Keep On Going…”Gavinator” at 15 pounds, 14 ounces!

“When you are going through hell…keep on going”, I believe it was Churchill who said that, and we made it. It was when I was grocery shopping, trying to figure out which was hotter the mild or medium salsa, when I realized that it’s all what you make of it. This of course was when I realized I was upset at the label makers of a salsa company (talk about sweating the small stuff, but seriously, what was wrong with mild and hot—it made it easier—what is medium all about?), but it all gives you perspective. We are still in a battle for a different home dialysis machine, but as Jay reminds me “control the controllables” (we can see who is the level headed one is here…me???).

Gavin seems to be doing so much better with the added nutrition at night. So much so, that it makes the night time easier and the added food means he’s not waking up. So we are getting a full night’s sleep, except when his dialysis machine alarms. Somebody should really tell you that after you have kids you’ll never sleep through the night ever again, it should be in like a pregnancy pamphlet.

I’ve gotten much better with the feeding tube and have learned some tricks to try to keep it in longer. He is also teetering on 16 lbs (15 lbs 14 oz)!!!!!! You look at him and you figure he’s got to be like twenty pounds with those cheeks and that belly, but not quite yet. Soon we will be at 22 pounds, and then there is no stopping us. We most definitely will be celebrating when that happens! I can’t believe in just shy of a week, he’s gained so much weight. I am so enthused by that!

He also seems to be moving so much more, even he is impressed by himself and has taken to clapping for himself once he accomplishes a new feat! He’s all about “Roly Poly” and bubbles and has so many more opinions now, mostly, “let me at ‘em”. He seems so much more age appropriate, no longer an infant but a little boy. I can’t believe he is almost one!

Lauren has learned the words “suction” and “flabbergasted” and I love making her use them. It’s so funny to hear them come out of her mouth. She has also learned how to spell her name in “sing song” so it’s pretty cute. We are starting to try to teach “the Gavinator” (as she likes to call him now) how to sign.

I signed Lulu up for four year old kindergarten this week for the upcoming school year…I can’t believe that she is going to go to school. Now I know why you see all the moms peering through windows trying to get a glimpse of their babies. She is such a proud big sister that she insists that we write her name and then also add “Big Sissy”. They both helped me make some Valentine cupcakes this week, and Gav loves the beater just like his sissy!

Hope this finds you all well! Something about pink, red and hearts that has to bring a smile to your face!

Jill

What a Morning, What a Delight…Thank You Chilton Knights of Columbus!

”’When you wake up in the morning, Pooh,’ said Piglet at last, ‘what’s the first thing you say to yourself?’ ‘What’s for breakfast?’ said Pooh. ‘What do you say, Piglet?’ ‘I say, I wonder what’s going to happen exciting today?’ said Piglet. Pooh nodded thoughtfully. ‘It’s the same thing,’ he said.”
A. A. Milne, ‘The House at Pooh Corner’

The smell of coffee mingled with the flavor of eggs, sausages, ham, hash browns, pancakes, and hobnobbed with a sundry of sweet rolls, orange juice, milk, and pitchers of ice water at the Chilton Eagle’s Club last Sunday, January 14th, as the Chilton Council (Calumet 2556) Knights of Columbus put on their Pancake Breakfast Fundraiser for sweet baby Gavin. Over three hundred wonderfully kind neighbors turned out to support our darling baby.

Thank you all so very much for participating in the task of saving the day and the night for sweet baby Gavin. Your warmth was overwhelming!

Pennies From…..

For over two centuries the penny’s design has symbolized the spirit of the nation, but never more nobly than at the Lake Mills Middle School. After completing their penny push fundraiser, from January 8th – January 17th, Art Instructor Judy Schwecke, along with her fifteen, 8th grade advisory students have turned thousands of idle pennies into real dollars and happily contributed their gift of $655.10 to baby Gavin’s campaign.

Our appreciation for all of your kindness and enthusiasm is boundless. Your spirit of generosity inspires, truly, for as Margaret Thatcher so eloquently stated, “Pennies do not come from heaven. They have to be earned here on earth.”

Thank you, each of you, for bringing change to the world of sweet baby Gavin. Thank you for your humanity. Your hearts are all quite special and we remain endlessly grateful.

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!

Jill

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!

Jill

[mygal=gavin-christmas]

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.