Author: Vinny

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Emslie Pumpkin Farm Collecting Donations

Waukesha, WI – The family-fun Emslie Pumpkin Farm will be collecting donations, throughout October, in honor of Gavin Winslow, the sweet, seven-month-old baby in need of multiple kidney transplants.

Emslie Farm realizes that kidney transplants are expensive, around $200,000 each! They are aware that the first year of follow up for Gavin will cost about $40,000, without including any hospital stays he may have during his first year. Moreover, they know that Gavin will need to be monitored for the rest of his life. They understand that the medications needed to keep Gavin’s new kidney functioning, costs on average, $2,000 per month, and that this cost will incur for his family as long as his kidney continues to function. Since the average kidney transplant lasts only 15-20 years they recognize, that at some point, Gavin will need another transplant.

Because of all these expenses, Emslie Farm, along with Gavin’s family and friends, has joined with the Children’s Organ Transplant Association to raise $100,000.

The Children’s Transplant Association (COTA) is a national, nonprofit 501© 3 charity dedicated to helping families raise funds for transplant-related expenses. Over the past 20 years they have helped more than 1,000 families, in 49 states, in all regions of the United States, raise millions of dollars for their transplant-related expenses. Contributions to COTA, on behalf of Gavin Winslow, are 100% tax-deductible.

In addition to helping Gavin, Emslie’s Farm features hayrides, a corn maze and a small petting zoo. Pumpkins, corn stalks, straw bales, gourds, squash, and many other decorative and delicious Fall Harvest delights will also be for sale. To boot, Mr. Wil Emslie is sawing away to have his haunted barn ready for a touch of Halloween chills and thrills by next weekend.

Emslie’s Farm is located at S1W26417 Northview Road, Waukesha, WI. Please call 262.617.4032 for specific times and dates of all activities. Groups are invited to call as well.

For more information about Emslie’s Farm, or other fundraising and volunteer opportunities, please contact Jane Schwalbach, 262.549-6129 or janeschwalbach@yahoo.com

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Growth hormone approved!

(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

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Insurance rejects Gavin’s growth hormone shots

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

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Bladder surgery set for November 15th..please pray

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

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Crazy week…”It’s only in the darkness that you can see the stars”

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!

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Thanks…Upcoming Fundraisers

Thanks to everyone who is helping raise funds for Gavin, we are so appreciate there are no words that can really express how much it means to us. We look forward to Gavin getting the best of the best in medical care and not having to worry during his lifetime of the financial aspects of his care, just his health! Here are some upcoming fundraisers:

October 1- Lake Mills, WI in Commons Park 9am-3pm, Fall Festival, candy sale, pumpkin bowling, face painting and tattoos. Chairperson, Abby Hale. Should be a lot of fun come on out and join us!

October 5,6-Dualing Brat Roast, Chilton, WI chairperson, Nancy Mueller and Mary Jude Salm

October 23, 24- Milwaukee, WI, Marquette University, Bake Sale. Chairperson, Theressa, volunteers may be needed to help sell baked goods

November 18,19 (7a.m-6 pm)- Cabaret—Showcase of talents, looking for singers, artists,poets, photographers and pianists, the sky is the limit at Latte Cafe, 13780 W. Greenfield Ave Brookfield, WI 53005. If Interested in performing, contact Jodi or Ceil at (262) 789-JAVA.

Also, next to the Latte Cafe there is a hair salon, Hair On(they are excellent!), they will donate $5 from every client service provided on Saturday November 18. Call today to schedule your apt at (262)784-0922. Chair people, Jodi Curtis and Ceil Schwalbach

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Possible growth hormone injections…Finding the right answers in the grey area

Hi everyone! Well, Gavy is up to 14 lbs which is a bit alarming and has hit a stand still on his growth(they’re talking growth hormone, daily injection-ugh, I hate needles!). He’s fallen off the growth chart, which for lack of better words, sucks. We have had a lot of stuff going on lately and it all seems so overwhelming. We met with UW Health in Madison because they are in the top 20% in the nation for transplant and have one of the best surgeons in the nation there, and they suggest putting a feeding tube in. I know its vain, but right now without the external signs, its easy to convince myself that he is fine. Even the dialysis and medicine seem normal now, but the feeding tube reminds me of the dark days in the NICU when we didn’t know if he would survive. Which, I guess we still don’t really know for sure, but its a lot easier to pretend normal right now. Its a short term solution to get us to our ultimate goal, since dialysis isn’t making him better, its just sustaining him, we need to weigh all the options, and do whats best for him. This has been even more difficult since Children’s dr’s are giving a different opinion. I just wish the there were right answers, or promises. You do this and you get this…its just hard trying to figure out whats best when there is so much grey area.

Anyway, enough with the medical stuff…since Gavs is a little top heavy with little legs, he still isn’t bearing a whole lot of weight on them now, but he can finally touch the exersaucer floor (we call the exersaucer his “office”) so hes in there when I’m pumping (or pumparamadingadong like Lauren likes to call it) and is diggin the mirror action (who wouldn’t if you were that cute) He is doing well with his head holding and is working hard on rolling, but has a hard time thanks to his stoma diaper. He is liking sitting down and is just starting to tripod a little but is a little wobbly still.

Thats about it for now, I’m sorry this isn’t updated that often, but its hard to find time, but please sign his guest book, its nice to see who visits my son, who thinks of them, I know that we don’t get out much to see our friends and family, but we think of you often, and its comforting to read the notes to him. Plus, we can print this out give it to him when he gets bigger. Stranger or friend, all words, all the support, means the world! Hopes this finds you well! G’night, Jill

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“You Are My Sunshine”…Gavy’s 6 month appointment

Tonight is one of those nights, where I think I am just over tired. Both Lauren and Gavin got sick this week and now Jay, I think I may be too, but I haven’t had time to notice. As I rocked Gavin tonight I just kept singing “You are my sunshine” I used to sing it to him all the time in the hospital, because it was true, especially that second verse: you’ll never know dear how much I love you, please don’t take my sunshine away, the other night dear when I was sleeping I dreamt I held you in my arms, when I woke dear I was mistaken, so I hung my head and I cried…why do they make lullabies like that?! We’ve also are having some major issues with his machine, as it alarms every hour, that scene in office space where they all go after the fax machine, I can’t say that hasn’t crossed my mind at 2 a.m., and 3 am and 4 am—although I do remember a time in my life when those hours didn’t seem so crazy!

Gavin had his 6 month apt, 13 lbs 14 oz, 24 inches long… a little short and light, but hey, nobody after said Jay or I were giants! Lauren and him had a giggle fit tonight, I really believe that little kids understand each other, its so very cute! Lauren is all Ms. I can do it myself now (except sleeping, that we definitely can’t do!) because she is the big three year old as of the 26th!

We had a wonderful kick off idea campaign this weekend thanks to all those who attended again, Gavin will be thanking you over and over again as he grows!

Gavin saw his first Packer’s game tonight…we had to tell him about Farve’s earlier years… Hope this finds you well, I was surprised when we saw over 600 people visited the site, it just reminds me how lucky we are to have so many people thinking of Gavin, every kind thought helps! It also reminds me how important it is to become a donor—there is no greater gift or way to live on!

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Laughter is the best medicine…Write your congressman

Gavin is adorable, but thats not anything new, he was laughing BIG TIME at Lauren tonight and that was so fun to see(at Lauren’s new joke, “what’s Beethoven’s fav fruit?….Bannannanaaaa”)Thanks Abby for that one. Sometimes I wonder how he is so loving after everything that he has gone through. I think it is just a reminder to always carry the good with you and discard the bad—and that laughter is really good medicine. I can’t wait to see the boy and man he becomes. I’m going to bed, the kids won today, I think I am the most tired! Remember when 9 pm seemed early?!

CALL TO ACTION

There are two bills that you should write to your congressman about(find your representative and email at www.congress.org ), its listed by states:

Medicare Fairness for Organ Transplant Recipients, Act of 2005 and the Immunosuppressive drug coverage for transplant patients Act of 2005… send an email to your congress rep, asking them to support these bills—in supporting these bills they will be supporting life…this is a quickie that if you don’t have time to write your own, you can cut and paste:

I am writing regarding the Medicare Fairness for Organ Transplant Recipients Act of 2005 and the Immunosuppressive drug coverage for transplant patients Act of 2005. I urge you to support these bills.

As someone who has witnessed the expenses of financing the cost of their sons necessary medical expenses, it would create a huge relief from yet another financial burden. Not covering the medications after transplant is like giving someone a car and not the keys; you’re left with one that will not function without the other.

I would like to hear a response regarding this issue and urge you to get fellow supporters to help get this bill passed—support life.

This bill will not just aide Gavin, but all organ recipients in their struggle, it would give medicare the ability to supply the drugs needed in order to make a tranplant last! Thanks! Love, Jill