Lauren is two months into kindergarten now and is adjusting well. She came home the other day with an announcement after I asked her how her day was, “I have a boyfriend” she said. “He’s totally into me”. So the next day, being the mother bear that I am, I checked in with her to see how things were going with her new man, “I think he kinda broke up with me”. She seemed unphased by it citing the other kids she played with at recess instead. The dynamics of five year olds are eternally entertaining. She has come to the conclusion that Jay and I stay up at night and do all sorts of fun things without her. So around the breakfast table she always asks what we did the night before while our sleeping beauty was laid to rest. It’s always tempting to come up with some fun vacations, or pony rides in the kitchen, but in reality things have been a little off kilter as of late with Gav so the stress seems to be leading me to an early bed time, and middle of the night research as I used to do when Gav’s dialysis machines would incessantly beep.

We have been having a buffet of new issues arising with the Gavinator, and if they were all singular I may not be as worried, however it seems to be a rash of unexplainable that has left me, shall we say “jumpy.” After a while, you start to become an expert on your child, and you start to feel this pit in your stomach, and although you know that clinically there may be no signs of immediate distress, you can feel it looming. I think that one mother said it best (Thanks Jenny) that I am a Gavinologist, and things seem to be heading a little south in his health, but not deep south (I hope). He has had two heightened creatine levels which indicates the function of his kidneys are decreasing. His eosinphils are double the normal range so that has left him uncomfortable and itchy as of late and he has no measurable mycophenelate which is one of the three immunosuppressant drugs that keeps his body from recognizing the foreign kidney and attacking and destroying it. Despite the combination of these three factors, Gav still is a functioning, wild and crazy 2 and half year old, but he’s just so ever slightly off kilter.

I think that is what makes this disease so sneaky. On the exterior shell, they can act and look just fine, but inside the disease is always there, lurking and ready to destroy at any minute. You can go from fine to horrible in 60 seconds. It is a constant reminder that a transplant is not a cure, but a way to continue to live with the disease. Sometimes, after a while, you want to deny the pit in your stomach as paranoia, so you can continue to live in your happy bubble of denial that your child is better (and he does feel better), but the reality is that he will never be fine. We’re keeping an eagle eye on him and hopefully, if anything arises, we can extinguish it fast.

On the exciting front of the spectrum of life, we are getting ready to welcome a new leading little lady into the Winslow family at the very tail end of March. Jay and I got our first peek at her yesterday and as of right now, she looks, happy, healthy and active. I am convinced, that she will only grow happier in the upcoming months with all the turkey and Christmas cookies that lay ahead in her future (they’re not for me, they’re for the baby)! We wish you all a Happy Thanksgiving. We have started the long scroll of things that we are thankful for this year!

Jill

He is talking like crazy and officially is in his own room (YEAH, the kid is like just under three feet but knows how to monopolize some major bed space and is a night gymnast) thanks to some wonderful women who advised feeding his tube through his pj pant leg to prevent tangling around the neck (only recommend this for gtube people not ng, since it could pull it from position).

He is almost long enough to touch the pedals of his big wheel, which is good since the Transplant Games are coming to Madison in 2010 . I figure he will probably “Phelp’s” his age category. (I’ve talked to his doctors about upping his steroids prior to the games. My request was denied, they didn’t appreciate my sense of humor).

Lulu has hit five like a tornado, and has started her first year of school. Gav and I took her on her first day and I was all prepared for her tears. As we were about to leave, I bent down and looked her in the eyes and told her that I loved her like crazy, she sighed and said, “I know, you’ve been telling me that since I was a baby, and now you are probably going to tell me that I am the best girl in the world because you always say that too”…I knew then that she was ready to face school. I did of course shed a little tear when we were walking onto the playground and Gav started crying and told me to go back and get Lauren…he misses his little play mate! Most school stories revolve around recess and who she thinks may or may not have to go to the office. She will make a great hall monitor someday.

She is elated that the Cubs are in the playoffs despite her mother trying desperately to make her a Brewer’s fan…the irony is, it’s easier to be a Cubs fan right now than a Brewer fan!

Life has come full circle from the medical immersion our lives used to be, and things are starting to switch to monthly clinic visits and bi weekly labs. We’re learning to compartmentalize our life and not worry until there is something to worry about. Gav has a sedation appointment on the 1st of October to switch out his tube, so say a little prayer on that day please.

We’ve stopped hiding from life and are starting to embrace every and all experiences. Every time I hesitate when it comes to Gav, I think to myself, he is going to be doing all sorts of things (and then some) when he becomes a teenager. He is a by product of Jay and me so I know this will be true. So we may as well tread water together right now and see what happens (this of course does not mean that I am not going to sign him up for all non contact sports and try to guide him in gentle directions). What is life if you can’t experience all of it, and ultimately, Gav and his body will decide what is possible.

Well, now it’s off to make more big decisions around here, like what the kids are going to be for Halloween, why my kids are talking about their politics to strangers (I’ve created political monsters), and what is in this pantry that will cook itself in time for dinner!

Hugs,
Jill

Here are some summer pictures of our angels:

I was just reflecting on Gav’s six months and I thought that the grocery store would be the best example of how much things have changed. Six months ago Gav was helping me put things in the cart as I walked with him in my arms and pushed the cart in the other. Now he prefers to sit in the cart and throw things out when I take too long. It must look quite silly as you can barely see him because the milk and diaper boxes tower over him and things spontaneously fly out. However, his other quirk helps buy me a few more minutes of grocery store malay as I ask him 800 questions that end with him asking me “why?”. Also, Gav will never pass up a good opportunity to lay out the word “no”. No and why are definitely the top two words used in our house. He is quite the philosopher and loves to pontificate on the reason why for just about everything. He is starting to grow some and has hit the 10% mark on the growth chart.

Gav went in last week for his g-tube placement so he no longer has his “tubie” on his face. It was a rough surgery, as they all are. He is just now starting to feel a little bit better which is nice. It is so great to be able to go out and not be stared at. Last week when we went to the zoo I was stopped four times to be asked what was “wrong” with my son and this week, stopped zero…so the anonymity is nice. It is great not to have to worry about tube placement as well, or him throwing the tube up at night so I have finally been able to sleep again (other than the 13 kicks a night from Gav who thinks it’s cool to sleep horizontal).

Lulu is just being posh and hyper and recently cut off ten inches of her curly locks. I must admit I am very proud of her but also was very hesitant. She told me that she wanted to donate it to locks for love and I gave her the ol’ maybe next month “hoo haa” response and she grabbed her little scissors and held them up to her hair and said that she would do it herself then. I knew if I turned my back for one second that hair would be gone, so I immediately made the appointment. It’s very cute of course. I just thought if we were all as determined as a 4.8999 year old (she is also very upset that her birthday is taking FOREVER This year to get here already!) how much more the world would have accomplished (on the downside thought there would also be a heavy increase in drama, she is like a soap star). The thrill of t-ball is dwindling and she usually only pulls it together for the first inning and the second and third are either spent as using Jay’s arms as a jungle gym as he tried to rally the team into the second inning, or picking dandelion and clover boquets in the field. She has expressed interest in going on vacation (aka she jumped on her dad grabbed his collar and told him that was the one thing she wanted this summer, after a water park and horse of course). Jay asked her where she wanted to go and she replied “Africa” of course, we got her down to camping so that is on the itinerary.

We’ve been busy enjoying life and arguing with the people at the insurance companies. In our experience it seems that most of these people are hired for their jobs because they can say “no” so easily. We have decided that there is some magic verbiage out there that you must use when communicating to insurance company customer service representatives, because just plain vocabulary gets you nowhere. I think it’s some nonsensical secret password like “Aladdin flies an oriental rug” and that will get you to the third person who doesn’t know anything (after a two hour hold time) and they would like to help you but it would take three months processing time, six months of returned phone calls, sixty pages of signed notarized papers and a thirty dollar signature. We limit those to only once a day, because they can be entire day mood crushers.

Overall, we are so happy to see Gav and Lulu running, wrestling and laughing like all kids should be doing. She’s like a little fairy princess and he’s like the mini hulk so it’s always interesting, and mostly crazy, and beautifully exhausting. And there is not a night that goes by that we don’t know how blessed we are for the day we’ve just had and the next one to come.

I just want to take a moment and bring your attention to a family who has a little boy just like our Gavin. His name is Major Key and he will be having his transplant in California at Stanford on July 11th. Major’s kidney will be coming from his daddy. Please say a prayer and check out his site at www.cota.org under patient campaigns. We have never met, but his mother and I have become dear friends from across the miles. We have promised each other that one day the boys will meet and play while we relax and don’t talk about any of this! May God be watching over all of them. Also, if anyone is in the CA Stanford area and has housing that they would be able to use, please let me know, as they are out there for three months.

Happy fourth of July and God Bless America and all of you!

Jill

We are lucky that Gavin is most likely out of the liver failure zone, but it is very likely that he will develop emphysema somewhere in his thirties to fifties. There is no cure. There is nothing that we can do other than keep him away from smoke and smog.

Here is some information on the complicated process of inheriting the disorder and its different levels of severity from www.netdoctor.co.uk….

“Alpha-1 antitrypsin deficiency is an inherited condition caused by a defective gene on chromosome 14. Genes are the sequences of DNA carried in chromosomes in the nucleus of cells.

Over 70 different variants of alpha-1 antitrypsin have been identified. In laboratory tests normal alpha-1 antitrypsin is labelled M.

Everyone inherits two copies of chromosome 14 and a normal person is designated PiMM. Pi stands for protease inhibitor. The two most important abnormal variants are called S and Z. Both result from mutations of the alpha-1 antitrypsin gene.

Individuals may have two of these abnormal genes labeled PiSS or PiZZ, or one of each PiSZ. This is called being homozygous. Or they may have one abnormal and one normal gene, eg PiMS or PiMZ . This heterozygous state makes you a carrier of the disease.

Alpha-1 antitrypsin genes are co-dominant, so each gene of the pair makes 50 per cent of the alpha-1 antitrypsin produced. But an abnormal PiZ gene only makes about 10 per cent of the alpha-1 antitrypsin produced by a normal PiM gene. PiZZ people have only 15-20 per cent of normal blood alpha-1 antitrypsin levels, which is linked to severe disease. People with one PiZ gene and one PiM gene, PiMZ, have alpha-1 antitrypsin levels around 60 per cent of normal (50 per cent from M and 10 per cent from Z). This is usually enough to prevent disease.

People with both PiS genes (PiSS) are less severely affected, with alpha-1 antitrypsin levels 60-70 per cent of normal. This can cause lung complications but not usually liver disease…”

There are like four different levels of severity of this disorder, and Gav is in the second tier. There is very little information on this level of the disorder, because there are only a handful of people in the nation with this kind of phenotype.

Jay and I have been phenotype tested and we are both carriers of the disease. Apparently we had a one in four chance of passing this along to our children. It’s hard to think that on top of his kidney failure we gave him something else too. This is the reason for Gav’s elevated liver enzymes.

Mayo Clinic is a leading center for treatment of and research on Alpha-1 antitrypsin (AAT) deficiency. To find out more, please visit Mayo’s site.

The second experience was overwhelming, but for a much better reason. We were blessed to have gone on a mini family get away to Yogi Bears/Three Bears Lodge in Warrens, WI (beautiful fun facility), and meet other families that are living with children with kidney disease and lupus. It was so amazing to look around and see other kids living through this disease.

It was the first time when we felt like we weren’t in it all alone. It was the first place where medical terms, ideas, frustrations, encouragement was exchanged with real human people who got it without even having to say a word. I have found out that no one really understands anything in life unless they have gone through it themselves. And disease, although you try to tie it up in ribbons and put it into a nice pretty box, always plays the main role in your life. You’re afraid to leave and go too far away from doctors. Your child gets a cold that everyone else is able to beat in three days and it takes us a month to get better with med changes, diet restrictions, twice a week lab draws, creatine bumps.

Since Gav was born, we’ve experienced just 10 days free from a hospital. Transplant has been phenomenal, Gav is doing amazing, but life has not changed.

Gav is obsessed with sports right now, baseball and basketball in particular. Thanks to Camp Sunshine he loves swimming with all his heart! He always wants to “hoop it” or is wearing his glove throwing the ball at like 45mph (he’s got quite the arm). He’s developed quite the personality and is using three word sentences (mostly commands to me) and is in love with yogurt and pizza. He frequently is yelling for food or snacks. I know his unending appetite is caused by the steroids, but if he’s in the house he wants to be eating. His creatine level went up from .3 to .4 (still really good numbers) so they think it’s reflective of this month long tummy flu. But we are getting an ultrasound to look into it.

Lulu is about to be done with 4K and the summer is almost here. She has a few simple requests this summer. She wants to build a water park at her house and wants to swim with dolphins, but nothing unattainable. She has become intrigued with trying to tie her shoes and learning about animals and planets.

Jay is coaching her t-ball team and she is fascinated with being on a team. She is more interested in the upcoming snack schedule than the batting rotation. She is avid that she will be the first female Cubbie (unless she is wearing her Brewer socks, that one day every couple of weeks, she cheers for the Brewers to support her mom’s team).

Jay and I are working on getting back into the swing of things. We tried living life in a bubble, but found out that it just doesn’t work like that. Life and germs hit ya wherever you may be, so we are learning to live around it so to speak. It has been a little tough because we’ve done like two things and Gav has gotten pretty sick, but he will get stronger and so will we. We’ve started a list of things that we want to accomplish to push us to make time for life. Even though this whole thing can be exhausting, we are not going to let it win!

Hope this finds you all well and looking forward to eighty degree weather (FINALLY!)

Jill

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 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

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

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

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,

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

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

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 has taken a team of specialized doctors, lots of favors, donations, prayers, and support to raise our family, and we appreciate all the messages, prayers, support and willingness to help just to get to transplant. It means a lot to Jill and me to have such a great support system and to know that literally hundreds of people are a phone call away to help.

Gavin’s kidney is still working great, and the doctors continue to watch closely to see his body adjust to his new kidney. I have heard rumblings of discharge from the hospital staff, and I’ve even spoke to one of the discharge administrative staff. So, Gavin may be out of hospital before or around the weekend.

I have been by Gavin’s side the whole time and got to witness a miracle, which has been incredible. He may even turn into a Daddy’s boy by the time he gets home (but I doubt it).

Now I’m focusing my attention from the process of kidney dialysis to all that is involved in preserving the normal function of his new kidney. This includes knowing the information on all his blood labs and his new medications. The anti rejection medications play a huge part in keeping his new kidney safe.

I’m trying to get everything lined up (insurance, pharmacy, home nutrition, coordinating information from the transplant team, and keeping watch on his blood labs) so when they tell me we can go home – we will be ready (which may not be too far away :).

Thanks again for everything.

Jay Winslow

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Here’s a recap of all the events of transplant day and beyond up to this point:

On transplant day (Thursday, January 3rd), Gavin got out of surgery around 1:30pm and stayed sedated (by the doctors) until the following morning. His kidney function was normal by 5:00 p.m. that same day, which was amazing and what I noted in my last update.

The next day (Friday, January 4th), he had his breathing tube removed in the morning. In the afternoon, Gavin headed back to surgery because his central line came out. It was only a 15 minute procedure, but it required sedation. It was unfortunate that he needed additional surgery, but I knew he needed the central line. I was just so happy his kidney function was working normally and that helped me handle the news of additional surgery.

On Saturday, January 5th, Gavin was able to drink. He was still tired but in good spirits. His kidney continued to adjust to what his body needed versus what Jill’s body needed. This includes the amounts of pain medications and other medications which have been adjusted as well.

On Sunday, January 6th (just three days post-transplant), Gavin was given the clearance to eat solid foods. Pre-transplant, he didn’t eat very much solid food at all. We were all excited to see how much (if any) he could eat.

With his brand new kidney, Gavin was able to eat three meals, eat lots of different foods, and spent more than an hour at each meal eating!!! It was and still is incredible.

Gavs is in good spirits and is recovering well. If all goes well, he will probably be out of the PICU in a day or two and out of the hospital in 7 to 10 days.

Jill’s recovery has been slow, but progressing everyday. She was able to visit Gavin and his good news continues to help her recovery process.

Thank you for all your continued prayers and well wishes.

Jay Winslow

Just wanted to give an update to everyone. Both Jill and Gavin are doing really well! Yesterday was the first time that Jill got to hold Gavin which was amazing! Both are recovering and working on building strength! Gavin even ate some food yesterday, just another great sign!

Thanks to everyone for their continued prayers and well wishes.
Sally

Here are the newest photos of Gavy with his brand new kidney!

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Jill continues the road to recovery and has been able to walk a few times. As you can imagine, Gavin’s good news really helps with her recovery.

It has gone amazingly smooth so far and I couldn’t have envisioned it going any better. It has been good news on top of good news, and all of Gavin’s doctors and nurses have been wonderful.

Gavin now needs his body to adjust to a new working kidney. But right now, I couldn’t be happier about how things have gone to this point. Thanks for all the support throughout our journey.

Jay Winslow

The doctors had to remove part of Jill’s 12th rib and she had a little extra bleeding, but they were able to stop it quickly. When Gavin’s surgeon came into Jill’s room, Jill was lucid enough to ask for her glasses and ask how her baby was doing. All good news!

Gavin’s surgeons, as well, are very pleased with how Gavin is responding. They have now taken him to x-ray to make sure his central line is in place correctly. Gavin’s surgeons are very happy with his progress.

Thank you for all of your prayers and well wishes. We can’t tell you how much we appreciate your support. Please continue to pray for them as they recover.

We will update you with any other details as they come to us.

God is good! Believe in miracles, they happen every day.

Kristin Carpenter, proud cousin and webmaster of savebabygavin.com

Thank you to all who have already posted notes of encouragement, prayer, and well wishes for Jill’s and Gavin’s upcoming surgeries. It means so much to Jill and Jay to have such support from those who have been touched by Gavin in some way.

If you have not done so, we encourage you to send your love electronically through Gavin’s website. Please post your messages to Gavin’s Guestbook, or you may also send personal email or electronic card links via the “Contact Us” page of Gav’s website. All of those cards and messages will get to Jill and Jay personally.

On the advice of all doctors involved in this process, Jill and Jay cannot allow any visitation (other than very immediate family) at the hospital or their home for a minimum of 6 weeks.

Also, no plants or flowers can be sent to either Jill or Gavin because of Gavin’s immunocompromised condition. For those of you who wish to do something special, please consider donating to a children’s charity in Gavin’s name. Some special charities, chosen by Jill, are listed on the “Donate Now” page on Gav’s site.

Thank you so much for all the love you’ve shown to Gavy, Jill, and all the Winslow and Schwalbach families. We will post updates on Jill and Gavy’s progress on the site as quickly as we can to keep everyone informed. We ask for your prayers and support and to keep walking with us on Gavy’s incredible journey.

It’s time for miracles. May God and the angels watch over our special angels. And as Jill would say, “May your prayers be heard and may you cherish all that you have! ”.

Kristin Carpenter - Proud cousin and webmaster of savebabygavin.com