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

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

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

Gavin’s Transplant is Still a “Go”…Despite Low Blood Count. Please Pray for Him.

It looks like all of Gav’s labs are somewhat better, his blood count is still low, so they will have to give him a transfusion in the operating room during the transplant.

Transplant is a go at this time. We will be preparing today, as we are at the hospital, and have a million “ologists” to meet with.

Please say a prayer that tomorrow Gavin wakes up and accepts this kidney and for the first time in his life, feels good…

Thanks to all.

Jill

A Winslow Christmas…Preparing for January 3rd Transplant.

Now I know where the script from National Lampoons vacation came from…ahh, Christmas has come and gone and it was beautiful and wonderful and it’s hard to find the kids in the midst of all the new toys that they have gotten. Things have slowed down to a tiresome pace since we moved to the third of January. We are back in lock down mode so we have had a pretty low key Christmas. All Winslows 24-7 has led to some interesting altercations between Lulu and Gavs.

Our last outing was Lauren’s Christmas concert to see her on stage with her little classmates. I think she may have only learned three words to each song, but she loved being up there. And really, is there anything cuter than three rows of Rudolph hats looking back at you?! Santa came after their show, and her eyes got as big as Reese’s peanut butter cups with delight. On our way home, I told her that I couldn’t believe Santa had made such a trip so close to Christmas, and that they must have a great class. She then assured me not to worry, Santa is not so busy, it’s the elves that are working like crazy. Apparently, she has decided that Santa is more in the PR, delivery management sector, which allows his appropriate face time with children immediately prior to his visit. He is in essence “the man” in a big red suit. Her favorite gift was her number one request, her harp (like every other four yr old out there, she too had a harp on her list—-who asks for that, only Lulu!)

We have put Gav on a rigorous exercise program prior to transplant. He is into sit ups (rotate arms on back of head back and forth and move Buddha belly side to side) and Hi-ya kicks…it’s all so very official. We are thinking of putting a sweat band on him and making a toddler exercise video…look out Baby Einstein. His hair is actually beginning to become too long for his mohawk which has put me at a crossroads. I do enjoy his mohawk (probably more than I should) but I would hate to cut his hair…which puts him at where he is now, a bad baby comb over…but I think that we are going to bear through it and let it grow out (Jay does not agree with this) and see if he gets his curls like his sister…I figure if I let him have a mohawk now, and then long hair, he can do little to shock me in the future (I’m going to regret that)…

Jay and I are recovering from the 46 sugar cookies that we ate over Christmas (and when I say 46 I really mean 117.75) and are just trying to make it through each day…we did take Gavin in today and his labs have been the worst that his have ever been. We have made the appropriate changes, and hopefully we will see the results that we need on Jan 2nd to proceed with his transplant. They do believe that it is possible to get everything in place, just more dialysis and shots and food changes…but on the upside, his liver enzymes were good, so we just need to boost his hemoglobin quick, especially to avoid a transfusion which will complicate things. Well, I better get to my gift from Santa this year, five empty photo albums for about three years of photos backed up onto Shutterfly, that I still have yet to order… the curse of the digital camera…

Jill

Merry Christmas…Gavy’s New Transplant Date is January 3, 2008!!!

So we have been playing roulette with Gav’s transplant dates… We went from Dec 28th, to Jan 17th, to Jan 31st to Feb 21 and now, we are finally set on January 3, 2008. We had to make some more adjustments, apparently there was a misunderstanding, and we will still be doing an open nephrectomy so we were juggling surgeons schedules (imagine trying to coordinate two operating rooms, three surgeons and two specialists).

I have been having some anxiety with transplant since now I have seen my organs in 3D (which all the medical people think is so cool, but is freaky when you see your organs rotating on screen, “as if they cut me and I was looking up through my feet”) and they told me that I most likely will be losing a rib on my right side (very Hollywood). More anxiety piled on top of that when they showed me that Gav will have an incision all the way vertically down his chest – so there’s been some sleepless nights.

I can’t believe that we have to do all of this to make him healthy. It just seems so bizarre because when I see him, I don’t think of how sick he really is. I see this little bubbly, cuddly, happy baby. I feel like everyone must be crazy (but as usual, everyone is sane, I’m just crazy). It was the first time that I ever started crying in a doctor’s office since he was in the NICU, when all the transplant information came at me like someone was throwing tomatoes at me. It just has to happen this time, I just can’t take another bump, I just want him to feel good, if we have to do this, then let’s do it!

Gav has been trying so hard to stand. He has gotten himself into a pike position but can’t quite balance that belly to stand up independently (he can stand by pushing off of objects or people). I love that he is in the stage where any kind of “Boo Boo” can be fixed with Mama’s kiss. He would crawl through the whole room for a kiss on his “Boo Boo” and then instantly, he is okay. That and Beyonce’ he loves that perfume commercial (but who doesn’t love a little Beyonce’ in their lives?) He is obsessed with helping me with the laundry and is fascinated when he sees the water pour in, one of these days he might tip himself right in there. He currently has a sinus infection and may have renal rickets (a bone disease that should remedy itself post transplant) and has been complaining about wrist pain. Every time that he sees Santa he says “Ho, Ho”. (I’ve tried to get him to the ho, ho, ho – but he won’t do the third, perfectionism I know on my part, but it’s just not the same without the third). Christmas has brought back the word “mine” to his vocab and he has to make sure that Lauren knows what is his…it’s great because he has an awesome new pouty face that I like to watch when he has to share.

Lauren on the other hand is having some restless nights “because I can’t get Christmas out of my head” (insert two hands on head and her trying to shake it out). We went to get her hair cut before transplant because Jay can manage a pony tail, but that’s where it ends so we wanted to make it simple for everyone. It was her first haircut ever and the hairdresser treated her like a princess (now we have many requests for a little pamperin’ at the salon). Most mom’s have first hair cut bags with little wisps, I have a baggie with like a five inch strand of curly hair.

She has been wonderful through Gav’s vomiting (it’s been heavy and frequent again unfortunately), one night when he started at 2:30 a.m. she stood straight up in bed (of course she had snuck in by us), threw her hands out and told Jay and I not to worry, “I’m a professional” and went to go get us towels and help out. I can tell that she is getting hip to all this medical stuff now. She needs things “stat” and any question that Jay and I can’t answer she tells us “to call the Dr. on call”.

Thank you all for all of your prayers, we will need them once again on the 3rd. We feel so blessed to have yet another Christmas all together and know how lucky we are. Thank you for your support, 2008 is going to be yet another miracle for our family, may you find yours as well!

Happy Holiday hugs from the Winslows

Lauren and Gavin’s Favorite Things

So I asked the kids what there favorite things were and this is what Lauren came up with (she also took the liberty to add in for Gavin).

“2007 My Favorite things” (Mini-Winslow style)

School buses without seatbelts and wet noses on puppies
Bright colored markers and warm bubbly tubbies
Rainbow paper packages tied up with bows
These are a few of my favorite things

Grammy’s brown pony and hard boiled eggs
Baseballs and footballs and butter with noodles
Sleds that fly with the moon on their rings
These are a few of my favorite things

Girls in posh dresses with fancy fuzzy sashes
Snowflakes I catch on my tongue and eyelashes
Snowy white snowmen that melt in Spring
These are a few of my favorite things

When the marker dries up
When it’s too cold for recess
When I’m feeling yucky bo bucky
I simply remember my favorite things
And then I don’t feel so bad

Jill

Tentative date for surgery – December 28th!

To unpack or stay packed, that is our question. We have the liver enzymes on the way down (yeah!) and a new tentative date of December 28th! Three times is a charm we suspect, and now we are not doing anything that we originally thought we were doing – thanks to some new research. We are doing ultra-low dose steroids and I am having my kidney removed laprascopically, which will make the healing process so much easier!

Things here have been crazy busy per always and time is flying by faster than these nasty Wisconsin winter winds! I have once again not been able to get a successful Holiday shot of my two little ones, I am now deeming every photo Christmas card that I see with two or more kids a Christmas miracle…Ours usually start out all calm and lets make it fun (ho, ho, ho) and then it slowly leads to the idle threats of “look at the camera — for the love of ”…needless to say the later does not ensue many hot chocolate faced smiles…and we will once again, not be doing Christmas cards this year since the date is so close to Christmas, but have high hopes for next year (I promise).

Gav is officially such a little boy. I know this because he is now into trucks, which is so funny to watch him play with, I like it when he thinks that he can sit on the dump truck part and the wheels squeal out from under him and he ends up shocked sitting on his bottom scolding the “naught naughty” truck, with the finger wag and all. He has developed just enough energy to be a little sassy and now does everything and anything to stay up just a few minutes longer before bedtime…from grabbing your face to make you look him in the eye to starting up his new favorite fake laugh (which of course if irresistible to not laugh at) and reverse psychology is working wonders on his eating. “Don’t eat mommy’s yogurt”-gulp! Boy, definitely a boy.

Lulu on the other hand is a straight up posh girl…thanks to my cousin Julie’s visit and the purchase of her first Fancy Nancy book, she has taken on a new persona…she is now “The Lovely Lulu”(but of course she is not 100% on this new nickname, she said its fine for now but I should work on it). In the morning after the tubby I hear requests for “posh” outfits…everything is posh, ‘the fancy word for fancy’. However its hard to take her new founded attempts at sophistication seriously since she has a severe stuffy nose…does anyone know how to teach a four year old how to blow out…Its like this terrible torment for me, I can’t seem to get her to blow out, its always in, no dragon breaths out or feel the air on your finger underneath, nothing is working…seems so simple, but apparently nose blowing is an art.

The cold does not deter her or Gav from their new favorite activity, singing and dancing and giving a concert while standing on top of the laundry basket, laundry baskets provide hours of fun at our household. They put on the best show I’ve seen in years…but then again Jay and I don’t get out to much (: Lauren is obsessed with coloring and now has perfected her triangle reindeer (just for one of the million letters that we have sent to Santa this year) and the family picture, where she even gives Gavin his mohawk (because he is “Bad to the Bone”.) Maybe I should turn that into a Christmas card, hmm its a thought…

Anyway, I will leave you with my bedtime conversation with Lauren…

Lauren:”I know where I came from (very hoighty toighty with arms crossed and eyebrows raised)—-a stork made me”

Me: “No baby, God made you”

Lauren: “But how, (see brain working here) he doesn’t have any tools up there”

Me: “With his own two hands”

Lauren: (ponders for a bit) “I know he must draw them and cut them out and then has the stork drop them off”

Me:(thankful that puts off any uncomfortable questions) “Interesting theory”

Transplant Has Just Been Canceled…Gav’s Liver Enzymes Are Elevated.

Transplant has been canceled. Gavin’s liver enzymes are elevated. They believe it is a reaction to the antibiotic Augmentin but need to watch the numbers go down before they can transplant into it.

We are devastated right now, but know that everything happens for a reason. They are anticipating a January transplant date if his liver starts to improve over the weeks. It looks like Gav will be having a kidney less Christmas…we will get there, I guess today was not his day.

Jill

We’re Ready…This Is Gavin’s Moment…May God and the Angels Watch Over Him.

We are stronger having this army of people behind us. Thank you for all your kind, encouraging loving words, you have no idea what they have done to comfort us along the way, it has been a roller coaster.

We are strong, Gavin is strong right now. He is eating, he is not vomiting and he is ready. We are going into this embracing his new life and will face whatever comes as it comes with God at our side…This is his moment, may all the angels be watching over him as we prepare to see his medical team aid in God’s miracles!

May you all be blessed and have a very Merry Christmas!

All our love,
The Winslows