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

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

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

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]

We are getting out of here and going home! Gavs a happy talking machine and Lauren wants a tea party! Gavin waved at his docs today, too cute! Happy Thanksgiving!

It’s day 3 and things are looking a little brighter, Gav is up and moving and seems to be doing well without his pain meds. He looks normal again so I am starting to relax some (okay so there is no such thing as relaxing in a hospital, but feel less anxiety for sure). He played with his cousin Annalyse today in the hospital crib and managed to steal her nuk right out of her mouth. You would have thought that he won a gold medal in successfully swiping the nuk because he was grinning from ear to ear, he just kept taking it out and putting it back in – Annalyse on the other hand did not appreciate the gesture!

Thanks Julie for calling and keeping me optimistic (I hope that the small fire has been extinguished), sometimes you just need a little nudge to keep going. Jay always tells me that it’s a marathon, not a sprint, at first I thought it was catchy, but now it drives me somewhat crazy, but it’s 100% true. Can’t let anything knock you down too long. I heard a quote, life is not about how many breaths you take but how many moments take your breath away. He does take my breath away. I could just kiss his dialysis machine and whoever invented it. It gives him life, all this, all these battles are so that he can live, what an innate survival instinct babies come with—now it’s our job to make sure that his life and world are worth it! Hope you are all having fun, still no expected date of release, but we will see, I hope not too much longer! Hugs, Jill

Day 2 at the hospital and things are looking a little more complicated than we hoped. They think that his right kidney may have gotten bruised (which is apparently common) so we may be in here a little longer than my overly optimistic prediction of two days. Today he woke up and looked like the stay puff marshmallow man so we just hooked him back up to his machine.

Sometimes because he looks so normal, you play this mind game with yourself, maybe the doctors are wrong, maybe his kidneys started to work, and with every surgery, maybe this will be what fixes everything, and it will all go back to normal—-but seeing him today made me realize all over again how sick he is.

I know that I have to come to terms with all this, and for the most part, most days I am, but it just keeps happening. It’s still happening, over and over, and when your kid is sick, you just can’t function. Even when Lauren is sick, it’s like the world stops until she is better. And THIS is like a whole new level of sick. There are always like a million doctors around and none of them can do a darn thing to make him better, to fix him. I can’t wait until this hospital stay is over, and we get our happy, giggly, curious baby boy back. Time stands still here, it’s like it sucks out the world and you exist in this new hospital world, it’s weird.

Anyway, I am going to get back to Gavs, hopefully I will find some time to sneak away and give some more updates. Your comments and guestbook entries really help liven up our spirits. It helps to know there are an army of people out there thinking of him and wishing him well. I think Charlie Brown’s Thanksgiving is on, so Gavs may get his first dose of Charlie Brown!

Gavin is out of surgery and doing good, his pain seems much better controlled today then on Wednesday and he’s talking and just ate. Surgery was a success so now we will wait and see how everything plays itself out. We are hoping to be out of here in about two days so let’s cross our fingers that all goes as planned! Thanks for all the good thoughts!