The less I post, the better things are. That means Zoe is healthy and busy.
We had a minor issue with the cold from hell earlier this year (part of last year too actually). Poor Zo got a cold right after Christmas which turned into a sinus infection. I do have to thank her for sharing that particular set of germs with me. The family that blows their noses together, stays together…. Some antibiotics helped move that along and she was better until a week before her annual biopsy was scheduled when her brother (the kids who NEVER gets sick) came home with a cold. He was sniffly for about a week…..Zoe just recently stopped coughing. Her biopsy got rescheduled since she was coughing and wheezy. That was a small matter of contention for me since I called transplant 2 days before and left a voice mail about her condition to see if we needed to reschedule. I got no response so we showed up at the hospital bright and early that Friday morning only to be sent home when anesthesia heard her cough. We rescheduled for late February and she was referred to pulmonary for a consult 2 weeks prior. The pulmonologist is leaning towards asthma mostly because it takes her about 4 weeks to kick a cold. Apparently that’s 2 weeks longer than it should take, even with her immune system suppressed. He gave her a week of steroids and a non-steroid inhaler to be used twice a day every day until we see him again. He also wants to her to get sick a couple of times before we see him again. (?!) That’s right. He WANTS her to get sick. If the use of the inhaler shortens the duration of her colds or keeps them from moving into her chest then he will feel confident saying yes, she has asthma. She’s gotten sick once so far. The sinus congestion came on fast and furious. She couldn’t sleep unless she was sitting up or she coughed all night long. This prompted a trip to the ER (her pediatrician’s office was far too busy to see Zoe – yes, she will be getting a new doctor) where she was given a Z-Pak and cough medicine with codeine. Within 2 weeks it was gone and she was no longer coughing. Was that the work of the antibiotics? The cough medicine? The inhaler? Who knows. She was better faster and that’s all I care about at this point. The poor girl coughed for 4 months straight. I’ll take 2 weeks.
Her biopsy went off without a hitch in February. She was still coughing a little, but not enough to warrant another reschedule. Her results were 1a and 0. Not perfect double 0′s like last time, but that’s close to perfect and we’ll take it. I’m also pleased to announce that Zoe has no more liquid medication. She’s been taking pills for a few years now, but her 3 time a week antibiotic remained liquid because the pills are larger. I talked her into trying them and she swallows them without issue. Hooray!
This school year has been a busy one for Zoe. Of course she still dances; tap, ballet, jazz, and she’s involved in the opener for recital again. Next year she begins pointe in addition to her regular ballet class. She’s gotten involved in student council and recently signed up for a drama club that meets after school. She also had the opportunity to try out for cheer leading. Naturally she made the team. While gymnastics isn’t her strongest suit (that’s one thing she’s never taken lessons for), she’s been dancing since she was 5 so I had no doubt about her ability to cheer. She also wants to sign-up to volunteer as an instructor at Safety Town this summer with the exception of the week she’s at camp.
We’ve also begun preliminary discussions with Make-A-Wish. This is a process that could take years so I imagine I’ll have more on this as time goes on.
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Due to illness I missed my customary Heartiversary post. In lieu of that I’ve decided to post something I wrote for another site.
During my internet travels I came across these spiffy little bracelets called Bravelets. I’ve been eyeballing them for awhile ad finally broke down and bought 2. The premise behind these bravelets is pretty simple. They all say “Be Brave” on them, but they come in a multitude of different colors for different causes. Mine are lime green for organ donation. $10 from the purchase of each bravelet is donated to your cause.
After receiving and falling in love with mine, I decided to tell our story for their site. Most people here are familiar with Zoe’s story. Occasionally, someone new stumbles in and they go in search of who we are and we’re about. So, here is an updated version of Zoe’s story to mark the 6th anniversary of our miracle:
This isn’t really my story. It’s my daughter’s story, but I know it even better than she does.
My Zoe was born completely healthy. At some point she came in contact with a common virus and suffered congestive heart failure for the first time at 6 weeks. We were blessed and we didn’t lose her. She made what appeared to me a full recovery. We were told that the left side of her heart would always be slightly enlarged as a result of the damage done by the virus. At the age of 1 she was taken off all of her medications. We continued to see the cardiologist every year. At age 5, we were told that if she still looked this good the following year, she would be released from his care. She started taking dance lessons and playing soccer.
She started to get sick just before starting kindergarten. She would be very ill for a day and then completely healthy the next. After 4 months and many incorrect diagnoses from the pediatrician, we learned she was in congestive heart failure again. Apparently her recovery wasn’t as full as we thought. She went back into the regular care of the cardiologist and she was put back on all of her medications. After 9 months, the cardiologist wasn’t pleased with how she was recovering. The left side of her heart wasn’t shrinking like it did the first time and she was very tired all the time. He referred us to a friend & colleague of his who happened to a transplant doctor. He wanted us to consult with him just to see if there was anything he could do for Zoe. We met the transplant doctor for the first time in August 2008. In September, we were told that she was getting steadily worse instead of better and medicine wasn’t going to help her anymore. She would need a heart transplant and it would have to happen before Christmas is she was going to survive the year. I kept my game face on for Zoe’s benefit, but I felt like someone had just punched me in the stomach. I felt like I couldn’t breathe.
Zoe got steadily worse from that point. She was hospitalized on November 1, 2008. On November 5, 2008 she was intubated. I had explained the procedure the best I could to a 6 year old. Just before they put her under, she asked me if she was going to wake back up. I told her, of course she would. I walked out of the O.R. worried that my last words to my daughter may have been a lie. The drugs they were using to keep her alive got her the top spot on the National Transplant list. For three more weeks I watched my daughter struggle. We were beginning to discuss mechanical means of keeping her alive if a heart didn’t become available soon.
On December 1, 2008 we were told that we had a good prospective heart. They were running the preliminary tests and if it looked good they would send the team after it. Zoe was taken into the O.R. at 11pm that night. A little after 5am on December 2, 2008, my family & I watched the flight team bring Zoe’s new heart off the elevator. Zoe had a few minor issues post-transplant, but we just celebrated her 6th Heartiversarry.
At first glance, my Zoe appears to be a normal 12 year old girl. You would never guess that she’s gone through what she has. She dances, plays the cello, and even joined student council this year. She loves nail polish, purses, shoes, and boy bands. She’s not afraid to show off her scar or tell you her story. She tries to raise awareness for organ donation wherever she goes and she’s the bravest girl I know.
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This was team Zoe’s Heart’s 5th year at the GOLWR. To date, we’ve raised $945 for LifeBanc. Our team was small this year and a few registered members didn’t show up on event day so we opted to skip the team picture this year. I did take a couple of photos before and during the Legacy of Life opening ceremony.
Donations can be still be made to the team through September 30th. Please go here to donate: http://lifebanc2014golwr.kintera.org/faf/search/searchTeamPart.asp?ievent=1100513&lis=1&kntae1100513=9D9CC410E10A437BB36816CB013C2B20&team=5977230&tlteam=0
I’d like to thank our team members for their donation and participation: The kids (Gabe, Zoe & Anna), Dawn & Joe Woodings (A.K.A Nana & Grandpa Joe), Mark & Sherry Snider (A.K.A Pappa & Grandma Sherry) & Mike Tanner.
I’d also like to thank our contributors: The Strongsville Optimist Club, Lindsey Gorning, Mike Tanner, Richard Cluck, Karin Rothig, Barb Hallenburg, Matt Wooster, Amy Gomes, Justin Snider, Nicole Snider.
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I received an email a couple days ago from a mom who was at the Cleveland Clinic waiting for her daughter, Hope’s, new perfect heart to arrive. The girls share a doctor and Hope’s mom stumbled upon my little blog by accident. She planned to pick her way through it during surgery & recovery. Hope was born with a congenital defect and had 2 surgeries before she was 6 months old.
I emailed this mom yesterday morning to see how Hope’s surgery went. While I waited for a reply I decided to see if I could find her on facebook. I found her, and was saddened to learn that Hope isn’t doing well. From what I’ve read, there’s been some bleeding, high blood pressure, swelling, seizure activity, and now her kidneys aren’t functioning well. Hope is currently on ECMO (life support) while Dr. B and the surgeons try to get Hope’s issues under control.
When I told Zoe about the email I received she asked if we could go meet her. Due to Hope’s setbacks, the visit will have to get put on hold for awhile. I did tell Zoe that Hope isn’t doing well right now. Having lost Aly & Mel, Zoe’s worried for Hope, but she knows that she’s in the best possible hands right now.
I’m not a praying woman, but Hope and her family are in my thoughts today. I’m crossing my fingers for her. Zoe has done what Zoe does best, she’s made a little something that I’m going to share here.
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I’ve got the team page for the Gift of Life Walk & Run all set up. I set the fundraising goal at $1,500 again because we fell a little short last year. If you join the team or want your donation to count towards the teams fundraising goal, please make sure you join or donate from the teams page! You can use the link here or search for the team on the GOLWR page on LifeBanc’s website.
The event is Saturday, August 9 at Blossom Music Center.
I’ve decided to try a booster campaign to sell t-shirts to help us with our fundraising goal.
I’ve set the booster campaign to end well before the event so that anyone who wants to buy a shirt AND join the team isn’t spending all that money at once. The t-shirts are $20. Adult registration for the event is $25 and registration for 13 & under is $15. If you are a team member and buy a shirt, this will be our team shirt on the day of the event. If you join the team, don’t buy a shirt, and have your old team shirt; please wear it to the event. If you join the team, don’t buy a shirt, and don’t have an old team shirt; that’s ok too. It would be awesome if you could buy and wear a plain white, pink, light green, or light blue shirt so we all look like we belong together!
I’ll post more details as we get closer. If you have any questions please don’t hesitate to email me.
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This past Saturday night, Zoe and I had the pleasure of attending a benefit for a fellow heart transplant recipient. Debbie Dalehite, who received her new heart last summer, graduated high school with my father. My dad’s class recently had their reunion, and while Debbie was not in attendance, she was running the show from her hospital bed. My dad learned about the benefit for Debbie’s medical expenses at the reunion and he thought Zoe and I would like to go and meet a fellow heart recipient. Zoe loves to meet people like her and we met not one, but 2 heart recipients that night.
We were introduced to a gentleman name Robby (I’m terrible with names so I hope I got that right) and his wife. Robby received his heart January 2009, one month after Zoe. He was in the hospital waiting at the same time as Zoe and he remembers following her recovery very closely. He told her, “I’ve known you since before you knew I knew you.” Zoe loved that. Robby and his wife also form a team for the LifeBanc Gift of Life Walk/Run. Perhaps some of my team will remember seeing this name, The Rowdy Hearts. The Rowdy Hearts raised $6,142.00 last year and had a team of 82 members. They were familiar with our little team and suggested we combine our teams for 2014! Robby suggested Zoe’s Rowdy Hearts as the new team name and we love it! They have a company sponsor that does their shirts and even threw in hats last year. We’ll get together as the even gets closer to work on a new team design. We’re hoping to be the biggest team there in 2014!
While at this benefit, Zoe took a walk around to check out the silent auction items up for bid. She’s a huge Vera Bradley fan and they had a back pack that they were auctioning off. I bought 20 tickets and gave Zoe half which she promptly dumped all of into the Vera Bradley bag. Debbie’s family, who was running the benefit, found out about Zoe and her desperate desire to procure this bag and they gave it to her. Oh, yes. JUST GAVE HER THE BACKPACK! I don’t think you can image how elated this little girl was to get this bag. She just sat at the table and hugged it. I’d like to give another special thanks to Debbie and her wonderful family for making this fellow heart girl so happy.
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I’m sure everyone is wondering what the heck happened. Here I am posting a cry for help prior to the LifeBanc event & then BAM! Nothin! I do have an explanation, albeit not a great one, but it is an explanation just the same.
It really boils down to a collection of issues.
First, I hate sitting at my computer at home. My den is not as well lit as I’d like and the keyboard is in an awkward position making it a challenge to type anything. Not to mention that my mouse hates my desk and refuses to register half the time. Where is my mouse pad? Excellent question and as soon as I figure that out I’ll let you know.
Second, getting on my computer at home is not an easy task. There are two little girls in my house who spend hours at a time on it, stalking the people at Radio Disney.
Third, I decided last fall that I desperately needed a career change. Every time I got on my computer that time was spent updating my resume, scouring job listings and emailing people about possible jobs. I’m happy to announce that at the end of December I did manage to find another job. All my months of hard work ended up being completely pointless because I took a promotion at my current company.
Fourth, I didn’t realize it until recently but my browser was out of date. Every time I did finally get here to update, I’d get it all typed out but when I hit post, it disappeared!!!!! This, coupled with the first issue, caused me to become angry and need to walk away before causing my computer to have a nasty accident. About a month ago, my sister said she was going to do some needed site updates & I thought Eureka! this will fix the problem. Nope. Apparently all this trouble was due to an out of date browser. I’ve upgraded to Google Chrome & it’s been smooth sailing. Stupid technology.
So please forgive me. I’ll try to do much better from here on out. I promise. To sweeten the pot, I’m including some pictures in this update. Hopefully you’ll all be so blown away by the beautiful young woman Zoe is growing into that you’ll forgive the transgressions of her overworked and underpaid mother.
Gift of Life Walk/Run Results:
This year was not our largest team as I had hoped. Due to work schedules, prior engagements, injuries, etc… we lost quite a few of our team members. According my calculations, we came in just $115 shy of our fundraising goal. We raised $1,185 for LifeBanc. Not too shabby for our little group. I’d like to extend a huge thank you to Tom Breno and the Strongsville Optimists Club. They have given us our largest single donation for the past 3 years. We couldn’t do it without you fantastic ladies & gentlemen. Maybe some of you will consider joining the team in 2014 & participating in the event with us. Zoe’s Heart would love to have you! Just so everyone else knows, I plan to set the fundraising goal at $1,500 for 2014. You’ve got 8 months to do what you need to do to make sure you can join the team or make a donation. This will be our 5th year at the event so let’s make THIS our biggest year yet! WooHoo!
This was a milestone heartiversary for us. Zoe has reached 5 years post-transplant. This means that she will be on an annual biopsy schedule instead of the bi-annual schedule she’s been at. This also means that she will have her regular check-ups with Dr. B. every 6 months as opposed to every 3. This is a huge thing for Zoe and to honor her last 5 years, I ran 5 miles for her that day. She asked if I plan to do that every year (1 mile for every year on every heartiversary). I do plan to make this a regular practice. What am I going to on her 20th heartiversary she asked me….. I laughed and told her that I’m going to try for 20 miles and hope I make it. We still haven’t heard from the donor family. Every year I think of their anniversary while we celebrate ours. I’m in the process of writing them another letter. I’m hoping that this is the year that they’re ready for us. I’d love to show them what their sacrifice has given the world. Thiers died and because of this mine lived. I truly believe that our children are meant to do great things together.
Biopsy/Dr visit updates
Zoe saw Dr. B. back in September for her check-up. Things looked good as always. Poor thing battles canker cores on a regular basis because of her immune system. She had especially nasty one (3 in one spot actually) during this visit so I.D. took a look at her and thankfully it’s not herpes virus related, just your average run of the mill canker sore. Had it been herpes we could have put her on maintanance drugs to control outbreaks. I did some research though and changing to toothpaste without Sodium Laurel Sulfate has been shown to help. Finding toothpaste without SLS was nearly impossible, but I found one and that with some special mouthwash specifically to fight and control canker sores has helped immensely. Her next biopsy is scheduled for January 31st.
Zoe chopped all her hair off. It’s super short. She wanted to copy the style of a girl at dance, but honestly, it was ugly so she & I agreed on a style and it turned out cute. I do miss braiding her hair, but I don’t miss arguing about brushing it.
She’s got a birthday coming up. The big 1-2. She says she wants a quiet party at home. Ha! This kid doesn’t do anything nice and quiet. The bigger the better and she can’t get enough flash & bang. I suppose we’ll find a middle ground like we always do. All I know is that there’s a house full of screaming tween girls in my future. I can feel the headache already.
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The Gift of Life Walk/Run is just over a week away! So far it looks like I’m missing more than half my team! :0
Online registration ends Monday July 29th @ 5pm. I will be picking up the (registered members) team packets from LifeBanc on Wednesday. Since these contain race bibbs for the runners, I will do my very best to get them all delivered by Friday night.
If you plan to register online or at the event, please make sure you do it under Zoe’s Heart or the team will not receive credit. If you plan to register at the event & would like to have your registration filled out ahead of time, please let me know! I can print registration forms and deliver them when I’m out delivering packets.
Since I didn’t get much of a response (any actually) on new team shirts, we will be using our shirts from the past 2 years. If you are new to the team, your shirt is missing, or your shirt no longer fits, I have a favor to ask of you. I’d like for you to please purchase a t-shirt in either light pink or light blue to wear to the event. If you’re running, please bring your shirt with you to wear for the team picture. You don’t need to run in it. I probably won’t unless it’s chilly that morning.
I think that’s all my announcements regarding the GOLWR. See you all at Blossom August 3rd!
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It’s that time of year again! LifeBanc’s annual Gift of Life Walk & Run. As always it will take place at Blossom Music Center. The event date is Saturday August, 3, 2013.
I’ve registered to run the 10k already and I’ve got the team page set up. Visit our page, Zoe’s Heart, to join the team or make a donation to help us reach our fundraising goal of $1,300.00.
Two years ago, we got a sponsor to make team shirts for the event. Last year we threw together shirts for new team members. We are not affiliated with the sponsor anymore so some team members have mentioned a desire for new shirts not bearing the sponsors logo. Based on team growth the past few years, I’m anticipating 25 team members this year. T-shirts for 25 people + extras in case we grow larger than I anticipate will be an expensive venture and one that I just simply cannot afford to do. I’ve been thinking about this dilemma for the better part of 2 months now and I’ve come up with 2 possible solutions. Solution 1) Wear plain colored t-shirts, light pink for the girls and light blue for the guys since these are the current colors of Zoe’s site. Each team member will responsible for purchasing their own shirt or you can give me the money and I will pick it up for you. Solution 2) I will start pricing custom shirts. I’ve been told that I should be able to get this done for about $10 per shirt. If this is the case I will be asking team members to chip in for the cost of the shirt.
If you are a past team member and plan on joining again or plan to join the team new this year please do not hesitate to offer your input on the shirt dilemma. I’m open to suggestions and ideas. I know times are tight and I would never ask anyone to shell out money they don’t have to be a part of this team. I’m grateful to every member of the team and our donors for their continued support of this cause that means so much to me and Zoe. You can contact me via my Zoe’s Heart email or on facebook.
I’m hoping to make this team Zoe’s Hearts biggest GOLWR ever! THank you again everyone!
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Zoe had her 6 month biopsy this morning. Her pressures were good and her cardiac output remain unchanged from last biopsy which is good. Her results came back as a 1a and 0 again. She has maintained these near perfect results for every biopsy she has had post transplant. It’s a good sign. According to my calculations, she should have 1 more 6 month biopsy and then she will go in once a year. The 5-year mark is another transplant milestone.
You all may remember this past summer when Zoe and I spent the afternoon with photographers and the folks from Donate Life Ohio shooting pictures for their website, commercials and other educational uses. I got an email this afternoon from LifeBanc informing me that from February-March, throughout Ohio, Zoe will be featured on billboards for organ donation. Here’s what to look for:
Nikki & I were discussing (briefly) updating the site. Zoe’s drawings and her “potatoe people” have served us well. However, our girl is growing up and we think her site should reflect this. She’s at a very delicate point right now, caught directly between being a little girl who loves princesses and a young lady who has all the facts on her favorite boy band. So be prepared for things to change in the near future. Don’t be alarmed. It’ll still be the same site, just in new packaging.
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