Save Baby Gavin

As parents I think you learn to live with the fact that there are a lot of good intentions that go wrong. The other day I was so impressed after a long fun day of playing at the park, picking up bugs and playing in dirt I was pleased that I was able to wash both kids hands before loading them back into the car. I was smiling to myself, knowing that they would most likely zonk out and I glanced in the rear view mirror to take a peek at them. As I look lovingly back in the mirror I see Gavin actually licking the bottom of his shoes…

So when I saw the beginning of the show, Men In Trees, they happened to be doing a storyline on kidney donations. I thought I would watch it and see what they had to say. While I am sure that they did not have the intention to demote organ donation, I feel that they did an injustice to it. The storyline was that a woman was going to donate her organ to her male friend. Luckily, someone else stepped in to donate the organ because she and her boyfriend decided to “save” their organs for each other. While it is a romantic idea at the surface and typical TV drama, I feel it plays into many fears about organ donations. You could be saving your organ for someone who you are not a match with, while others wait clinging to the last grips of their lives. The point is simple, if people waiting for a transplant don’t get one, they die, there is nothing romantic about it.

Donating life has been one of the best experiences of my life. Yes, it hurt, I can’t tell you that it didn’t, but today I am fine. It took about five weeks for my body to adjust and heal, just as it would from any other major surgery, but it is a drop in the bucket when you look at the timeline of your life and that of whom you save. The truth is, I actually came out better after it. It made me realize how precious my health is and recommitted me to protecting my health and reevaluate what I wanted for my life and kids. In fact, if I could grow another kidney I would donate that one too. With April being donate life month, I strongly feel it was important to point out some basic facts about organ donation.

Eighteen people a day die waiting for an organ donation. In Wisconsin there are almost 1,600 people on the waiting list for an organ donation. Nationwide there are 74,366 waiting for a kidney transplant since January 2008. Fifty percent of these people are under the age of 49 and every 13 minutes another name is added to that list.

Anyone can be a donor, even people above 70 years of age with preexisting medical conditions. Many myths about organ donation are untrue. All of the widely known religions: Roman Catholic, Protestant, Judaism, Hinduism and Buddhism fully support organ donation.

One day, Gav will most likely be on that list for his second transplant. One day, someone you know may be one of those thirteen names added to the list. That list should not be a death sentence but a promise of life. We all have an opportunity to give the greatest gift, that of life, through organ donation. If you have questions, or are interested, I strongly encourage you to look at the following websites: www.unos.org, www.donatelife.net and www.uwcopo.org. If you have any questions about being a live donor, please feel free to ask. You have more of a chance to die in a car accident than on the table as a donor…so in essence every time that you get behind the wheel, you are taking a greater risk than I did.

Tell everyone that you want to be a donor. In Wisconsin we only have about 50% of our state population who have committed to donating their organs to those in need, we can do better. Be proud of your decision, and know that you are going to be saving multiple lives with your gift, that is a hero’s legacy!

I was thinking this week how much perspective life takes and how everyone has their storms and their rainbows.

I often wonder if I paint too many rainbows because the storms are so emotionally tolling. But in doing so, I make it seem like life may be easier than it really is and I am doing an injustice to the other parents that are going through all of this with me. There is constant stress and fear that is a permanent part of having a sick child. You never get used to it and you never get over it.

On the other side, I feel guilty saying how hard it is because I have been blessed with a remedy for Gavin to feel good again. Trust me, I never for a minute take any of our miracles for granted.

So I wrote two versions of the same story this week (written on 3/9/08). Both are reality, both are talking about the same things and events. You can choose to see the storm or the rainbow in life. I see both. I believe that is true for every person in every situation. I choose to chase the rainbows, and weather the storms.

Photo: Les Chatfield

WEATHERING THE STORMS
This past week Lauren got the flu immediately after her “half” birthday party. We kept Lauren and Gavin as far apart as we could, because we just knew if Gav got this we would be in the hospital.

We woke up and scrubbed the house every morning at three a.m. Without fail, five days into Lauren’s start, Gav woke up with a high fever and some unusual habits.

He was like a little hot barnacle that clung to my every move. We were told to bring him in and his liver enzymes were in the 1000 range, which is quite high.

He was then admitted for 48 hours to do every culture under the sun and every lab test known to man. He was absolutely miserable and we couldn’t give him anything for the pain. (Tylenol is processed in the liver and ibuprofen in the kidneys, and both organs were being sassy).

Meanwhile, on the home front Lulu had turned from bad to worse. Grams took her to the doctor and she had a terrible ear infection.

Because it takes about 48 hours to get cultures back Gav was an infection risk and had to stay in his cell, I mean room. We go back in on Tuesday to check his numbers.

He is starting to feel better and if he continues he is to have yet another surgery on Friday.

Sometimes you just feel so helpless and blind through this. It’s like no matter how much I read I can’t seem to figure it all out, and sometimes I have to reread things a zillion times to get what they are saying. Sometimes it feels like you know just enough to shoot yourself in your own foot.

They say live a normal life and then give you fifteen handouts about mosquitoes, sun and food (summer) and flu’s and warning signs (winter). It’s enough to make you feel like you are going crazy. It gets so overwhelming, sometimes I wish I could trade spots with Jay and go to work just to get away. The truth is the disease is always here, and we will always be dealing with a part of it. It’s a constant mind game of how to approach life and its events.

There will always be a permanent sadness for having to do the things that we have had to do to Gavin. That Lauren has had to watch some horrific things done to her brother, while her parents sat by and watched or worse when we were the ones doing it.

Since we have been home Gavin won’t let me out of his site and I got his bug. You can tell now this is all starting to mentally affect him and he has to sleep literally on top of me for comfort at all times. We thought that it was supposed to be the first 100 days, but now have learned to expect another year of insanity.

Life as we know it has not changed. We still don’t see our friends, we still don’t make plans because we will inevitably be canceling them. Life can be ironic, unpredictable, even cruel at times…but it is always beautiful.

Photo: Steve Jurvetson

CHASING THE RAINBOWS
I bet you didn’t know what this past week had in store for us? Neither did we until Lauren found out it was her half birthday, so she was in charge of treats at school. She looked up at us with those chocolate silk eyes and asked what we were doing special for her at our house. Unwilling to tell her that a half birthday is an un-event, I asked what she was interested in.

She wanted her two neighborhood friends over for a little half birthday party. Two happy meals, two friends, and two sundaes later, Lauren was quite pleased that she turned four and one half. She said that this time, she “even felt older”. Unfortunately, she caught a bug and four and a half had a rougher start than anticipated.

Gav is currently obsessed with the movie Madagascar and is insistent about trying to put it into the tv anyway that he possible can. He also loves dangling his little body onto the fridge pull and clutching it for dear life until it opens.

When his appetite and grip started to go south, we knew that he was getting Lauren’s bug. Poor guy ended up inpatient and had every test done to ensure that it wasn’t another organ failure, or a rejection, or staff infection. Luckily they have an amazing child life program and had Pet Pals.

Gav was able to play with a golden lab and a mixed breed. He was beside himself with glee. He kept busy in his room by painting and throwing things around and watching me get them. Jay and I at least got to spend some time together. We’ve been very lucky to be able to support Gav and each other through most emergencies and clinic appointments. He is always the hand that catches me as my fingernails dig into the side of the cliff.

It allowed us time to read and learn and try to figure out what is the best plan for Gav’s future well being. We know that when he gets older he is going to be asking us why we did what we did, and we better be able to explain it to him. We are very lucky and blessed that his body has done such a remarkable job accepting his transplant. I know there are millions of parents out there wishing there was something like that out there for their child. I know that we are forever blessed to have friends and family that have stood by us through all these years. Although there have been bumps, we will figure them out as they come and find our balance once again.

Both Lauren, Gav and myself are on the mend and very happy to hear that the sun may be coming out. Life can be ironic, unpredictable, even cruel at times… but it is always beautiful.

Jill

Gavy’s liver enzymes are trending downward so we are holding on the biopsy and elective surgery right now. Luckily we have a team that is working very well together and willing to move things around to do what is best for Gavin.

I have a feeling that this is the same cold that Lauren is struggling to beat. Gav will stay inpatient throughout tomorrow to give him antibiotics and we will try again next week pending his recovery.

Thanks for all the prayers!

Jill

Gav had been a little unlike his normal self and sure enough we are having some complications. When we took him in today, his liver enzymes started to sky rocket within the last two weeks. The two usual culprits are infection or medications, so we are going in for a liver biopsy tomorrow as well as to relieve some other stress to his kidney.

I am on my way up to meet Jay and spend the night with my two favorite boys in the hospital. I am hoping that this is just the flu, (I say “just” even though I am completely terrified of Gav getting the flu as well.) since Lauren is still on the mend from the flu that she caught last Wednesday…say a prayer for our little man!

Jill

Lauren: (Fists and Teeth clenched) “Ahh! I am really getting upset with Gavin.”

Gavin:(Still doing what is frustrating Lauren despite her repeated requests to stop, and getting equally frustrated with her being frustrated with him.)

Mom: (typical mom speech) “You know Lulu, he is smaller and still learning how to play with things.”

Lauren:(exasperated with me)”Mom, he’s not a baby anymore, he’s two.”

So is the downfall of the “baby” and the entrance of the toddler. Gav turned the magical disaster of two and is exploring his new found freedom with more aggressive “mine’s” and assertive “no’s”.

He has started walking and is just picking things up like he has been doing them all his life. He has some new Elmo shoes he loves so much, and when I take them off he tries to put them back on himself. We call him his “lifts” since he seems so much taller in them.

In his slide show this year there is a picture of us reenacting a silly pose by statues, however they are a very serious set of statues. We saw them on Stanford’s campus when we went for our medical opinion and they have stuck with me as pertinent to Gav’s life. They embody six burghers of Calais during the hundred year war. The short version is that the burghers bravely sacrificed their lives for the rest of the city (this is not the part that reminds me of Gavin). The artist, Roden, who depicted them in their statue form took the opportunity to celebrate the idea that heroic deeds may be performed by ordinary people.

Gav, I must tell you that at two feet tall and two years old you remind me that ordinary people can do extraordinary things. The way that you have risen to life’s challenges and remain so strong and ferociously filled with life and love, you are a hero. An ordinary two year old living an extraordinary life.

My sweet Gavy Ry,

It has been a busy week—-I have rearranged my house 500 times, bought 1000 tickets to vacation hot spots and added a sun room so Gavin can play comfortably outside without having to worry about getting burned with his new meds, and lastly sold my house to buy an RV and travel the United States before Lauren hits kindergarten…in my head that is.

In reality, Lauren has been my companion and watched a little bit of America’s Next Top Model Marathon (I’m a sucker for marathons) and now has developed her own runway walk, that she calls “Hot Stuffin’” which has made for constant entertainment for her biggest fan(s)!

She is the water to Gavin’s swim trunks—- there is nothing that girl could do that Gavin wouldn’t think is the coolest thing on earth. He is starting to stand independently and is finding the courage to take a few steps again. His little chest puffs out bigger than the blimps at the Macy Day parade!

But boy oh boy does he have the temper. We call him the little “Tazmanian Devil” when things aren’t going his way. He makes no qualms of letting you know EXACTLY how he feels about it (which usually involves laying flat as a pancake kicking and screaming as loud as he can). That boy goes from calm to hot faster than Earnhardt can make it around the track! His new thing is trying to put on everyone’s oversized shoes and walk in them (hence the frustration, a baby can’t walk in a man’s size 11).

Lauren is totally in love with knowledge right now, she is so interested in everything! Especially nature, she’s going to be my little hippy! Thankfully there is the Internet so I can still make it seem like I know everything, and we look things up in the “Pedia” (Encyclopedia). I know I said I wanted to learn to cook gourmet, but for now Lulu and I have become crock pot champions…we have officially eaten through all the casseroles that we so appreciated!

We did get into a disagreement this week over a rabbit. There is a sole rabbit that is running rampant on my $3 end of season landscaping purchases from Home Depot. I vote the rabbit has to find a new territory, where Lauren strongly appreciates the tracks and their presence. Never thought I would ever relate to Elmer Fudd. Any tips to spray things to scare the bunnies? I’m down a hydrangea, an emerald something, and a burning bush. This is going to be like a 200 lb bunny!

Jay has been busy taking care of Gavin, who had a rough medical week. He was in the ER all Tuesday and has just had a lot of little things that add up to a lot. We meet with one of his doctors next Monday to discuss some of the complications, and hopefully it will give us a more clear picture of what is to come. We thought it was going to get easier post transplant, but it’s still a bit overwhelming. We think this part of the adjustment period may last the first 100 days and then it should taper off, but we shall see!

Jill

Lauren says we owe Grams, Pop Pop and Julie A LOT of quarters for helping out so much after transplant (that’s what Lauren gets paid for her daily chore). Things have been in quite a state around the house with Jay taking on the role of Mr. Mom. It always makes me think of that country song where he learns about crayons going up one drawer higher and rewinding a movie 15 times. It has taken about a week for him to get into a good groove with the new cares and two wild children in tow. It’s always a process to figure out how to work Gav’s disease into life and then for it to become just an aspect and not the center of it. We are trying to establish a new routine.

Gav strongly refutes Daddy putting him to bed in his new routine and has like a five minute slug fest with him each night as the battle of the wills takes place between a man, a baby, and a rocking chair! Gav is starting to walk and move around more now, so some of his strength may be coming back. He has been doing amazingly well still, but we are still tweaking his meds and he has to go in three times a week for his blood draws (thank God for the hickman)!

It amazes me how animated he is now, it’s like we have to relearn this whole new baby. Makes us realize how sick he really was. He is not quite fond of me not being able to lift him, and it breaks my heart to hear him say “uppy” and see him so sad when I can’t, but we find time to snuggle up in bed and hang out next to each other on the couch.

Lauren is a busy busy girl with her Grams at her side…the two of them are just the best of friends. Yesterday they went on a hike around the neighborhood and researched the tracks in the snow. Lauren is convinced that two of the tracks are probably deer and the other beaver. All those wild beavers around here in the city—-it’s almost hard to believe, but the girl knows her tracks (:

I have some good and bad days, usually the mornings are pretty rough and the nights are rough, it’s hard to lay flat for long periods of time. I have watched more TV in two weeks than I have in a year and I have decided that I need to do Amazing Race, start running in half marathons, and learn how to upholster furniture while becoming a gourmet chef on the side. Also, I would really like to become a hiking, nature type family. So I have some things to look up at the library for all my new future niches. I feel that maybe I am in a mid life crisis, since I seem to switch between HGTV and MTV and feel that these two channels are not very similar.

Jay and I try to relax by watching season two of The Office, one of our new found loves. Hope this finds you laughing at the end of your days and staying warm! Go Pack Go!

Jill

Everyday since Gavin was a twenty week fetus we have waited each day to see if he would be alive the next day. We never planned ahead, we never let our imagination run wild with the future. I now can see a little boy with a life ahead of him…I can finally start to let my imagination go.

We have just experienced a miracle, one without explanation – and one not only medicine can explain…we have been profoundly touched and overwhelmed and in complete awe.

I will have to update you more when I am feeling better. There is so much to this story. Between my parents and their childlife program here at the hospital, Lulu really viewed transplant more as a vacation than a traumatic event, and she is actually skipping out of the hospital at days end.

I continue to get better and stronger and am weaning myself off the pain meds quickly since they make me very nauseous and a little loopy.

The best news of all is that Gavin will be coming home today with us. It will be a time of new cares and new adjustments, but he is doing just famously…we couldn’t be prouder of our little man!

May the snow flurries melt before they hit your driveway!

Jill

It looks like all of Gav’s labs are somewhat better, his blood count is still low, so they will have to give him a transfusion in the operating room during the transplant.

Transplant is a go at this time. We will be preparing today, as we are at the hospital, and have a million “ologists” to meet with.

Please say a prayer that tomorrow Gavin wakes up and accepts this kidney and for the first time in his life, feels good…

Thanks to all.

Jill

Now I know where the script from National Lampoons vacation came from…ahh, Christmas has come and gone and it was beautiful and wonderful and it’s hard to find the kids in the midst of all the new toys that they have gotten. Things have slowed down to a tiresome pace since we moved to the third of January. We are back in lock down mode so we have had a pretty low key Christmas. All Winslows 24-7 has led to some interesting altercations between Lulu and Gavs.

Our last outing was Lauren’s Christmas concert to see her on stage with her little classmates. I think she may have only learned three words to each song, but she loved being up there. And really, is there anything cuter than three rows of Rudolph hats looking back at you?! Santa came after their show, and her eyes got as big as Reese’s peanut butter cups with delight. On our way home, I told her that I couldn’t believe Santa had made such a trip so close to Christmas, and that they must have a great class. She then assured me not to worry, Santa is not so busy, it’s the elves that are working like crazy. Apparently, she has decided that Santa is more in the PR, delivery management sector, which allows his appropriate face time with children immediately prior to his visit. He is in essence “the man” in a big red suit. Her favorite gift was her number one request, her harp (like every other four yr old out there, she too had a harp on her list—-who asks for that, only Lulu!)

We have put Gav on a rigorous exercise program prior to transplant. He is into sit ups (rotate arms on back of head back and forth and move Buddha belly side to side) and Hi-ya kicks…it’s all so very official. We are thinking of putting a sweat band on him and making a toddler exercise video…look out Baby Einstein. His hair is actually beginning to become too long for his mohawk which has put me at a crossroads. I do enjoy his mohawk (probably more than I should) but I would hate to cut his hair…which puts him at where he is now, a bad baby comb over…but I think that we are going to bear through it and let it grow out (Jay does not agree with this) and see if he gets his curls like his sister…I figure if I let him have a mohawk now, and then long hair, he can do little to shock me in the future (I’m going to regret that)…

Jay and I are recovering from the 46 sugar cookies that we ate over Christmas (and when I say 46 I really mean 117.75) and are just trying to make it through each day…we did take Gavin in today and his labs have been the worst that his have ever been. We have made the appropriate changes, and hopefully we will see the results that we need on Jan 2nd to proceed with his transplant. They do believe that it is possible to get everything in place, just more dialysis and shots and food changes…but on the upside, his liver enzymes were good, so we just need to boost his hemoglobin quick, especially to avoid a transfusion which will complicate things. Well, I better get to my gift from Santa this year, five empty photo albums for about three years of photos backed up onto Shutterfly, that I still have yet to order… the curse of the digital camera…

Jill

So we have been playing roulette with Gav’s transplant dates… We went from Dec 28th, to Jan 17th, to Jan 31st to Feb 21 and now, we are finally set on January 3, 2008. We had to make some more adjustments, apparently there was a misunderstanding, and we will still be doing an open nephrectomy so we were juggling surgeons schedules (imagine trying to coordinate two operating rooms, three surgeons and two specialists).

I have been having some anxiety with transplant since now I have seen my organs in 3D (which all the medical people think is so cool, but is freaky when you see your organs rotating on screen, “as if they cut me and I was looking up through my feet”) and they told me that I most likely will be losing a rib on my right side (very Hollywood). More anxiety piled on top of that when they showed me that Gav will have an incision all the way vertically down his chest – so there’s been some sleepless nights.

I can’t believe that we have to do all of this to make him healthy. It just seems so bizarre because when I see him, I don’t think of how sick he really is. I see this little bubbly, cuddly, happy baby. I feel like everyone must be crazy (but as usual, everyone is sane, I’m just crazy). It was the first time that I ever started crying in a doctor’s office since he was in the NICU, when all the transplant information came at me like someone was throwing tomatoes at me. It just has to happen this time, I just can’t take another bump, I just want him to feel good, if we have to do this, then let’s do it!

Gav has been trying so hard to stand. He has gotten himself into a pike position but can’t quite balance that belly to stand up independently (he can stand by pushing off of objects or people). I love that he is in the stage where any kind of “Boo Boo” can be fixed with Mama’s kiss. He would crawl through the whole room for a kiss on his “Boo Boo” and then instantly, he is okay. That and Beyonce’ he loves that perfume commercial (but who doesn’t love a little Beyonce’ in their lives?) He is obsessed with helping me with the laundry and is fascinated when he sees the water pour in, one of these days he might tip himself right in there. He currently has a sinus infection and may have renal rickets (a bone disease that should remedy itself post transplant) and has been complaining about wrist pain. Every time that he sees Santa he says “Ho, Ho”. (I’ve tried to get him to the ho, ho, ho – but he won’t do the third, perfectionism I know on my part, but it’s just not the same without the third). Christmas has brought back the word “mine” to his vocab and he has to make sure that Lauren knows what is his…it’s great because he has an awesome new pouty face that I like to watch when he has to share.

Lauren on the other hand is having some restless nights “because I can’t get Christmas out of my head” (insert two hands on head and her trying to shake it out). We went to get her hair cut before transplant because Jay can manage a pony tail, but that’s where it ends so we wanted to make it simple for everyone. It was her first haircut ever and the hairdresser treated her like a princess (now we have many requests for a little pamperin’ at the salon). Most mom’s have first hair cut bags with little wisps, I have a baggie with like a five inch strand of curly hair.

She has been wonderful through Gav’s vomiting (it’s been heavy and frequent again unfortunately), one night when he started at 2:30 a.m. she stood straight up in bed (of course she had snuck in by us), threw her hands out and told Jay and I not to worry, “I’m a professional” and went to go get us towels and help out. I can tell that she is getting hip to all this medical stuff now. She needs things “stat” and any question that Jay and I can’t answer she tells us “to call the Dr. on call”.

Thank you all for all of your prayers, we will need them once again on the 3rd. We feel so blessed to have yet another Christmas all together and know how lucky we are. Thank you for your support, 2008 is going to be yet another miracle for our family, may you find yours as well!

Happy Holiday hugs from the Winslows

So I asked the kids what there favorite things were and this is what Lauren came up with (she also took the liberty to add in for Gavin).

“2007 My Favorite things” (Mini-Winslow style)

School buses without seatbelts and wet noses on puppies
Bright colored markers and warm bubbly tubbies
Rainbow paper packages tied up with bows
These are a few of my favorite things

Grammy’s brown pony and hard boiled eggs
Baseballs and footballs and butter with noodles
Sleds that fly with the moon on their rings
These are a few of my favorite things

Girls in posh dresses with fancy fuzzy sashes
Snowflakes I catch on my tongue and eyelashes
Snowy white snowmen that melt in Spring
These are a few of my favorite things

When the marker dries up
When it’s too cold for recess
When I’m feeling yucky bo bucky
I simply remember my favorite things
And then I don’t feel so bad

Jill

To unpack or stay packed, that is our question. We have the liver enzymes on the way down (yeah!) and a new tentative date of December 28th! Three times is a charm we suspect, and now we are not doing anything that we originally thought we were doing - thanks to some new research. We are doing ultra-low dose steroids and I am having my kidney removed laprascopically, which will make the healing process so much easier!

Things here have been crazy busy per always and time is flying by faster than these nasty Wisconsin winter winds! I have once again not been able to get a successful Holiday shot of my two little ones, I am now deeming every photo Christmas card that I see with two or more kids a Christmas miracle…Ours usually start out all calm and lets make it fun (ho, ho, ho) and then it slowly leads to the idle threats of “look at the camera — for the love of ”…needless to say the later does not ensue many hot chocolate faced smiles…and we will once again, not be doing Christmas cards this year since the date is so close to Christmas, but have high hopes for next year (I promise).

Gav is officially such a little boy. I know this because he is now into trucks, which is so funny to watch him play with, I like it when he thinks that he can sit on the dump truck part and the wheels squeal out from under him and he ends up shocked sitting on his bottom scolding the “naught naughty” truck, with the finger wag and all. He has developed just enough energy to be a little sassy and now does everything and anything to stay up just a few minutes longer before bedtime…from grabbing your face to make you look him in the eye to starting up his new favorite fake laugh (which of course if irresistible to not laugh at) and reverse psychology is working wonders on his eating. “Don’t eat mommy’s yogurt”-gulp! Boy, definitely a boy.

Lulu on the other hand is a straight up posh girl…thanks to my cousin Julie’s visit and the purchase of her first Fancy Nancy book, she has taken on a new persona…she is now “The Lovely Lulu”(but of course she is not 100% on this new nickname, she said its fine for now but I should work on it). In the morning after the tubby I hear requests for “posh” outfits…everything is posh, ‘the fancy word for fancy’. However its hard to take her new founded attempts at sophistication seriously since she has a severe stuffy nose…does anyone know how to teach a four year old how to blow out…Its like this terrible torment for me, I can’t seem to get her to blow out, its always in, no dragon breaths out or feel the air on your finger underneath, nothing is working…seems so simple, but apparently nose blowing is an art.

The cold does not deter her or Gav from their new favorite activity, singing and dancing and giving a concert while standing on top of the laundry basket, laundry baskets provide hours of fun at our household. They put on the best show I’ve seen in years…but then again Jay and I don’t get out to much (: Lauren is obsessed with coloring and now has perfected her triangle reindeer (just for one of the million letters that we have sent to Santa this year) and the family picture, where she even gives Gavin his mohawk (because he is “Bad to the Bone”.) Maybe I should turn that into a Christmas card, hmm its a thought…

Anyway, I will leave you with my bedtime conversation with Lauren…

Lauren:”I know where I came from (very hoighty toighty with arms crossed and eyebrows raised)—-a stork made me”

Me: “No baby, God made you”

Lauren: “But how, (see brain working here) he doesn’t have any tools up there”

Me: “With his own two hands”

Lauren: (ponders for a bit) “I know he must draw them and cut them out and then has the stork drop them off”

Me:(thankful that puts off any uncomfortable questions) “Interesting theory”

Transplant has been canceled. Gavin’s liver enzymes are elevated. They believe it is a reaction to the antibiotic Augmentin but need to watch the numbers go down before they can transplant into it.

We are devastated right now, but know that everything happens for a reason. They are anticipating a January transplant date if his liver starts to improve over the weeks. It looks like Gav will be having a kidney less Christmas…we will get there, I guess today was not his day.

Jill

We are stronger having this army of people behind us. Thank you for all your kind, encouraging loving words, you have no idea what they have done to comfort us along the way, it has been a roller coaster.

We are strong, Gavin is strong right now. He is eating, he is not vomiting and he is ready. We are going into this embracing his new life and will face whatever comes as it comes with God at our side…This is his moment, may all the angels be watching over him as we prepare to see his medical team aid in God’s miracles!

May you all be blessed and have a very Merry Christmas!

All our love,
The Winslows

We have our sea legs back. We are in the boat with transplant. I should know better than to journal at the end of an eternal night!

We are very excited to see Gavin and to have made it to this point, we have been blessed beyond words. May this new kidney give you that touch of extra spunk Gav and may recovery be quick! It’s time you get to live your life at 110% just like your sister! I’m sure you’ll be a bolt of lighting just like your sissy!

Jill

I can’t help but cry when I have you alone, not in front of Lauren, but when its just you and I. I think of all that you have been through and all that we are going to ask of you at just 22 months of age…I think of having to carry you into the hospital and part of me thinks that I can’t do it, what I really want is to run in the other direction. To walk you through those doors means that all the praying and wishing that I have done for the last several years of my life has not fixed this…this is our option, this is our Hail Mary.

For every surgery I have been the last thing you see as the mask gets put on and I have been the first one to hold you when you woke up and this time I will be laying there in some other bed with no comfort to give. I can’t help but feel weak when I know that I am going to have to hug you and Lauren that morning and know quite simply that there truly are no promises, although I would like to say that there are, I have learned that life can be that cruel at times.

Instead, my sweet babies, I will tell you of the promises that I will keep… I promise to love you and cherish you for all of my days. I promise to show you the world and to teach you to be kind to others. I promise to teach you courage and strength and curiosity, although you both do those so well already. I promise to push you into ambitious goals and stand behind you no matter what you face. I promise to teach you what love is, how strong and mighty it can be.

Someday, when you have children of your own, you will understand this fight in a different light. You never truly understand the love of a parent until you are one…you both have given me the greatest thing that life has to offer, a purpose other than self. Someday you will look back on this day and realize what an easy decision this was in the end to make – you and your sister already have my heart… this is just a kidney. May God be holding us close!

Donate Life!

She should be called “mother-less” nature for daylights savings time, no true mother would mess with their kids internal clocks like that! Wow, we have been in a whirlwind of chaos…we have the earliest Christmas decorations up so that they will be in place at home upon our arrival home from the hospital…yes that means it’s a go, November 29th, Gavin will get his new and improved life (as long as he can kick this cold he has)!

Lauren got a really severe respiratory cold in the middle of the Bee Movie…we had her in urgent care and the ER throughout the week. She was so sick she told me that “even my hips won’t wiggle.” Now that’s one serious cold if it dampened her beat! Lulu is finally on the mend after a week of sleepless coughy nights! We have started her up on an allowance and daily chore wheel so she can start getting a concept that things cost money. She advised us that she was willing to do chores as long as she didn’t have to “work as hard as daddy” or “work for the man.”

Gavin’s been workin’ hard on his vocab. He is a butterball talking machine! It’s kind of fun, he’s in the stage where you are constantly trying to get them to repeat things back to you (no he cannot say supercalafragilistic, I asked him already). We have set up Christmas in the house already so it’s all put together for when we get back, and he thinks that every shiny round ornament is, of course, a ball. He does have quite the wicked arm (of course Jay is already thinking he is going to take the Cubbies to the series while I on the other hand, believe he would be better suited for the Brewers). He is loving the dancing animals that sing a song and move, he is starting to bop a little standing up, and will pretty much drop a beat on demand!

He is back to his vomiting, but in a couple of weeks, post transplant we are hoping that will go away as well. Needless to say we are in lock down to try to avoid any further germ exposure so close to transplant…immediate healthy adult family only.

On a serious note, there are so many many people that we are thankful for this year…his doctors (Wigton, Basir, Kym, Ehlert, Pan, Van Why, Bartosh, Neary, Anderson, Balcom, Kryger, Serogy, Sollinger, Conway, Erickson, Salvatierra, Concepcion, Comisky and Forester), his nurses (Karen, Linda, Jan, Dawn, Jackie, Emily, Mary Lou, Amy D, Amy M, Norma, Rick) our families, friends and strangers that have shown us that life is a beautiful thing and although this road has been lonely at times, we never walked it alone. Thank you all for your constant support—- it’s taken the world to raise this child!

Better get back to the preparations. We have so many, many, many things left to do! May you feel loved and equally blessed this Thanksgiving!

Jill

My mind lately has reminded me of my music collection…eclectic and cluttered. When I realized I was paying more attention to the Target toy ad than the happenings in Pakistan, I knew that I needed to check myself. It’s so easy to get so lost. Thoreau said it best, “simplify simplify”… I need to find my Walden Pond.

We have a date, a very tentative one, November 29th if the stars so align (or the specialists agree)…we did not get the news back on his last blood test that we had hoped, so it leaves us in a bit of a holding pattern. I feel like whispering this, as to not jinx it, but Gavin is the best that he ever has been. He is strong, and eating(only a little, but we’ll take it) and the vomiting has stopped. Gavs is attempting to stand on his own and walk about four steps at a time to me. He gets so puffy proud of himself, like the Packer fans did last Sunday. He finds himself particularly funny and throws his head back to laugh at himself, I guess we will have two hams this Thanksgiving!

Lauren let me know that she is starting to “get into inappropriate things” (i.e. bathroom humor is a big hit). The other day she said “dang it” and I said that we should come up with a different word, “how about bubble guts instead,” I said and she looked at me and told me that it was a “very inappropriate” thing to say that. I told her that if that’s the case she should love it—-hence I hear “bubble guts” about thirty times a day! She is coming off of her sugar high from Halloween trick or treat and is wondering when Thanksgiving will squeak by so that we can get to Christmas already. She is obsessed with Johnny Cash’s “Burning Ring of Fire” and we are putting an obscene amount of holds on his CD’s from the library.

Jay and I had an over over coaching moment (again) last weekend when we took the kids to the church community day with a rock climbing wall…we strapped Lauren in so she could get her climb on, and proceeded to try to “coach” her through it, she turned around to hear our words of wisdom and fell off. You’d think that we would have learned our lesson with the big wheel race…but finally it hit me today…some things as a parent are left better unsaid, and some things they have to do on their own. That’s just tough to do, let them do their own things, make their own mistakes, and climb their own mountains.

Jill

We went to the emergency room last night, Gav’s body temp dropped to 94 and his pulse was really low. He was sleeping and woke up vomiting violently, when I picked him up I felt how clammy and cold he was. I started to panic, we unhooked him and spent the next four hours in the ER.

It’s amazing how abnormal things can become normal when you live with them long enough. I can do dialysis in my sleep, and sweep the reality of his kidney disease under the carpet so I can function on a day to day basis, but it’s these moments – when the world seems to stop and get hazy, when the reality that we are always just a step away from losing him, that it hits you how precious life is, every second of it. You think their are guarantees, promises, but there are no such things. There are moments, moments that are here and gone that you hold onto, and that is all that you can truly hold.

Gav is doing good otherwise…he is starting to take off on his talking and it’s so exciting! He knows all of his species of balls, football, basketball, and my favorite of his – “Bay”-Ball (baseball). He is starting to sign “all done” and “bird” and can say “Pop Pop”, which just makes my dad fall even deeper under Gav’s control! It’s so funny to watch him because he is just like a little bundle of love and is starting to like some independence, as long as you are still watching him. He’s starting to do the push hands away, “I can do this myself” business. He’s trying to explore just about everything, so we are getting to see a lot of that hot headed temper of his.

Gavy wanted to give a shout out to his buddy Gino who is now on Milwaukee Channel 12…just proves that good things happen to great people!

Lauren is busy teaching me about life from her four years of experience. In our neighborhood, the kids “ghost” houses (the kids run around and ring the door bell and leave candy and you hang the ghost in the window). When the door bell rang, Lulu meandered down to see who it was and I told her we got ghosted. She looked at me and put her hands on her hip and said “did they ring the doorbell and run?” I told her, “Yes Lauren, and they left this bag of candy.” Lulu said, “Mom, (sigh) that’s ding dong ditch (she turns and goes back upstairs thinking about all the ways that her mom doesn’t get it).”

She is starting to get interested in handwriting and has officially written the word MOM which is very exciting. We have the letters down, P, M, O and L and somewhat a U.

She got to ride Rosie (my mom’s horse) this week so we are on the we don’t need a pony detox.

With Halloween right around the corner, I have to admit I am just a smidge bitter that we aren’t on the road to recovery and still sitting without a date. We go in for labs next week Monday and hopefully we will learn more about that. We also go for his wrist follow up, so hopefully that all healed well seeing how Gav was pretty much not into wearing the splint.

For Halloween, Gav is wearing an Elmo costume and Lauren will be the princess that she is, Cinderella. It’s fun to see her getting excited for trick or treat, but she has already started drawing pictures of Santa and looking at the doll catalogs in the mail.

Jill