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!
Jill
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!
Jill
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!
Jill
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.
Jill
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!
Jill
At Tradesmen International, they work exceptionally hard as construction recruiters and construction employers to provide contractors and industrial companies America’s best skilled craftsmen.
But that isn’t all they provide.
They also provided an exceptionally heartwarming donation for sweet baby Gavin’s fundraising campaign in the amount of $5000.
Thank you Tradesmen International for helping to build a future this precious baby never dreamed he could have. Your gracious empathy will carry him onto and into many wonderful little-boy adventures and we are so grateful!
An Irish Blessing
“Leprechauns, castles, good luck and laughter.
Lullabies, dreams and love ever after…
Sweet baby Gavin is lucky indeed for he has found a pot of gold at the end of the Student Nursing Association and tender-hearted Carroll College leprechauns’ rainbows. With compassion and grace they have used their healing hands to embrace his precious life, and to date, have already raised $1,374.81 on his behalf. Thank you all so very much for sharing your warm hearts – we are grateful!
May you always walk in sunshine
May you never want for more.
May Irish angels rest their wings right beside your door.”
Here’s a video of Gavy enjoying his birthday cake!
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Lauren and Gavin took a trip to the zoo and played in the snow. Here are some photos.
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Gav threw up blood this past weekend. He has also started to throw up when he is sleeping. Luckily, Jay and I heard him and were able to get in there and get him on his side. It has been scary. I feel like I can’t sleep for fear I may miss something. He is just being pushed so hard and his little body…I just feel for him. It’s a hard road to watch, let alone travel. He’s now our littlest roommate so we can have viewage 24/7.
We’ve also had to increase his injections for his blood count to every four days. So he gets his daily growth hormone and now he gets his other injection bi-weekly. He cries the instant he sees me start prepping the needles.
On the plus side he is still gaining weight, which is what is bringing us closer to transplant. I have to just keep in mind that transplant is our ultimate goal. We NEED to do this for him to survive. There are no other options here, this is the only way.
In fact, the most exciting news to date is that they are going to start working me up to see if I can donate my kidney to Gav. I am very excited, now I feel like we are finally honing in on transplant.
We have been lucky, things for Gavin could have been a lot worse. He could be experiencing so much more pain, but it’s hard to accept that he has to experience even an ounce of pain. It’s really a battle to inflict all of this on your child when he looks and seems to be fine.
Gav is beginning to sign some words. OK, so not the ones that I have been working on teaching him (and the ones that Lauren reminds me to do when I forget). But he’s signing none the less. He hits his head when he is excited and wants something (so much for pointing and/or ‘more’). When he is hungry instead of signing ‘eat’ he climbs up and starts eating my hair (gross). So all in all he’s not exactly doing what I am training him to do, but he’s signing none the less and getting his point across(: He is also now able to put himself from being on his tummy into a sitting position and is quite pleased with himself.
Lauren has started to scrub in and wear her mask at night when it is time to hook Gav up. It’s very endearing that she wants to be involved in her brother’s treatment. Also a little sad. I know when she’s happy when she’s singing her songs. She is the little singer in the house.
We try to make things normal, but I can’t help but wonder what all of this does to her. I just pray that she and Gavin don’t remember all this. When he throws up, she comes and gives him a little kiss on his noggin and tells him that she loves him. It’s been a rough adjustment for her with him getting sick so much. Things aren’t as “normal” as they were and with all the added cleaning and laundry it leaves less time for me to have one on one time with her. And I am admittedly not as calm as I was before. Luckily, she has her Polly Pockets and she escapes into their imaginary world.
Thursday was nice, as we managed to get in a good snowman build before all the snow melted (no disappointment there)! Lauren reminded me of how much fun it is to step on a little panel of ice and watch it crack. She had fun eating the snow (gave firm warning: only white snow) and the delight of putting together a snowman’s face (it was hard for her to give up the baby carrot because that’s what horses eat and she’d really like to just eat it too, please please please…okay).
When the snow melted, we raced boats with the neighborhood kids in the streets. It was so sweet to watch these little aluminum foil rafts streaming their way to the gutter and getting swiped back up to safety just in time.
We also took advantage of the one day heat fest (hey anything above 60 right now is like tropical) and went to the zoo. It was so much fun. Lauren is a regular zoo expert since she and her Grams go weekly and her favorite was the new giraffe exhibit (it is really amazing, you are so close to them). Gav started clapping when he saw “Lipz and Tommy” the orangutans. It was hilarious!
Children are really awe inspiring. The way they view the world, the way they love and laugh and take each moment in. They are the reason that hope is eternal and love is ever lasting! What a delight!
Jill
Save Baby Gavin 