Jill's Journal

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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

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A bit of a scare…

Well, today we had a bit of a scare, we thought that his hydrocele had become incarcerated, which it had, but then it alleviated itself without any intervention. It was scary driving to Children’s, Lauren told me I was driving like the wind(which I may or may not have been, I will not incriminate myself). Gavy is up tp 13 lbs and is doing great. He had his 4 month apt and the dr said that developmentally he is right where he should be. On the physical side he is becoming a champ with head holding (he could def participate in a head holding contest but no arm wrestling) and is digging looking around at all the new stuff he can see. I am happy to say that I am still his favorite attraction, and hope that he will continue to be a mama’s boy (I’m going to ruin him for the ladies) and maybe this one will say mama before dada like Lulu (: He is so funny, he just is totally talkative and loves holding conversations and looking at books. He still believes that tummy time is for the birds despite all of our efforts to convince him otherwise (much to his therapists shagrin). We feel so lucky to have our family and everybody who is praying for him, the prayers are working. I hope that you all are enjoying each and every day…I’ll end with the irish blessing, which I seem to be thinking of frequently…may god bless you and all your family, wherever you may go! Hugs, Jill, Jay, Lauren and Gavin