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