Gavin

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Gavs Goes in for a Liver Biopsy Tomorrow, Please Pray for Him.

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

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A Mom’s Birthday Tribute To Her Special Two Year Old!

Lauren: (Fists and Teeth clenched) “Ahh! I am really getting upset with Gavin.”

Gavin:(Still doing what is frustrating Lauren despite her repeated requests to stop, and getting equally frustrated with her being frustrated with him.)

Mom: (typical mom speech) “You know Lulu, he is smaller and still learning how to play with things.”

Lauren:(exasperated with me)”Mom, he’s not a baby anymore, he’s two.”

So is the downfall of the “baby” and the entrance of the toddler. Gav turned the magical disaster of two and is exploring his new found freedom with more aggressive “mine’s” and assertive “no’s”.

He has started walking and is just picking things up like he has been doing them all his life. He has some new Elmo shoes he loves so much, and when I take them off he tries to put them back on himself. We call him his “lifts” since he seems so much taller in them.

In his slide show this year there is a picture of us reenacting a silly pose by statues, however they are a very serious set of statues. We saw them on Stanford’s campus when we went for our medical opinion and they have stuck with me as pertinent to Gav’s life. They embody six burghers of Calais during the hundred year war. The short version is that the burghers bravely sacrificed their lives for the rest of the city (this is not the part that reminds me of Gavin). The artist, Roden, who depicted them in their statue form took the opportunity to celebrate the idea that heroic deeds may be performed by ordinary people.

Gav, I must tell you that at two feet tall and two years old you remind me that ordinary people can do extraordinary things. The way that you have risen to life’s challenges and remain so strong and ferociously filled with life and love, you are a hero. An ordinary two year old living an extraordinary life.

My sweet Gavy Ry,

You have your dad’s charisma to never have anybody upset with you for more than five minutes, even when you are throwing your remaining food all over the floor to signify that you are ready to get out of your highchair. You have this crazy ability to make everyone laugh with your light hearted sense of humor and gigantic giggle. You love so hard that you have to try to hold four stuffed animals every night at bed time even though you have only a wingspan big enough for two.

May you continue to grow taking down the Mt. Everest-like challenges that stand in your way with each toddler step that you take. May you always find the lighter side in life as you do right now and may you always know how loved, special and extraordinary you are. Happy Birthday to my newly rambunctious two year old!

Love,
Mommy

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Gavy Has a Rough Medical Week…But Keeps Walking and Telling It Like It Is!

It has been a busy week—-I have rearranged my house 500 times, bought 1000 tickets to vacation hot spots and added a sun room so Gavin can play comfortably outside without having to worry about getting burned with his new meds, and lastly sold my house to buy an RV and travel the United States before Lauren hits kindergarten…in my head that is.

In reality, Lauren has been my companion and watched a little bit of America’s Next Top Model Marathon (I’m a sucker for marathons) and now has developed her own runway walk, that she calls “Hot Stuffin’” which has made for constant entertainment for her biggest fan(s)!

She is the water to Gavin’s swim trunks—- there is nothing that girl could do that Gavin wouldn’t think is the coolest thing on earth. He is starting to stand independently and is finding the courage to take a few steps again. His little chest puffs out bigger than the blimps at the Macy Day parade!

But boy oh boy does he have the temper. We call him the little “Tazmanian Devil” when things aren’t going his way. He makes no qualms of letting you know EXACTLY how he feels about it (which usually involves laying flat as a pancake kicking and screaming as loud as he can). That boy goes from calm to hot faster than Earnhardt can make it around the track! His new thing is trying to put on everyone’s oversized shoes and walk in them (hence the frustration, a baby can’t walk in a man’s size 11).

Lauren is totally in love with knowledge right now, she is so interested in everything! Especially nature, she’s going to be my little hippy! Thankfully there is the Internet so I can still make it seem like I know everything, and we look things up in the “Pedia” (Encyclopedia). I know I said I wanted to learn to cook gourmet, but for now Lulu and I have become crock pot champions…we have officially eaten through all the casseroles that we so appreciated!

We did get into a disagreement this week over a rabbit. There is a sole rabbit that is running rampant on my $3 end of season landscaping purchases from Home Depot. I vote the rabbit has to find a new territory, where Lauren strongly appreciates the tracks and their presence. Never thought I would ever relate to Elmer Fudd. Any tips to spray things to scare the bunnies? I’m down a hydrangea, an emerald something, and a burning bush. This is going to be like a 200 lb bunny!

Jay has been busy taking care of Gavin, who had a rough medical week. He was in the ER all Tuesday and has just had a lot of little things that add up to a lot. We meet with one of his doctors next Monday to discuss some of the complications, and hopefully it will give us a more clear picture of what is to come. We thought it was going to get easier post transplant, but it’s still a bit overwhelming. We think this part of the adjustment period may last the first 100 days and then it should taper off, but we shall see!

Jill

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Trying To Establish A New Routine…Relearning About This “Whole New” Baby.

Lauren says we owe Grams, Pop Pop and Julie A LOT of quarters for helping out so much after transplant (that’s what Lauren gets paid for her daily chore). Things have been in quite a state around the house with Jay taking on the role of Mr. Mom. It always makes me think of that country song where he learns about crayons going up one drawer higher and rewinding a movie 15 times. It has taken about a week for him to get into a good groove with the new cares and two wild children in tow. It’s always a process to figure out how to work Gav’s disease into life and then for it to become just an aspect and not the center of it. We are trying to establish a new routine.

Gav strongly refutes Daddy putting him to bed in his new routine and has like a five minute slug fest with him each night as the battle of the wills takes place between a man, a baby, and a rocking chair! Gav is starting to walk and move around more now, so some of his strength may be coming back. He has been doing amazingly well still, but we are still tweaking his meds and he has to go in three times a week for his blood draws (thank God for the hickman)!

It amazes me how animated he is now, it’s like we have to relearn this whole new baby. Makes us realize how sick he really was. He is not quite fond of me not being able to lift him, and it breaks my heart to hear him say “uppy” and see him so sad when I can’t, but we find time to snuggle up in bed and hang out next to each other on the couch.

Lauren is a busy busy girl with her Grams at her side…the two of them are just the best of friends. Yesterday they went on a hike around the neighborhood and researched the tracks in the snow. Lauren is convinced that two of the tracks are probably deer and the other beaver. All those wild beavers around here in the city—-it’s almost hard to believe, but the girl knows her tracks (:

I have some good and bad days, usually the mornings are pretty rough and the nights are rough, it’s hard to lay flat for long periods of time. I have watched more TV in two weeks than I have in a year and I have decided that I need to do Amazing Race, start running in half marathons, and learn how to upholster furniture while becoming a gourmet chef on the side. Also, I would really like to become a hiking, nature type family. So I have some things to look up at the library for all my new future niches. I feel that maybe I am in a mid life crisis, since I seem to switch between HGTV and MTV and feel that these two channels are not very similar.

Jay and I try to relax by watching season two of The Office, one of our new found loves. Hope this finds you laughing at the end of your days and staying warm! Go Pack Go!

Jill

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Update from Jill…Jill and Gavy Going Home Today!!!!!

Everyday since Gavin was a twenty week fetus we have waited each day to see if he would be alive the next day. We never planned ahead, we never let our imagination run wild with the future. I now can see a little boy with a life ahead of him…I can finally start to let my imagination go.

We have just experienced a miracle, one without explanation – and one not only medicine can explain…we have been profoundly touched and overwhelmed and in complete awe.

I will have to update you more when I am feeling better. There is so much to this story. Between my parents and their childlife program here at the hospital, Lulu really viewed transplant more as a vacation than a traumatic event, and she is actually skipping out of the hospital at days end.

I continue to get better and stronger and am weaning myself off the pain meds quickly since they make me very nauseous and a little loopy.

The best news of all is that Gavin will be coming home today with us. It will be a time of new cares and new adjustments, but he is doing just famously…we couldn’t be prouder of our little man!

May the snow flurries melt before they hit your driveway!

Jill

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Update from Jay…Jill’s Been Discharged and Gavy May Go Home Very Soon!!!

Jill was discharged from the hospital on Wednesday (1/10) and will now be continuing her recovery from a nearby hotel and then eventually home. She can never be too far away from her kiddos. Lauren is now keeping her spirits up by skipping, jumping, and making beautiful projects. Lauren has been a trooper and has not wanted to be too far away from the family. She’s been staying at a nearby hotel with her Grandma and Grandpa for the past week. She has visited the hospital everyday and has done very well between the hospital world and the hotel. The hotel has a pool so she loves that.

It has taken a team of specialized doctors, lots of favors, donations, prayers, and support to raise our family, and we appreciate all the messages, prayers, support and willingness to help just to get to transplant. It means a lot to Jill and me to have such a great support system and to know that literally hundreds of people are a phone call away to help.

Gavin’s kidney is still working great, and the doctors continue to watch closely to see his body adjust to his new kidney. I have heard rumblings of discharge from the hospital staff, and I’ve even spoke to one of the discharge administrative staff. So, Gavin may be out of hospital before or around the weekend.

I have been by Gavin’s side the whole time and got to witness a miracle, which has been incredible. He may even turn into a Daddy’s boy by the time he gets home (but I doubt it).

Now I’m focusing my attention from the process of kidney dialysis to all that is involved in preserving the normal function of his new kidney. This includes knowing the information on all his blood labs and his new medications. The anti rejection medications play a huge part in keeping his new kidney safe.

I’m trying to get everything lined up (insurance, pharmacy, home nutrition, coordinating information from the transplant team, and keeping watch on his blood labs) so when they tell me we can go home – we will be ready (which may not be too far away :).

Thanks again for everything.

Jay Winslow

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More Post-Transplant Pictures of Gavin!!

Here are some great pictures of Gavin taken by Jill and Gavin’s big cousin Julie Schwalbach Elliott. Julie is a registered nurse and flew in from North Carolina to stay with Gavin the day of transplant and for several days of his recovery. Thanks for the pictures Julie, and for being such an angel to our special baby and his family when they needed you most.

If you want to see a larger slideshow of these pictures, you can click on this link.

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Recap and Updates from Jay on Jill and Gavy’s Progress…Gavs is Eating Solid Foods!

It’s now day three post surgery and Gavin remains to be doing remarkably well. His doctor told me “he is not doing anything that they were not expecting him to do.” which is great news.

Here’s a recap of all the events of transplant day and beyond up to this point:

On transplant day (Thursday, January 3rd), Gavin got out of surgery around 1:30pm and stayed sedated (by the doctors) until the following morning. His kidney function was normal by 5:00 p.m. that same day, which was amazing and what I noted in my last update.

The next day (Friday, January 4th), he had his breathing tube removed in the morning. In the afternoon, Gavin headed back to surgery because his central line came out. It was only a 15 minute procedure, but it required sedation. It was unfortunate that he needed additional surgery, but I knew he needed the central line. I was just so happy his kidney function was working normally and that helped me handle the news of additional surgery.

On Saturday, January 5th, Gavin was able to drink. He was still tired but in good spirits. His kidney continued to adjust to what his body needed versus what Jill’s body needed. This includes the amounts of pain medications and other medications which have been adjusted as well.

On Sunday, January 6th (just three days post-transplant), Gavin was given the clearance to eat solid foods. Pre-transplant, he didn’t eat very much solid food at all. We were all excited to see how much (if any) he could eat.

With his brand new kidney, Gavin was able to eat three meals, eat lots of different foods, and spent more than an hour at each meal eating!!! It was and still is incredible.

Gavs is in good spirits and is recovering well. If all goes well, he will probably be out of the PICU in a day or two and out of the hospital in 7 to 10 days.

Jill’s recovery has been slow, but progressing everyday. She was able to visit Gavin and his good news continues to help her recovery process.

Thank you for all your continued prayers and well wishes.

Jay Winslow

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Gavy and Jill Doing Well…New Photos of Gavy!!!

Just received this email from Sally, Jill’s sister and Gavy’s aunt and Godmother, about Jill and Gavy’s progress….

Just wanted to give an update to everyone. Both Jill and Gavin are doing really well! Yesterday was the first time that Jill got to hold Gavin which was amazing! Both are recovering and working on building strength! Gavin even ate some food yesterday, just another great sign!

Thanks to everyone for their continued prayers and well wishes.
Sally

Here are the newest photos of Gavy with his brand new kidney!

[mygal=gavyhospital]

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