click the ADD TO CART button below. Once you have ordered, please print your PayPal confirmation e-mail and bring it to the concert to verify your ticket purchase.

To listen to Jim’s latest CD, please click here

Thank you Katherine and Jacqueline Vo

Once upon a time, two very pretty and special young sisters, 8-year-old Katherine and 10-year-old Jacqueline Vo, like in a fairy-tale, found a way to spin straw into gold for sweet baby Gavin. Both girls filled coffee mugs with candy and then requested donations for them around the Twin Cities. Together they raised over $600 for baby Gavin’s campaign.

Thank you so very much Katherine and Jacqueline, we are deeply grateful. May you enjoy many “happily ever afters.”

Press Release: “Bowlin’ for Gavin” Bowl-a-thon, Sunday January 28th

Greenfield, WI – A fun, family-friendly event and great way to get friends together will be held to raise funds in honor of Gavin Winslow, who is in need of multiple kidney transplants.

“Bowlin’ for Gavin” will take place on Sunday, January 28, 2007 from l:00 p.m. to 5:00 p.m. at Classic Lanes Bowling Alley at 5404 W. Layton Avenue, Greenfield, WI. Cost to participate is $10 for adults and $5 for children under ten, which includes three games of bowling and shoe rental. Tickets may be purchased at the check-in table at the door on the day of the event. Bumper bowling will also be available for the children, and silent auction items will be on display for bid from a variety of vendors. Pizza and beverages will also be available to purchase.

To view the entire press release, please click here.

You will need Adobe Acrobat Reader to view this file, please download the latest version here.

Toy Firetruck Auction for Gavin

The Lake Mills Fire Department is hosting a spaghetti dinner. The dinner will be held from 4:00 p.m. to 7:00 p.m. on Saturday, January 20th at the Lake Mills Fire Department. For driving directions, click here.

Two toy firetrucks will be auctioned, with all of those proceeds going to Gavin.

A bounce house, obstacle course, and a cake walk are some of the activities planned for children attending the event.

Many thanks to the Lake Mills Fire Department and Angie Hallmark for their help with the auction for Gavin.