“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!
Congratulations, Winslows, it looks like you’re poised and ready to come down the home stretch of the transplant race. What a journey you have all been on. I couldn’t be happier for anyone on the planet right now.
Look forward to hearing more news. Enjoy the rest of the summer, and know that you are always in my thoughts.
Best wishes on your trip to California. You and Gavin will be in our thoughts and prayers. Hopefully, the sunny weather will aid in a speedy recovery.
Your journal is absolutely amazing, your positive energy is so refreshing. I look forward to hearing more news.
Steve, Tracy and Morgan Beyer
God bless you all, I have a grandson Gavin also he is 23 months old. You will all be in my prayers.