We are once again sick, this should not seriously surprise anyone, it seems to be a constant theme (slightly dejected sigh insert here). It needs to get warm. Gav is at 100 temp wise and Lulu at 99.8 and I’m not talking vacation spots. Seriously spring: where are you? I long for open windows and a good day at the park. We must be masochists living in Wisconsin. The kids however are living the dream per usual…

Lauren’s prince did come, and his name is daddy. She is all about being with her dad right now. It seems that she enjoys keeping secrets (although she can keep them for a total of three minutes and that’s with hands covering mouth) She is three going on thirteen and I am not sure if she breathes or just has some strong super kid power to talk talk talk! How is it that she has more energy than me even when she has a cold? She truly amazes me. Lauren swears that Gavin told her that he wanted a dog for his birthday. I told her a dog will have to wait until we got a fence and she went downstairs, grabbed a toy hammer and said she and her dad (go figure) could build one. Anyone who knows Jay (bless his heart) knows this is not possible (finance guy, not handy guy), but this just reinforces the daddy love. Her next plan of attack was pet napping the neighbor’s tiny dog. I then informed her stealing dogs is frowned upon and not good for neighborhood relations. Don’t worry; I will check her closets nightly if I hear strange noises.

Gav is doing his own bit of talking, quite a bit (especially right around time for him to go to sleep). Jabber jabber jabber—- giggle giggle giggle.

I looked at the COTA website today at all the other kids waiting for transplant and checked out all their websites. Everyone’s story is different and heartwarming. It’s amazing the power and strength of a child. They just have you wrapped around their little digits!

Gav has quite the cold, and I am now convinced that every time I take him to the grocery store he gets sick. Apparently there must be a special on it in isle 6. We had a blockage from inside the ng tube this week so he has been flying high without the tube the last two nights. This is good for him since it irritates the bejesus out of him and lets him clear up that congestion. Bad for me because he is not being constantly fed, he is constantly waking up looking to be fed. Of course there is that pesky weight issue, down down down instead of up up up!

Researchers at Wake Forest University have found that bladders grown from patients’ own cells have been successfully transplanted and work. This shows that regenerative medicine, cell therapy, and cell research could one day be a solution for people who need transplants, like Gavin. To read more, click here.

It is so amazing to me to think that they could transplant Gavin with his own grown kidney some day, maybe even when he needs his second transplant. That would mean no anti-rejection meds, no worrying about kidney failure or acute rejection. He could live a completely normal life (of course no mother thinks their child is going to live a normal life, let’s say extraordinary!). Support regenerative medicine, cell therapy, and stem cell research! This could be your child some day or someone you know. If they can find a cure for the love of all things, let them find it!

Speaking of, for the love of juice Gav will sacrifice almost anything, even his mommy. He did his first push off of me (like I had baby repellent on) when he saw his sweet juice sippy cup coming. He rubs it lovingly, ode to juice… “I love thee, I love thee with a love that shall not die til the sun grows cold or the stars grow old.” (Shakespeare)

Just a quick Happy 90th Birthday to Jay’s Grandma Rose, we love you! Sorry we missed your party, but we are thinking of you and sending baby kisses via air mail!

Jill

“Of course I’ve changed, I’m coming home from war”. I heard that last night as I was driving back home on the radio and it made me reflect on where I was at in my life. Although I smile from ‘son’ up to ‘son’ down, I often feel like this is still a battleground. I can list on my hands the moments in my life that have defined who I am. There are the usual: graduation, marriage, kids and then there were the two that shook me.

When I first stepped into an inner city classroom of 1st graders, I was amazed that only fifteen minutes from my house six year old kids and their families lived lives of complete poverty. That we still had a long way to go for equality and education. That although kids are kids with the same BIG hearts- life isn’t always so bright or fair. I can remember every child that I taught, and at times it seemed like an uphill battle, but like one teacher told me “when you teach them to read, nobody can take that away from them”. It gave me some comfort that in some way I was doing something to improve their quality of life. It can’t be explained in words, but it changed me, how I viewed life and my purpose here.

The second was being faced with Gavin’s mortality at his birth and thereafter. Although we wake up every day and try to get normalcy, things are not yet normal. You can’t go through this and remain unchanged, of course it has changed me. The comfort that I have is knowing that each night as I lie Lauren and Gavin to sleep that they know how much they are loved. But coming to the realization that you can’t always protect your child from everything is hard to swallow. You would gladly die for your child, but what do you do when that is not enough? Life is fragile. I am still transitioning into the stage where everything is okay, we still are as a family still looking for the balance. Some days are better than others. Such is life and love.

Lauren is having fun per usual and has a new favorite thing, Nerds candy. Nerds reminds me of hanging out and watching basketball games with my family when I was little, so I have to laugh when her little eyes light up at the sight of the mini Nerds box. Candy to kids is better than gold. She is now a little girl and not a toddler, it’s funny how they seem to grow every night. She is down with this ground hog concept and in very interested to see if that silly Phil is going to see his shadow or not (more winter, ugh!) She helped me shovel for like three seconds before deciding that it was freezing outside and was much better off inside with daddy and a hot cup of hot cocoa.

Gav is now becoming a little stunt man! Babies are super flexible, I can’t believe the way this kid can bend, especially if he’s trying to grab at some of Lauren’s toys. He, of course, is attracted to all things little and is getting a huge kick out of “Baby Alive”. It’s pretty cute, it’s like his little baby friend that talks and he can touch her gigantic eyeballs and pull her hair and all she does is laugh (unlike Lauren who does not appreciate a good hair pull). His sense of humor is really starting to kick in and now has some pretty full blown giggle fits. We have seen 16 lbs on the scale (he’s down a bit again), but it sure felt great to see that number on there and know we are moving in the right direction. We should hear more on his machine this week so keep your fingers crossed. Until then, we are blowing bubbles and trying to wait out this snow. I must admit I am constantly dreaming in my head of “chillaxion” on some tropical island. That’s what we are doing after all this, a big family vacation! I’ve learned that being with those that I love is enough, but thinking about being with them in a warm vacation spot is even better! With that thought I am going to try to get some more sleep and dream of palm trees and sun!

Jill

At my friends Rachel and KJ’s wedding, their priest talked about children (don’t ask me what they said at mine, I was trying not to trip), and he said that your children are a mixture of all the good things about each of you. Kind of like a little perfect recipe where you get to shake in all the things that you love about each other. I look at Lauren and Gavin and I see perfection. I see these two little intelligent minds with laughter and energy, and just the right amount of sass. It makes me want to laugh more, take chances, become smarter…just be better. On the mom-o-meter, I got an “ok” ranking today. Lauren has taken to grading my daily performance as a mother (brutally honest). I have learned, however, that there is a significant grading curve on days where chips, fruit snacks and play dates are concerned, so I try to throw these in when I have less than stellar moments. I think that I am trying to challenge myself to actually live a little freer, to allow myself to be less than perfect, laugh without inhibition, say what I mean, and be a little kinder than necessary — because those are the things that I want my babies to be.

Gavin is now saying “da-da-da”. It’s his first multi-syllable word, so that is HUGE and very exciting. Now I know for sure that God is a man, because all babies seem to say “dada” first. This is despite the fact that we are the ones lugging them around in our bellies for nine months (which I am still somewhat convinced that it is actually ten months: 40 wks, 4 weeks in a month, but whatever). He is still eating despite his nighttime supplements, so that is nice. I think that he would sit in his high chair all day and eat if we let him. He tried an oreo blizzard today and LOVED it. Cookie smeared all over his face, it was adorable!—(of course, right?) He’s trying to figure out how to transition from a sitting up position down to his tummy, then hanging out and playing on his tummy! And the kid is always talking business, apparently he has a lot of opinions as well, and is ready for us to hear all of them (:

Lauren is recovering from all the fundraisers this weekend. She went to the Fireman’s dinner with Jay and the Jim Gill concert with me and had a BLAST! I think she may have run a mini toddler marathon between the two, and is a little tired from both. They were both wonderful!

Throughout all of this, we have seen such kindness; such support that simply saying “Thank you” just doesn’t seem enough. But until I can think of something better, it will have to do. Thank you to our families, friends, and strangers who have come to help, love, and support us!

I have to get to bed, but I will leave you with Lauren’s cell phone conversation today:

Lauren: “uh huh uh huh uh huh” (pause) “Okay.”
Me: “Lauren, who are you talking to?”
Lauren: (covers phone receiver with her hand) “Excuse me.” (slightly annoyed look at me) “I am on the phone with Rosie the horse in unicornland.”
(Lauren gets back into make believe phone conversation)
Lauren: “Please tell her not to eat all the carrots because I would like some, and to look out for shooting stars”. (Click)
Me: “Did Rosie say that was okay?”
Lauren: “She wasn’t there, so I left her a voicemail.”

Jill

“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

Feliz Navidad! Jingle jingle sniffle sniffle, we are over the flu and onto the cold so this Christmas was pretty low key! Lauren picked out tacos as her Christmas meal of choice and is relieved that Christmas is finally here; Gavin of course, chose green beans, three times a day. Although, Lauren is decidedly concerned that Santa won’t make it due to lack of snow, I assured her that he has some wheels for his sleigh too. Jay is worried that she is going to discover that the fireplace doesn’t have a chimney, but I told him it may be a few years until we have to explain our way out of that! Simple day, may we be aware of the treasure that you are! We did our birthday cake to baby Jesus and Lauren was elated that she got to blow out the candles and Gavin was giddy with the flicker of the fire, we will see how easy it is for her to sleep with the anticipation floating in her head!

I had just gotten out of the hospital last year at this time to spend Christmas with my family and I was told by one of the doctors on rotation that they caught Gavin’s problem too late and that he wouldn’t make it, that I should just go home and be with my family. We called him “Dr. Death”.

Then when he was born, they brought us in this room to start preparing us to lose our son. They told us that they would manage his pain and that we could have people come and visit him in this secluded room. We told them to do whatever they could, and I looked up at all the doctors and interns in the room, there must have been like fifteen people there staring at us, and I said “go make miracles happen”. As I thought about this room I thought that if it came to it, I would set it up like Christmas (even though it was February), so even if he didn’t make it to Christmas he would see what Christmas would be like, the lights, the love, all the people that shared their cheer.

Today is like heaven on earth, a day that I was afraid Gavin wouldn’t make it to, a milestone in his journey. It makes me believe that the odds of him making it to transplant is more than the 50%, that it’s 100%, nothing can stop us now! We have him and there is no way I am giving him back! We believe in miracles…we have two of them with chocolate kiss eyes and shiny red cheeks with smiles that can melt your heart. May your Holiday be bright and filled with love and joy, I have some snuggle time to get to, Disney Christmas is on – that crazy Donald, and we are tracking Santa on the internet. Right now Santa is in Peru! We have been blessed with many blessings, may you be too! Peace and love, The Winslows

[mygal=winslow-christmas]

The day of the great cookie exchange brought about quite a bit of action at the Winslow abode. Gavin got some more skills and is rolling onto his tummy all the time now. This is AMAZING, we have been working several times a day to make this happen, so this is a HUGE feat! Kudos to his therapists on that, I clap hysterically every time. I think I actually startled him once, whoops. He must be in that “anything you can do I can do better” stage because he is all squeaky mouse when his big sissy is doing something or has something that he doesn’t have. I expected that from Lulu not him, but on the flip side, it’s doing great things in motivating him to move that little bod of his. His temper is kinda funny to see, I am sure he doesn’t appreciate me finding humor in it, but it is too cute! He has figured out to release the ball into the hoop today (which is a 9 month developmental skill woo hoo, ya baby) and figured out how to flip open a door to make his farm light up—the kid’s got skills, skill-a-licious!

Lauren, on the other hand, was busy writing the CEO of the North Pole while I was baking (since she declined her nap time today, man that is always devastating). I had to write them down because they were so funny I had to pass them along. Every sentence began with Dear Santa:

Dear Santa,
Don’t forget my house, I live between Libby and Lainey.

Dear Santa,
Don’t forget to feed your reindeer, we don’t want them sick. I would like to help you with that.

Dear Santa,
if your bag is to full of toys, you can drop them off at my house.

Dear Santa,
If your bag is to full and you drop them in water, a mermaid will probably give them back to you.

It’s been a crazy busy day, and if I never see another cookie pan that will be fine (who am I kidding, who doesn’t love cookies?!) Tomorrow dance class and a house revamp before book club! Okay, I’ve gotta go, Lauren just came in here and said that she was going to change Gavin—code red!

Life is good in the Winslow house, Gav seems to be bouncing back, but I think that Lauren may be coming down with it though. I guess it's inevitable if one gets it, we all get it. She asked me before she went to bed tonight to call all of her friends and let them know that she was sick and would not be going to their houses. She fell asleep in the middle of her list: Payton, Libby, Lainey, and snore!

Well we had an exciting turn of events, Gavin rolled from his back to his tummy on purpose and is starting to stay there all because of a little orange plastic basketball from the Smo's (thanks Smo's for encouraging our future athlete)! He's obsessed with this ball; he must have it in close proximity at all times. It's an awesome tool to make him work his strength up! He's starting to get so opinionated and gives a little whimper when things are not going exactly the way he wants them. I must say, he whimpers for a millisecond before he gets pretty much exactly what he wants, but kids are meant to be spoiled.

I bought a food processor, apparently Gavin feels that he is above the baby food variety and prefers big people food, but doesn't have the chompers yet to handle the textures, so this is a new project to bulk him up. He is finally up in the 15 lb. range again for the first time tonight so we hope to keep him climbing, c'mon lucky 16, I wish it took me this long to gain 8 lbs.! The kids are going to help me bake a zillion cookies for our cookie exchange, but Lauren doesn't mind as long as she gets to lick the beater. She has to lick it on a certain stair, it’s a little ritual, after every ingredient she asks if I'm done yet. Gav is making leaps and bounds in his lip smacking talent and now I have to do a double take to see if it's him making all that noise or Jay. We've had a fun week with Sally, Annalyse and Nick and T. Things are getting busier and busier as the holidays approach! Cary and the girls will be here in no time and then Mike, Hien and Sam and things will really get stirred up! Lauren is a little perplexed at what exactly Santa does since she found out about these toy making elf characters, but she did give her list to him at breakfast with Santa. I asked her what she was going to ask for, and she told me she was going to “think about it.” Well, better get some sleep, why is it that kids never sleep in? That would be awesome! Take care and happy holidays! Hugs, Jill.

[mygal=gavinxmas]

Well, the bubble has somewhat burst, since Gavs and I are sick, again…ugh! It was sweet though, we took him to the doctor today and his big sister, Lauren, would not leave his side. She told the doctor it was because Gavin likes her and she made sure that he was not hurting him, because she was his “big sissy”, my little warrior princess. For me however, she wanted to watch me get my flu shot so I had to be brave. She is fascinated with shot giving, hence she watches the growth hormone shot being given to Gavin. Funny how a little needle makes you cringe, but it wasn’t so bad. She also wanted to make sure that I wouldn’t be ‘left behind’ and that I would be coming home. She doesn’t like me going to see the doctor after I had to stay in the hospital last year. She was taking her mommy home and that was that.

Gavin is falling short on his development milestones, which I know is no surprise but it’s just frustrating. I just want things to be easy for him, he shouldn’t have to work so hard for everything. Whenever the doctor asked a question I felt like saying, “ya he does that, of course he does that… he crawls, he says mama, dada”…but—-nope none of the above, I just wanted him to stop asking.

When you have a sick kid, sometimes it’s like being caught in a forest fire. It feels like it’s coming fast and it’s right behind you and you are just trying to stay ahead of it and put out the little fires along the way. You’re just clutching and running as fast as you can trying to get out of the grasp of this disease. You just want it to go away and stop, but it’s relentless.

Anyway, I am just beat, this cold has us both wiped out and Gav is losing weight again. I absolutely hate the numbers 14 and 15 because we have been between 14 and 15 lbs for like two months now. I know it could be worse, I know that we are so lucky that he eats on his own, but I think we will throw a party when we see 16 lbs! I anticipate a feeding tube for Christmas, my poor baby. But thank God for green beans because for the last three days, it is the only solid food that he will eat.

He’s obsessed with babies, they make him light up…it’s fun to see and he does this new lip thing. He’s getting jealous of his sister when she has a sippy cup and he doesn’t. He wants to be part of all the action, especially if there is a flashlight to be found. He’s such a miracle! Hope this finds you all well and enjoying the holidays around you! We have seen such kindness through all of this, it’s heartwarming to see how much good this world has to offer. I know that someday, my kids will be out there “passing it on”. Take Care!