You know how you find a small piece of thread dangling out from your clothes and you go to tug it off and it all comes unraveled at the seams…I feel like that tightly wound spool of thread, slowly unraveling until the spindle drops on the floor. You’ll have to forgive my lack of inspiration today, while I know that we are lucky, I can’t help but lose perspective the night before surgery.

The enzymes have not disappeared and I had a long talk with Gavin that he is only allowed one organ here and that he is in charge of making sure everything else is in working order. I’m scared to what they will find. I feel like no matter what it is, it won’t be good. His biopsy and surgery are scheduled for 3:30 today. Its supposed to be a simple day procedure. I love that word in there, simple…IV, ventilation, no food no drink, drugs, needles, incisions…simple. Nothing with Gavin is ever simple.

The bell is ringing once again, fight baby fight, go Gavy go! May God be with you as we sit by your side…

Jill

I can’t for the life of me make cook-and-serve pudding and that the word ‘moist’ and pink/red color combos (exception v-day and kids apparel) repulse me. It’s these type of oddities that concern me while I am going to be stuck in bed recovering…not my own neurotic ones (unless my hospital gown is pink/red), but those of my kids. The ones that you adapt to as a mother without even realizing that you are doing it…the rituals and routines that you make up to suit your kids that seem normal to you, but odd to others…being out those six weeks for recovery, that is what will be the hardest. You can’t just tell someone their oddities, you just know them (if that makes sense) and it’s missing the new ones that form, that I will miss so much.

Like Lauren the other day, drilled into me for never taking her parachuting (oh all the ways I have failed her)… and I know that it’s not something that I can explain that many four yr olds have not gone parachuting, “no mommy hasn’t pushed you out of a plane with only nylon pop tent on your back (yet)…”, it’s something that I just say, “maybe we can do that next week” and pray that next week she forgets about it, and if she doesn’t, I tell her that they are all closed for the season, or that all the toys in the department store are for kids 6 years and older today and today only and so instead she makes a list for me, or that Lauren stalks the neighbor kids and is getting hesitant to ride Petunia because she had an “almost” fall into the grass…that Gav likes to eat chalk and spits out almost all real solid foods, but is particularly fond of green things and flavored breads and most recently is diggin’ raspberries and strawberries. That he only likes to wear his dog shoes, but he hates socks…there are just a million little things that they do that you only know…it’s funny how quirks are some of the greatest things about people…it’s their peculiarities that make them interesting.

Gavin is going to have a surgery done on the 18th and with it being so close to transplant it’s just another obstacle from our ultimate goal (scary)…then today we went in and his liver enzymes are elevated (terrifying). We don’t know the cause and this is VERY concerning. We meet with another “ologist” on Tuesday and they are going to recheck his levels on Monday to see if there are any changes. Pray that these enzymes go away. He’s been throwing up so much now at night, in the middle of the night last night Lauren said that even she is starting to get concerned about him and feel bad for him. All these things need to be remedied in order to make his transplant date of September 27th fall into place. I don’t think I can handle anything standing in the way of transplant. I won’t be happy, I won’t feel like this is really happening until I am laying on the operating table, there are always just too many variables. I have come to terms that this is the path that he must take in his life, now I just want to execute the plan and get him healthy. I am no longer scared or hesitant, but ready to see him feeling strong for the first time in his life!

Its been a rough, sad week, we try to practice mental toughness in this house, but this week the sky came falling down. We lost our very dear sweet baby Rory this week. He is our infant neighbor and will be forever in our hearts and thoughts and his remaining family hugged firmly in our arms. If you look closely, you can see his halo glowing out there in the distance as God rocks him to sleep…we love you and we miss you! May your prayers be heard and may you cherish all that you have!

Jill

Well, we are in a hurry to get nothing done. We have a long “honey-do” list, but it just seems like it just keeps growing and the check offs aren’t coming! Gav is doing pretty good. He’s vomiting quite a bit again at night, but we are increasing his epogen and I think that is what he is allergic to. Unfortunately for him, we can’t stop, because then he would need a blood transfusion before transplant and that would really complicate transplant.

We just can’t wait for the 27th, everyday that goes by, we do a little happy dance! Gav is starting to say “no” and “ouch” to pretty much everything. He’s starting to become a little more interested in signs, and is signing “more” now, and we are working on animals and animal noises. We went to the zoo the other day and he loved it. The monkeys were his particular favorite, along with pretty much every other animal that we saw. Gavy was doing his signature joint hand/foot clapping, which signifies his ultimate baby happiness moment!

He is getting so much stronger and is starting to walk with his walker on his own. He takes about a good fifteen steps now and gets tuckered out and wants his mama, but he is getting ready to try and stand on his own as well. Of course I think this is the time. They say that he will feel so much better after transplant that it only takes him around three days (barring no complications) to want to take on the world. I am a little nervous because he is going to have a blood draw cath from his neck, that comes out of his stomach. I hate those lines, anything that we are responsible for that could cause him to bleed out, just freaks me out, so I am getting increasingly anal on trying to find ways to uber-organize our lives so Jay isn’t so overwhelmed (which I have to say I am failing miserably at)!

Lauren just started her 4K on Thursday, which is good since she wants to become a Polly Pocket someday (I told her Polly Pockets have their doctorate degree, so she’s ready for the educational haul). She came home spinning and clapping and saying that she met a new friend already. I think that will be great for her, a little structure and out for a couple of hours a day in the midst of this chaos. It’s already coming in handy because she is coaching me with my balance ball exercises, she said she can help, just like her teacher (look up to the sky, follow the teacher, you’re not doing it right mom… it’s an interesting work out with her). We watched a movie (Lauren’s ultimate indulgence), Mary Poppins, and she decided that she also needed a red umbrella, “so I could fly away when I didn’t like your attitude to Grams house.” Sometimes, seriously, I can’t even believe what she comes out with.

Jay is super excited now that football started, and has joined about 168 fantasy leagues. He is also very tied up in the baseball chase between the Cubs and Brewers, which I hear about everyday, I think I may be able to commentate about it on ESPN. He’s a proud Papa now that Lulu’s in school, he came back early that day to see her when she got out, so he brought the spinning little school girl home. He is getting used to my new hair, I cut off ten inches and donated it to locks for love. We have to get the minivan fixed again because it’s making a monstrous noise, which I can not tune out by turning on the stereo(insert a good kick to the minivan here). Car repairs are high on the list of “strong dislikes”…the “hate” word has been ruled out in the house now, so we can only strongly dislike things…

Jay and I would hope that if you’ve been moved by Gavin’s story through his website, please write him a special note in his guestbook before his transplant surgery set for September 27, 2007. We will print out each one and read them to him the night before his surgery, so he knows who is all praying for him and how he has touched their lives or encouraging words, whatever moves you…for now, we are putting one foot in front of another, and awaiting another miracle! May you see beauty in your day!

Jill

Hold the plane, the itinerary has changed! We have a date, da da da da———-September 27th, and we are staying right here in Madison! We have somewhat tweaked the steroid free protocol and are doing what our surgeon compared to “a Lexus” type treatment. Best proven outcomes with the lowest risks! We are so happy to be doing it here with a team that we know, respect and trust.

Gav is starting to get quite interested in talking and has proven that he knows his facial features. I also asked him to get me a diaper and he brought it back with such pride, now if I could only teach him how to change it. I actually thought about teaching him to help me take it off, but then realized that I would be chasing after a naked bottomed baby for a good majority of my day and passed on that thought! He is starting to eat again, little bits and pieces and is obsessed with walking.

Lulu is desperately awaiting her fourth birthday party. She actually told me that she is “giving up” on her birthday since “it is never coming anyway.” We shopped for her plates and cups on Monday, so I am sure that Sunday seems like an eternity to wait for the actual party. She has decided that she wants pretty much anything ever made in the toy departments of Kohls, Target and/or anywhere that houses toys and whenever we go anywhere, she asks me to add things to “her birthday list”. Never mind the torrential down pours that we have been having, we won’t need a water slide for this luau, we’ll just give kids a raft and they can paddle through the yards!

Kid rules are starting at the Winslow house. You know, the super long ones that don’t make any sense to adults, just other kids. Gav had a toy and Lulu swooped in like an eagle spotting her prey and took it away. I told her she had to give it back, he had it first. She then informed me “no, I had this toy yesterday.” It just made me laugh because it brought up all the rules that kids make on their own between siblings. Like the TV remote – when I was little, it was the most cherished possession on the planet. It had to be like on your left knee facing where the sun sets turned upside down and you had to be sitting cross legged, otherwise it could be taken away and your precious cartoon changed (and thanks to my mom, only two shows a day between five kids were never agreed upon, parents, ugh). Come to think of it, I think that my older brother and sister made up new rules each time one of us younger on the totem pole had it….they always had control of the channels, hm mm, interesting revelation (I’m onto you Mike and Cary!)

Well, we are very excited at this point to have the finish line in sight, lots to get accomplished prior to, but we will start that next week! It finally feels real! Hopefully this goes smoothly. Yesterday I was thinking about how different our life will be. We will be able to do things, not worry about time or ten hour machine treatments, not scrubbing in, no blood pressures twice a day, pools, camping, vacation, it’s going to be like getting freedom back. We are so lucky, thank you thank you thank you God, may You continue to watch over us!

Jill

“Star light star bright, here’s the wish I wish tonight: To ride a horse and curry comb her BY MYSELF and that Gavin gets a new kidney.” Lauren Winslow 3(and 3/4) yrs old.

Well, put me in a backless gown and lace up my boxing gloves, I’m ready to share my spare! Gav is 22 lbs and we are looking toward the end of September for transplant in sunnyside up California. Lauren feels good about our decision, since, “they have better lemonade.” (I just want to note here that we have come to this decision because of the follow up drugs and not because we don’t have a wonderful team of doctors right here. We just feel, for our son, it is the best fit for him and it in no way reflects on our feelings towards the team that manages his care here, we love them too, they are wonderful.)

Things have been busy here: with a spontaneous rummage sale, a quick fix landscaping project to center my mind, a two-kid flu bug and a radiator blow out in the mini…we’ve managed to stay a little too preoccupied! Gav’s got another hydrocele, so it looks like we may be doing a surgery sometime soon. It seems to be bothering him more and more and he’s waking up again and vomiting in pain. It’s horrible to watch and it’s affecting his eating, sleeping and overall jovial mood.

He has started to use two word sentences, mostly “my ball” (ahh, the mine stage!) and has learned to wave. He is fascinated with his hand movement and sometimes watches himself do it so intently he “bye-byes” himself right over. Whenever he gets very excited (for example, dog sightings) he “hi-hi’s” himself silly! He is also totally feeling anything that is ice cream (I think we see three teeth tormenting him at his gum line) and not only wants to eat it, but he has to be the one holding it. Gav is also drinking out of a regular cup fairly well. He’s great at drinking the initial sips, but gets distracted and dumps the rest. He’s managed a week in the hospital this month and a catheter change out since he dove for the kiddie pool. We were on several antibiotics all at once, it was a pharmaceutical circus.

We had one dejected little princess come up the stairs this morning, and when I asked Princess Lulu what was wrong, she told me “I look hideous!”(I said, excuse me, you mean gorgeous). Apparently, her crown had gotten smushed from being stepped on and she felt that they would have to “cancel” the ball, all the kids would be sad, and now, she was faced with a life of being single because no Prince would marry a princess with a broken crown. It was at this time that I gave her “the talk” about how she doesn’t need a prince, she can be anything that she wants to be, and the crowns that are broken are the coolest crowns in town. She then turned on her purple plastic high heels, gave me a crazy look with her eyes plastered up to the ceiling because she couldn’t roll them anymore, and went back downstairs.

Lulu is busy planning out her 4 yr old luau party, and has informed me “the bigger the better”! She said she is excited about turning four, but can’t wait until she is five, because then “I will rule the world!” Big responsibility for her at five yrs of age, but I have faith in her!

Jay and I are trying to get everything all figured out for the impending transplant date and we are excited and nervous. Gav seems to be doing okay right now (if we fix the hydrocele) so it’s hard to imagine allowing someone to take your baby and do all this when they seem ‘fine’. We are trying to get everything streamlined so when I am out of commission, things will fall into place smoothly. But it’s almost close to impossible. Just too much too quick and it’s a bit, quite a bit, overwhelming. We figure if we stay on course with no problems, we will be home in time for a white Christmas back here in Wisconsin. Hopefully, with two happy ‘healthy’ kids, that will be our greatest Christmas present yet!

Jill

Plane rides and toddler/infants does not equal flying the friendly skies, but we did it, and we learned a lot. Jane Godall said that if we only look at life from our perspective it’s like trying to see the ocean through a rolled up newspaper (something along those lines, I am not sure where my book is.)

We got a new perspective on Gav’s case and met with the guru of pediatric transplants who has since retired at Stanford. We have a lot of thinking to do and a lot of questions, but we better get a move on, since Gav is putting on weight quite rapidly! He broke out of 20 lbs and is at 21 lbs. He has also decided he is too sophisticated for sippy cups and likes open adult glasses with straws, and pretty much anything that anyone else is drinking.

Lauren loved the “pom pom” trees (or to the rest of us, palm trees) and the pool (her utopia). Those were the top two…she also told me that she does not think that I am funny anymore so I should stop teasing her (I may or may not have had her looking for care bears on the plane, but who knows it could have happened, anything could have happened) she was not amused. She also said that she loved the weather until Jay told her it’s like this all year round. Then she started to cry for all the boys and girls in CA because if there was no snow, that must mean there is no Santa for them. Four year old girls are emotional, they should write a heads up manual per age. We set her straight, and she did recover, but it was quite devastating there for a brief period of time. We had a lay over each way in Denver and Lauren called it Calarada like “o’s” don’t exist…we found it adorable so of course we made her say it like a million times. We lucked out and saw fireworks over the capital on our homecoming (which we of course told her, were set off for her and Gav).

Gav did very well, except for the fact that some people who sit in economy seating still think it’s okay to recline their seats (it’s not) and he may or may not have been able to grab a few fistfuls of the so aforementioned passenger’s hair “on accident” when this gentleman was sitting on my lap (I mean reclined in front of me). Gav is into hats right now and pointing. So he really doesn’t care for hats that fit him, just other people’s. Maybe it’s actually a way for him to tease other people as they walk around with hat hair and he’s all cute with this oversized lid on his head. Gav is a pointing machine and really likes to tell you what he wants. When he gets really happy he claps his little feet together! He did really well on the plane, they both did, for that matter, a little rough on the final leg(ok, way rough), but if it would have been socially acceptable for a thirty year old to throw a temper tantrum, I may have as well…it was a touch exhausting.

So exhausting that for the first time ever in Jay’s life he went to bed without knowing if the Cubs had won or lost. Stanford and CA were beautiful! It was so amazing to walk to the park out there and basically be surrounded by a flower shop. From a wanna be
gardener, they have amazing flowers out there. (Tragically, I don’t think they have my picture by a register saying don’t sell flowers to this woman because many have tried and just not survived.) It was a great trip, and it was just nice to know that we accomplished it with like 8 bags of luggage for four days, but a lot of hard work and planning and we made it out there with everything that we needed.

I think that we learned so much that will come in handy with Gav’s transplant, and what to expect. I guess I had figured that we had been through the worst of it, but it seems now that may lay ahead…hopefully we will find some reserve strength in here somewhere to plow through it and there will be some angel floating above Gav, since there is no other acceptable option. The first words out of their mouths were that there are no guarantees. “I don’t buy anything without a guarantee,” I told them. And continued to let them know that they will have to work on that…humor went unappreciated again (they however, were not four).

We’ve given ourselves a week to decipher our options, about what we want to do, where we want to go. I wish I could have a conference call with God and all his doctors. How are you supposed to make this kind of decision? We are leaning strongly one way for a strong fifteen seconds, and then the other the next. Regardless, it’s so good to be home and back to life at the house. Sometimes you forget how good you have it, but there truly is nothing like coming home! Still a little heady, so I am not going to go into specifics at this point, but we should know more soon!

Jill

Whose baby is this? My kitchen floor looks like my shirts…there are food stains everywhere, from none other than Gavin. It is amazing, we are going on the second day of this and I still can’t believe it, Gavin is feeling better and is EATING, actual real people food, chewing, eating and SWALLOWING it! From peanut butter, cottage cheese, bread and butter, noodles…he actually ripped the hot dog out of Lauren’s hand today at the Farmers Market and ate the bun. He also is going up and DOWN a whole flight of stairs…I think I am in shock. Gavy’s transformation is like magic… “Boop”, I’m better and I can say the word “no”, and sign the word “fish” and climb stairs and eat—-we are treading lightly from one miracle to another! I think that I have to re hinge my jaw, because just typing it, I still drop jaw!

Lauren and I have checked out a French teaching CD and are learning to speak “Madeline”. I can now tell you the “wee wee” is actually “oui oui” and she officially can say my name is, hello, good bye, please and thank you about 25% of the time…Jay is convinced that I should be teaching her Spanish, but seeing how I don’t speak either, there is little I can actually do but learn with her and promise her that this will come in handy when she is thirteen and doesn’t want me to understand what she is talking to her friends about on the phone!

Lauren waffles from excitement to sadness about going to CA. She doesn’t want to leave her friends (she is somewhat convinced that they MAY move while we are away). Today she came down and said that she packed her bags…she packed a solo Madeline book…Jay asked, “Lauren, what are you going to wear then?” Lauren said, “I packed my head.” I think now I should let her pack for the rest of us, since sometimes I think I’ve lost mine.

It’s funny, we meet with a lot of “medical professionals” and what Jay and I refer to as “ologists” (anyone with a specialty) and I often wonder if they get a class in med school explaining that the parents of sick kids are totally insane (this probably goes for parents in general, because when I used to teach I saw this as well). We may not act like it, you learn to bluff the normalcy, but really you are insane…it’s your kid and your prerogative to think that they are a hilarious genius who may model while they build their career to the presidency, while creating world peace on the side…so we will see how well we can bluff cool calm and collected in CA, we have to pack our heads!

Well, I better stop typing and better start packing (it’s like the oh my, I have so much to do, but I am just frozen because I don’t know where to begin). I think it was Bob Hope that said “I think that I have been to almost as many places as my luggage”, so we have to figure out the necessities for carry ons and leave nothing to chance!

Jill

July 3,4, 5, 6th we spent inside the Emergency room for Gavs (luckily each night we got to take him home with us)… I just cringe thinking about it… he got really sick this time, fevers up to 103 on Tylenol, I woke up one morning and I thought that he wasn’t breathing… it was terrifying, just hit home again just how sick he is. Like everything in life, things after awhile become normal, and his disease is just a normal part to him, but to see him so lifeless just laying there was shattering. As I was driving him in I was praying to God to take care of my baby, and basically promised him everything under the sun if he can just grant me this wish! His little arms look like pin cushions but now we found our new “go to” people at the blood lab so that shouldn’t happen again. Six tries for an IV line on him this time, I could hear him screaming in my nightly nightmares.

He just started to turn the corner today, broke his fever and now has a full body rash, took him to urgent care today and they are not concerned about it. As he gets older it seems to be more traumatic. He doesn’t want to be set down still, and I woke up this morning and could barely get up because my back hurts so bad. When he’s in the hospital he just wants me for comfort, and he won’t let me sit or put him down, the only place he feels safe is in my arms. I am glad that I can offer him that, and when it’s your babe reaching up to you, you always find the strength to pick them up.

Lauren got to see her fireworks. Her and Jay laid out and watched the show from our front yard, I was too tired and didn’t make it up for them, always next year! Lauren loved it, you can just see the sheer happiness splash in her brown pool eyes! She has perfected the art of, “just another” before bed to keep awake just a hair past our sanity point. The other night she asked Jay for a glass of water and said, “we kids are a lot of work aren’t we?” Jay said “you’re telling me” and Lauren’s response was, “well, I have to stay hydrated.” With that Jay slid one sleepy foot in front of the other and got her a water, Jay 0 Lauren 1.

Lauren has also started to speak French thanks to Madaline. Today she was telling me in the car, “if my friends ask me if I can play, or if I want gummi worms, I can say ‘wee wee’”. Genius, friends and candy and a little French, can you get more cultured than that?

We are going to be looking at Lucille Packard in CA they do the most pediatric transplants for kids under two and have a very high success rate. Its been an experience, and hopefully all this planning will make for an easy travel. It will be the first time for the kids on a plane, and hauling all his medical stuff with us is going to be a project. We are very happy where we are now, but the CA program does more and has a longer steroid free treatment program that has been done on infants. If we decide to do transplant there, we will be out there for 100 days, but they have a Ronald McDonald house for us to stay in and where there is a will there is a way. Gav will be in the hospital for almost all of it, I will be recovering in some strange place (it will be a longer recovery since it won’t be laparoscopic, kids under 5 do better with the old way of removing the kidney, so that’s what we are going to do), but again, you do what you need to do, and hopefully the sun out there will give off some comfort. There are a lot of loose ends with all of it, but we will do whatever is best for our little man and our little girl. Just looking forward. After this stint in the hospital with Gav there is no more fear, just anticipation to seeing him feel better. It’s kinda like when you are pregnant for the first seven months you are scared for labor and in the end you’d do just about anything to have that baby get out of you.

My brother, his wife and son are in from Oregon so we are busy trying to get some quality time in with them before they leave. There is nothing like family! Take Care and may there be rainbows in your tomorrow! (we really need the rain!)

Jill