Today was one of those days that you just want to freeze frame because it was perfect. Lauren woke up and we showed her the first snowfall and she was already running to the closet to get her snow suit and light up boots. Gavin on the other hand was a little blinded by the light of the first snowfall but was swinging his “happy hands” and doing his new found heavy nose breathe at the sight (with the wrinkled nose it’s quite cute). We built snow castles, snowmen and snow angels and it was great to be outside and enjoying the day.

I am somewhat convinced (delusional) that Gavin says “momma” at night, and Jay agrees with me (or says—so I will be the one to get up) but he seems to be getting out of his sick funk. This virus had Gav tied up for like three months—-it would go away and lurk and come back in days, but he is eating three meals a day again so that is good since he took last week off (ugh).

We followed up by Christmas shopping, Gavin was entranced with the hanging things from the ceiling and Lauren, at first, really enjoyed picking out gifts for her friends until she realized that we were not buying one for her and one for her friend.

We’re trying to get ahead of the game because we don’t know how long we will be ‘out of the world’ if you will with Gavin’s recovery. They think Gavin will be in the hospital (love/hate that place) a minimum of 5 days. As of now he is to be in surgery on November 15th, starting at 11:00 a.m. It’s still looming out there, I already tried calling the surgeon to discuss how necessary this surgery is…still necessary. I do love this surgeon and I wonder how many crazy calls these doctors get from parents trying to convince them not to operate. Thanks to Mory and we have decided against the g tube for sure. We read three articles supporting our decision…it just is also a reminder to be your own advocate, ask questions and go with your gut as far as the medical/life issues are concerned.

Anyway, I am going to tuck my two sweet little snow angels into bed and snuggle into a good book (that is taking me like four months to read, but its funny!) Anyway, I hope that you are enjoying your lives, once again…we love you and thanks for your support—-we are blessed beyond blessed to have such wonderful family and friends!

Gavin almost got traded today, this is the second time Lauren has tried to barter him off—the first was after we couldn’t take a red Sentry balloon home (Gavin has latex precautions) and now she decided that she would swap Gav for Annalyse since she doesn’t have a sister at home.

Gavin drank out of a sippy cup today very well, which gives me hope that I may be able to leave the house childless for more than two hours some day in the near future (sweet!) He seems to be having some reflux issues, but the antibiotics seem to be helping. The growth hormone injection isn’t so bad (easy for me to say) but sometimes he doesn’t even notice that I am doing it, especially if Lauren is running laps around him (he’s probably thinking pick me up you crazy mom). He is a BIG fan of frosting (don’t tell his dietitian (but he snuck a lick) now he’s convinced that everything that I put in my mouth (oh, I just got my hand caught in the cookie jar there) is something delicious that he must have so he flings his happy hands around until he gets a taste. This is working well in getting him to take some more solids, I just pretend like I am going to eat his food and then he is all up in their trying to get his taste on!

Hope this finds you all enjoying your weekend. We have Jay’s brother Lance and his girlfriend Joanna coming to play with the kids while we do, operation clean up (a Sunday ritual) – to try and stay organized before the week begins. Having a sick kid has even made ME organized (for those of you who know me that is an incredible feat). My friend Sam is coaching me on the how to’s of organization (something she has wanted me to do for years, especially when we lived together in college). Anyway, I am off to try to make some food that will last the week, Cary said she made swiss steak and now I have to pull out the crock pot too! Love you, Jill

Well the antibiotic vault has been opened for Gavs, after two months of a stand off with this cold, we have finally been put on amoxi to help fight it in hopes he recovers in time for surgery. Remember when we were kids, if we even thought we were getting sick we would be put on antibiotics just in case—-gotta love how things change. Last night they had a wine tasting event for Gavin that was beautiful! We were once again overwhelmed with heart warming stories (a family who had a child who was born with fluid in the brain, struggled with learning disabilities and now is in college, what a testament to the human spirit) and generosity. I was not able to attend since Gavs was sick but Jay told me all about it and the people that touched him that night. Thank you to the volunteers who worked tirelessly and to all those who came to make the event so much fun!

To G tube or not to G tube that is the question. After a lot of research I am still torn on what to do for Gavin but am leaning towards not putting in a ng tube. The decisions are hard to make, but we can always do an ng tube vs one surgically implanted when we need to. There is just a lot of risk to putting in a tube when he has his pd cath in place, the main one is that it doesn’t have time to heal because he will be back on dialysis within days.

Other than that he has been diagnosed with something new- a serious dose of cute! Last night I propped him up with the pillow brigade around him and he the cell phone, remote and a light-up book all the while giggling at himself. Seriously, can you love anything more than your kids?

He’s started the growth hormone for two days now, we are supposed to see about 4 inches in the first year which would be great for him, so let’s keep our fingers crossed! Hope this finds you all well and looking forward to something fun over the weekend! May all good things come your way! Love, The Winslows

(Flu shots—Gav’s doctors have recommended that people in close contact with Gavin get a flu shot.)  Growth hormone approved! Well it was approved, and then they did take backs, and then it was approved again, so after jumping through some hoops and a lot of phone time we should be getting a shipment of his shots starting next week! They have decided to insert a g-tube at his Nov 15th surgery. Not going to comment too much on that because it makes me somewhat nauseous still at this point—another tube sticking out of my son—but it will give him added nutrition so that will help him get to transplant weight sooner. Our neighbors, the Porters gave Gavin his pea in the pod costume for Halloween, isn’t it adorable, he is our little sweet pea! Gavin got a new cousin this week, Annalyse—she’s super cute and Sally is recovering well too! Not too much else new, just trying to get mentally prepared for this surgery and get everything organized. Gavin is diggin the lit up pumpkins! Looking forward to Halloween! Hope all is well! Love ya, Jill

The growth hormone was rejected Weds for Gavin so we are in the process for appeal, its pretty devastating. It is normal for kidney kids not to grow on their own, and the insurance is not convinced yet that it is medically necessary even though he has only grown five inches since birth and is too low to even be on the growth chart. This was an unexpected roadblock and its been a rough week since we found out on Weds. Its so frustrating to be begging all the time for your sons life, its like isn’t having to do therapy, nursing, 15 medicine doses a day, ten hours of dialysis a night enough now I have to prove to you that my son can’t grow, and you know that you are never talking to the person that makes the decision, just some poor customer service person who has no control to help you and feels horrible for you, but can’t do anything. I feel so mad and frustrated today, I keep wishing for all this to just go away…for Gavin to just be able to be a little baby and not have to fight this,its so overwhelming. I’m worried, only 50% of babies on dialysis make it to transplant and insurance companies that stand in the way of him making it there is unbelievable, I would like him to grow and start gaining more weight so that if anything goes wrong during his surgery on the 15th he will be big enough to survive on hemodialysis. Anyway, I am going to get back to the kids, but just wanted to up date you on the latest. Love ya, Jill

Surgery date Nov. 15(pray pray pray) for his bladder, not his transplant (just to clarify, he has to get bigger to get to transplant), dialysis is not going so great right now, we are officially exhausted and Gavin, having recovered for one day, is now coming down with a cough—hence, he won’t be at a lot of activities because we have to minimize his exposure to these illnesses. When it rains it pours! On the upside, he has figured out how to roll off his stomach(that is how much he hates tummy time) and is getting super strong with his sitting (somewhat top heavy so still a little tippy, but its adorable) Same infectious smile and the sweetest little disposition I’ve ever seen! No teeth yet, but we are on the watch! Hug all those you love! Miss ya and love ya—the Winslows

Hi everybody! Gavin has a cold that he can’t shake…but I am hoping that we are at the tail end of it. Last week was crazy, we were at the dr’s mon, weds, fri and in the emergency room at 1 am on Sat, we didn’t bust out of there until 5 am the next day and Lauren had an emergency sleepover at Grammy’s house (which of course she loved) Hes having some urological issues that may force their hand into early surgery so now I am trying to bulk him up, he has lost about a lb. with this cold so its an uphill battle at this point. He is still only 14lbs and 24 inches long. We should be getting trained next week for a growth hormone shot that we will give him daily. Who knows, maybe the NBA is not completely out of his scope yet (: He is beginning to think he is pretty hot stuff and getting into rolling (hes very proud of himself once the roll is complete) His sitting is getting awesome and he really wants to do a lot of new things. Sometimes its easy to forget that he still has the mind of a 8 month old even though he is in the body of like a 3 month old! I’m still coaching him on the mama and I think we may be getting our first tooth soon(he is like a sea urchin, he sucks on everything with such desperation, Lauren is calling him a “sucker face”, he got me so good on the chin he left a mark!). We wanted to say thanks to everyone again for all their love and support, it means the world to us! I love reading the messages, they tend to be a highlight of my days! I heard a couple of quotes that are pertinent to my week this week: Fall seven times, get up eight and its only in the darkness that you can see the stars. Hope all good things are coming your way! P.S. I think Lauren is torn between carebear costume or cat (BIG delima) and Gavin is still undecided in the costume area, but I’m thinking pumpkin!