Gavin Discharged…Cause of Illness Still a Mystery

We got home Saturday evening with Gavin, his problems are still a mystery…they believe that they have ruled out leukemia and cancer (thank god!) but they are no further on figuring out what is wrong. So instead of keeping us holed up in the cell, I mean hospital room, they have discharged us in hopes that he gets better while they continue to investigate and wait to get some lab results back.

We are all exhausted and a little scared, but it feels good to go outside and feel the breeze and see the kids play with each other. Hopefully we will figure this out soon!


Thank You To UW Madison Legal and Medical Students

A unique competition between future doctors and lawyers at the University of Wisconsin, Madison sparked a generous $1,100 donation to sweet baby Gavin’s campaign fund.

Initially, students from each major voted on a specific fundraising project they wished to raise money for. Next, students organized their own fundraising events. Whichever major raised the most funds collected all the monies.

Happily for baby Gavin, the kind UW Law Students voted his fundraising campaign as their special project and then went on to best the Medical Students – hence, all the monies were awarded in honor of this precious baby.

Thank you all, so very much, for your tremendous hard work, your humanity and advocacy. Thank you for giving sweet baby Gavin a wonderful story to dream on. Thank you all for caring.

Thank You to Linda Jerman for Community Day Contribution

A warm thank you to our undispensable and gracious soul, Linda A. Jerman – a very special “Community Day” Event Coordinator for Elder-Beerman in West Bend.

Making a difference, together, is the theme behind “Community Day” sponsored by the Bon-Ton, Elder-Beerman, Bergner’s, Boston Store, Carson Pirie Scott, Herberger’s, Younkers and Parisian Stores.

For a second time this wonderful event helped us raise money for sweet baby Gavin’s fund raising campaign; and on this occasion $155 was donated.

Our warmest thanks to all of you for believing in the glory and promise of this spirited and miraculous dear baby – your “difference” will continually contribute to his sweet, “Once upon a time…

Gav Back In Hospital…Fevers Continue, Will Have CT Scan

Gav is back in the hospital, we can’t seem to pinpoint the cause for his fevers, so they have to do a CT Scan to check him out. He will be sedated and checked to see if there is any problems with other major organs. It’s worrisome, the dye that they use is very hard on the kidneys, and his white cell count is climbing in the wrong direction. We’re hoping to find some more answers soon!


Life is a Delicate Balance of Letting Go and Hanging On…

I feel that life is a delicate balance of letting go and hanging on. I had always thought about the meaning of life, until I decided that for me what my “meaning” is —to leave it a better place than I found it. I feel as a parent, as I look at my children and as I tuck them into fuzzy blankets and horse-filled dreams, content with my life knowing that they are what I will leave behind me to make this world a better place.

When I was in the hospital, I had an intern tell me how sad they thought Gavin’s story was. While his life has brought moments of great sadness and earth-shattering fear at times, his story is anything but sad. Gavin’s story is sprinkled with miracles, hope, faith, love, courage and strength. So while he has faced difficult odds, his story, to me is not sad, but just a foreshadowing of the phenomenal man that he shall one day become. He has taught me to take a bite out of life and clamp on kicking and screaming and let go of the fears and doubts that can circle and swallow you.

He is my daily reminder that the things that you hold dear are not promised, so you hang onto your moment and you let go of the pressing fear and you just be. You grasp tightly to the laugh-out-loud moments and let go of the lump-in-your-throat cries. You strive for life experiences more than material comforts.

Gav, since being released from the hospital, has taken his stretch with freedom quite ferociously. He is now doing a form of a baby snap, saying “dog”, and getting his crawl on. He is a little sporadic with the crawl, but as I have noticed, does quite well at getting to where he needs to be when mommy steps away (mommy the enabler)!

We take in another sample of fluid in about five days so hopefully it will show that the antibiotics are knocking out the white cells. He seems to be feeling quite a bit better!

Lauren is happy to have her family back together, she was singing of course as we all walked together to the hospital elevator! This change in weather was embraced with open arms, lots of swinging and a good bike race. Let the sandboxes be opened and the sidewalk chalking begin!

My latest Lulu favorites are her new attempts at placing adult lingo that she has heard into her own world. She told her daddy the other day to “stop it off” instead of “knock it off”. When she heard that two of her local buddies were getting new playgrounds she said, “they haven’t had new playgrounds in years!” (Imagine eyes doubling in size in playground day dreams delight.) Mind you, one of the children is almost two and the other almost three, but seriously, it has been YEARS.

And of course I love her newest addiction of lollipops and movie nights. (I thought today was Friday so she asks if I can make it movie night. I told her, “Today is Monday, Lulu – movie night isn’t until Friday”.) Her little curls are bouncing all over the place as she awaits the arrival of her friends and playgrounds!

Jay and I are hanging in there, it’s hard and stressful to maintain a lifestyle with all these new cares, but just as those cares before, these will become normal too. The biggest kick is the changing of the feeding solution every four hours, that is a real stretch for sleep and it takes about a good 45 minutes to get all of his antibiotics injected into the dialysate. As always though, we can’t complain, we have our babies so life is good! Well, I better enjoy my next three hours of sleep, I told Jay I’d take the first shift! Hope this finds you all enjoying Spring with the Robin’s return!


Gavin Released from Hospital…Fighting Peritonitis with Antibiotics

We are home! We are delighted, Gavin pulled Lauren in and gave her the biggest hug and then when she let go he pulled her back in again, it almost made me cry. When we got out of the hospital he was doing his happy hands and kicking his feet! It felt great to breathe fresh air!

Gav ended up getting peritonitis. Peritonitis is an infection of the area where we do his dialysis. We were very lucky to have caught it extremely early on the onset so it did not destroy his peritinium (a lining in your belly where his dialysis filters out his waste in the dialysis). We have been released to go home and do 12 more days of injecting medications into his dialysis bags, but he is feeling much better and in good spirits.

As for us, this is short and sweet because we just want to hang out and breathe! Home sweet home! Hope you all are doing well! We appreciate all the love and support!


Gavin Admitted to Hospital Today…Fighting Infection, Elevated White Count

We went in for Gav’s clinic today and his white blood count is high. He has an infection and they are working on trying to figure out the cause. He has been admitted to the hospital for the next several days at least they believe. Ugh! I have hospital head already!

He has had a long day – two blood draws, an IV, several fluid draws and just constant “let me check em’s”. He was finally too exhausted to fight any longer after the final IV that hangs in his little arm was put in, and so he nodded off. It just reminded me what a fighter he is and how tough these babes are.

He is so smart. I hate to hear him scream and see him wriggle, but at least I know that he is well enough to scream and fight which is a good thing. Anytime a stethoscope came near him, he batted it away. I couldn’t help but laugh, he is normally such a good natured baby. But this baby has had enough today and was not playing nice. The nurses in the NICU told us that the feisty ones are the ones who make it! Hopefully they will be able to pinpoint his infection and have something to knock it out.

Say a prayer for him and hug your little ones extra tight tonight. I wish we were all at home enjoying some hot chocolate and a good fire and book. I, of course, even wish more that we were under a palm tree drinking out of coconut glasses splashing in the waves…but I will only ask for one miracle at a time.

We will keep you posted on Gav’s progress through his website. Thank you for your prayers.


Gavs Tipping the Scales at 18 Pounds…First Official Meeting with Transplant Team Expected Soon

The Brewers are undefeated (we better hurry and post this, it’s like the weather, things change in the blink of an eye here). Jay’s Cubbies starting the year off with a disappointment. Between the two of us, me the Brewers fan and Jay the Cubs fan we must be optimists!

Things here have been busy busy busy but great! Gav is starting to forward crawl, once again, “for the love of a ball” and is saying bubbles, mama and a ball. He also can’t resist a good “Dat off”, especially when he and his sister scream it as loud as they can. He has also managed to pull himself up to his knees. This is a particularly fun trick for him to perform at three a.m. when he shakes the crib to make sure we are aware that he needs some attention.

He is tipping the scales at 18 lbs and he looks like a little butterball with short little legs, we love to rub his little budha belly. It’s good that he is stretching, since an adult kidney is about the size of your fist so he needs room for it. They will transplant the kidney into his tummy. He is such a little ham! Anyone that walks by, he gives them a killer smile and he wants all the ladies to hold him. I swear he poses for pictures! My grandma is calling him Hercules!

We are supposed to hear from the transplant team next week sometime for the first official meeting. I stalked them today since I hadn’t heard anything. You can’t dangle transplant thoughts out there to me. It’s like putting a steak in front of a lion and asking him to sit, not happening. We have his clinic next week so we will know more there as well, but we are very pleased medically with his care, he is well maintained so we feel very lucky!

Lulu is out there doing her usual Lulu thang, she’s just plain funny. Tonight she decided she wanted to be a princess so she put on her princess jammies (poof, then she was a princess). I thought to myself wouldn’t that be great, to just pick something that you want to be and in your mind it happens, “I want to fly planes, poof I’m now a pilot!” Aren’t their minds great? She also likes to be referred to as Dr. Lauren since she has decided to become a doctor when she grows up. She met a female pediatrician the other week and thought that was pretty cool (even though she didn’t have brown curly hair like Lauren).

We’re trying to sell her on Easter to take some of the heat off the Christmas obsession, but we did have to still get one Christmas video from the library this week. Today she decided that she should have a horse (poof). I shimmied our way out of that one by saying that she is not old enough for a horse yet, and I suggested that maybe she could have a fish, but she’d have to run it by daddy (make him the heavy on the no horse in the backyard and or room thing). Parenting is the ultimate sales job! When else do you try to swap a horse for a fish?

Happy Easter everyone!