“Twas four nights before Christmas, when all through the house,
Two kids were a stirring, and rocking about;
The stockings were hung by the chimney with care,
In hopes that St. Nicholas soon would be there;
The children were wide eyed and waiting all snug in their beds,
While visions of footballs and cars danced in their heads;
And mamma exhausted, and I in my Cubs cap,
Had just settled down for a long winter’s nap.”

The countdown has begun for the big man in the red suit’s arrival, with amazing accuracy, thanks to the once a night chocolate from the advent calendar. We’ve been having so many giggles with the change of weather, shoveling (a lot), making snowmen without carrot noses (since Lauren is convinced those are the carrots that taste the best and can’t resist munching them), sledding and doing cannon balls off our porch into the massive piles of snow that cushion the plunge.

Lauren is keeping a close eye on Jay. Santa told us that Jay ate some of his cookies last year… so Lauren has him on a strict one cookie a day diet to ensure that Santa gets his proper due. Poor Jay, lucky me! We thought that Gav wouldn’t fare well on Santa’s lap, however, he ran right up to him and perched himself on his leg like a bird on a wire. It was the post leg removal that was traumatic. Santa gave the kids a small gift to take home with them, and Gavin cried, because all he wanted from Santa was a football and he received a McDonald’s happy meal toy. We assured him, that Santa is just giving a small gift for now and the others come on Christmas…he’s a little skeptical.

Of course he needs a football, since he eats with one, plays hungry hippos, and sleeps with one. He also wants to be a football player when he’s big and has footballs up to the ceiling, but what is one more football? Lauren, also wants a real car. She said Jay could drive it. I am sure that a car with a chauffeur is on every 5 year old’s list this year. We told her there probably would not be enough room to park a car under the tree in the living room, a car would be impossible to fit down a chimney, and so she might want to think of something else…maybe something smaller, like…diamonds or rubies or something equally simple befitting a five year old.

Gav’s numbers are looking good, and for the first time ever, we have one month off before his next set of labs. This is awesome, however somewhat scary since you become so dependent on the numbers to tell you about rejection. It’s like when we first take him home from the hospital, you feel so relieved to get out of there, but then you realize there is nobody else watching him except you. We are dealing with a nutrition watch as he has stopped gaining weight…so we are trying to give him more foods that have higher calories to try to offset nutritional supplement. This is the month for sweets and treats. For the last month, we have been hydrating him at night via the feeding tube, but with water, not with calories. Hopefully we can stay on this path.

Happy Holidays to all, may this coming year be even better than the last!

Love,
Jill

How is it that the days can sometimes feel like they can take forever, but the years seem to go flying by? I can’t believe that we are into November and the snow is beginning to fall and the mismatched mittens and itchy wool hats are being retrieved from the basement to be thrown throughout the house at the end of the day.

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

Gav’s eyes are actually shaped like footballs as he watches the Packers play. He actually wants to watch ESPN game highlights over cartoons in the morning (he is so his daddy’s son)! We better ease up on watching Farve or we may accidentally make him a Jets fan! He even fake tackles himself and sometimes prefers to play by himself and shows me where I can sit to be a spectator (because of course what is a game without a true fan!).

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:

Woo Hooo Baby! It’s Gav’s six month transplant anniversary today (July 3, 2008) and we couldn’t be happier! This is a big milestone for him and we are definitely celebrating!

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 have had two overwhelming experiences in the last couple of weeks and I guess we are just getting our sea legs back a bit. Gavin was just diagnosed with Alpha-1 antitrypsin deficiency (Alpha-1). It is a genetic disorder which may lead to the development of lung and/or liver disease or failure of either of the organs.

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 http://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

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