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
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
My cousin sent me a card that said, “Wear cool boots, they make you feel like you can handle anything.” This would have been a week for some cool boots! Gav gets so much food at night his body isn’t able to process it all so he is like a little vomit volcano. I feel so bad for him, but he doesn’t seem to be phased by it. It’s a little more work for us – changing his outfits like four times a day, and a lot more cleaning and laundry. Apparently, the vomit volcano thing is “typical”, although I don’t think anything about this whole experience falls under the category of “typical”!
Gavs had his zillion and one shots for his one year check up (his poor little legs are all puffy and swollen). We were very pleased to hear that his head circumference finally falls on the lowest notch of normal – which is… awesome (does anyone use that word anymore?). He is getting closer to being on chart for his height and weight. He looks like a little boy now, for so long it seemed baby baby baby, but now I can see the distinct difference. Even in his mannerisms. He wants his sippy cup and is trying out sucking through straws and wants to be in the thick of things. He is watching his sister like a hawk and is ready to leave mommy to be with the big kids! Still not crawling, but dangerously close and his bottom left tooth is giving him a run for his money! Teething is eternal!
Lauren and I often play a game, “I love you more” and then we list things that we love and tell each other that we love each other more. Example, I love you more than unicorns and bubble gum. We were in the midst of it during our afternoon lunch and it was my turn. As I was looking at my little beauty, I was about to begin when I hear her fake burp. This gives me slight pause and then she holds up her little hand to let me know she has something important to say, “I am going to burp the alphabet, erp A” What????!!!! Where did she learn this, to my knowledge Jay nor I can complete this feat so I have no idea where my baby girl is coming up with this stuff. She has a way to keep you on your toes! She also informed me that she knows that metamorphosis is when caterpillars build a chrysalis and become butterflies. I can thank Baby Einstein for that. She is up to three books now for bedtime story time and we get a new sack of books each time that we go to the library. The library here just hooked up to a whole new network (sweet) and we can find everything online and have it sent here. I’m like a kid in a candy store, ahh the little simple things!
I bought Lauren a booster this week and decided to go with a real simplistic one, just a plain ‘ol booster. Sometimes you look around at all the baby gear and you think, man this is over the top, so I thought I’d scale back. The first day I put her in it she falls asleep and is tilted at a 90 degree angle flopped to the side. My advice is to get one with a back if you are in mid transition of the car seat debacle…this one isn’t going to cut it! Any suggestions out there on a good one?
Take care and let the sunshine baby!
Jill
I’ve sat at my computer probably ten times trying to find the right words to say. The words that could convey how much it means to us to know that Gav won’t have to worry about the financial cost of his disease, and what a relief it is to know that he will never be denied anything because we don’t have the financial weight to back us. Thank you to everyone who was inspired by his journey and donated, volunteered, prayed and/or shared their story with us. It has been a journey, one that will last a lifetime and each component of it will stay with us always!
Thank you to everyone who has helped us get to this point! It means so much to us and to Gav. He has had many blessings in his life, and this is another one! May all good deeds come full circle and may you be equally as blessed and have the pleasure of knowing how blessed you are!
We will throw a celebration during the summer to thank all of you when it’s nice outside and there aren’t so many illnesses to spread! Details to come!
Jill
What a weekend! We all celebrated Gavs birthday on Friday and just relaxed and hung out together. It was so nice to all be in the same place at the same time! Gav is looking a little older, OK OK, maybe not older but bigger. He is tipping the scales at 17 lbs! That, and we have gotten word that we will be getting his previous dialysis machine back! (A newer and much better machine that will allow him and us to sleep much better.) Talk about birthday wishes coming true! Between his new weight and all this snow shoveling, I am going to have arms of steel! (Although, I want to say thank you to all my neighbors who rescued us this weekend with snowplows, we had a small mountain at the end of the driveway!)
Gav is starting to crawl backwards, hasn’t quite figured out the whole forward motion – but it’s fun to watch. It gets him a little hot though, because when he finally gets the drive to do it he ends up further from his goal than before. Pretty soon I imagine that he will be crawling and then the true fun begins! Luckily the house is pretty baby friendly already so we only have a few adjustments to make. Look out world pretty soon he will be on the loose! Now if I carry him, he refuses to be anything but outward facing. He has also developed what Jay and I call floppy feet to throw his temper tantrums and let us know when he is displeased!
Gav is starting to stop eating orally, and I am concerned that we will have to rely solely on his feeding tube. While it’s not the end of the world, since I have gotten quite good at placing it and “little magic hands” Gav has also gotten good at pulling it out, I just don’t want him to lose the ability to self feed and have food aversions. I would like to avoid that whole bag if at all possible, but I can’t argue with the results of the feeding tube. It has made an amazing difference and now it feels like there is no stopping us to get to the 22 lb. marker! Plus, they changed some of his meds so I can leave the tube out during the day and place it in at night to give his cute little face a break! Gav liked touching his birthday cake and licked the frosting once but never put it in his mouth.
I asked Lauren what she thought of this snow this morning and she gave me what Jay and I are now calling a “Laurenism”—-
Me: “What do you think of all this snow?”
Lauren: “You know what I heard.”
Me: “What?”
Lauren: “That Christmas is going to come AGAIN!”
Me: “No hon, Santa only comes once a year and he just came.”
Lauren: “Well, thats not what I heard.”
Me: “Leprechauns will be coming soon, but Santa has the rest of the year off.”
Lauren: “Only Santa can handle this snow, leprechauns are too small.”
She then stormed away in a huff and returned with crossed arms. I was then told that I wasn’t a very good mom because if I was a “good mom” I would just call Santa…and then an argument with a three year old ensued of which I will spare you the details.
Apparently I got a 2 on the Lauren “mom-o-meter” that day, because when the conversation ended I was still “not a very good mom” AND no longer a friend. Are three year olds little teenagers in smaller bodies? Rationalizing with a three year old is not a possibility. Seriously cute, but seriously independent at three!
Well, Gav is getting up from his nap and Lauren is done so I better tend to the kiddos. We feel truly blessed for all that we have in our lives and truly grateful to the doctors, nurses, staff, friends, family and community that have gotten us to where we are now. It is true that it takes a village to raise a child, and Gav is proof of that! May you live each day to the fullest and embrace all those who you love!
Jill
My dearest sweet baby Gavin,
Believe in miracles. You are everything and more than we could have asked for. I look forward to the day when you read this and think that I was being an over protective mom because this disease no longer dictates your life (“mom’s crazy†– I can hear it now).
May you always know how loved and special you are. May you grow to be a man who gives freely and thinks kindly. May you continue to aspire to greatness and not be discouraged with the stumbling blocks (we all fall, get back up son). May you become a thirsty learner and a leader and a man of your word. May you remember how lucky you are and support those less fortunate. Be bold, ask questions and face your life with courage and honor. May you always love with innocence. May you see in yourself what I already see in you at the tender age of one.
If I could climb every mountain for you, take away any pain or hardship and steer you always into the right direction, I would. Your life is still unwritten and there is beauty in that, you determine who you are and we can only guide you on your journey. I can’t promise you perfection, I can’t promise you much of anything, except that I know that we were kissed by an angel twice in our lives, with you and your sister, and that every second that I breathe I love you more than the last breath! That, I promise you, will never change!
Happy Birthday my beautiful, perfect giggly baby boy! This is your year, Double 0 Seven: Mission Possible: Kidney transplant!
XXOOXXX,
Mom
Save Baby Gavin 