Hey Everyone! This year Zoe and I will be participating in the Gift of Life Walk & Run (we will be walking 
) for LifeBanc. LifeBanc is a nonprofit organization from Northeast Ohio that works to heal and save lives through organ and tissue donation.
We’ve started a team for the event: Team Zoe’s Heart (naturally)! Here is the link to the team’s web page: http://lifebanc.donorpages.com/2010GiftofLifeWalkRun/ChristinaSnider
On that site, you can register to walk with us on the day of the event or make a donation to help the team make it’s goal! The event will take place on Saturday, August 14, 2010 at Blossom Music Center from 7:30 a.m – 11:30 a.m.
If you can’t join the team, please consider making a donation. As you all know this is a very worthy cause and an issue that is close to our hearts.
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Zoe’s dance recital was yesterday. The name of the recital was Shop Till You Drop and it was such a great show. All these girls (and a few boys) worked so hard the last few months and their hard work definitely paid off. Everyone did so wonderful. Zoe did wonderful, despite her losing a shoe during her tap routine. I may post the short video I took of her ballet routine here on the site but she made me promise not to put her tap routine anywhere (she’s a little embarrassed about the shoe mishap).
Here are some recital pictures. Thank you so much Elizabeth for doing Zoe’s hair (she won’t hate you forever I promise! haha) and thanks to Maggie for doing Zoe’s make-up! You guys made my muffin look so beautiful!
Me and Zoe in her Ballet costume
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I’ve known for awhile now that zoesheart.com has a stalker, and I don’t mean the kind who hangs out and reads because they genuinely care but never comments. I’m ok with that kind of stalker, but that’s not what we have here. What we have here is someone who doesn’t care about Zoe or her struggles/milestones (we have one coming up but I’ll post separately about that). This person searches the site, and occasionally lurks at sites I’ve linked to here all in a effort to get to me and make my life difficult. They have a battle going on and while Zoe is certainly not a part of that, neither am I in all honesty, they have decided to make her a part of it by trying to use zoesheart.com to further their own agenda. In their twisted reality bringing someones child into a fight is acceptable. Well, I’ve got news for them, it’s not acceptable in mine and I’m going to do everything in my power to stop them.
That said, there are going to be some changes made to zoesheart.com in the near future. Subscribers to the site should be hearing from either Nikki or myself shortly with the changes and what it means to you as a faithful Zoe follower.
I apologize for any inconvience this may cause but I can’t let someone bring Zoe or this site into something they don’t have any business being part of. I appreciate all of your continued support.
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Zoe had her biopsy on May 3rd. Her results were double 0′s again so that’sgood news. Despite the good results our recent trip to the clinic was a comedy of errors and Zoe and I are now accomplished “waiters” (and I don’t mean restaurant type waiters). Zoe wasn’t first on the schedule so we didn’t have to be there until 8am and we arrived right on time. After waiting in the surgical waiting area for 2 hours we found out that the computers in the peds cath lab went down so all the equipment had to be taken to another building to the adult cath lab and they were moving all peds patients there for their procedures. We finally get taken back to pre-op at noon and Zoe was in the cath lab and asleep at 1:45, nearly 6 hours late. Normally we’re home between 4 and 5 on biopsy days but due to the craziness that was the Cleveland Clinic that day we didn’t get home until 7. Her results were perfect and Dr. Boyle is pleased so it makes the waiting we did worth while and Zoe was very well behaved while we waited. I was very proud of her.
During our wait another nurse from the transplant team, Jennifer, came to hangout and do a sleep study for peds heart patients. I answered some questions about Zoe’s sleep habits and Zoe and Jennifer answered some more general questions about Zoe and her health. One of the questions Jennifer asked was “Do you get embarrassed about your scar”, or something to that effect. Zoe’s response was, “Nope. I don’t care if people see my scar.” I’m really proud of that response. Growing up, my sister was embarrassed of hers and I’ve tried really hard since the transplant to make sure Zoe is proud of hers. It’s a symbol of her second chance at life. Not many people get that opportunity and I want her to be proud of it. I think she is. She doesn’t mind showing it off and she doesn’t mind answering questions about it. About a month ago, on our way into dance a little girl coming down the stairs saw her scar and stopped her and asked what it was from. Zoe said, very simply, “Oh, that’s from my heart transplant” and she continued up the stairs. I didn’t want to draw attention to it so I just smiled and followed her up the stairs. I was giving her a nice mental pat-on-the-back though.
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Zoe had her prograff levels checked last week and they’re perfect. I was surprised. I thought they would be low with as much as she’s grown. She needs new school shoes. I was trying to make the 3 pairs she has last since she only has lass than 2 months of school left, but I don’t think that’s gonna happen. She complained that 1 pair is hard to get on so I’m going shoe shopping next week I guess.
After the big dance recital on June 19th she’s going to start playing soccer again for the first time since 2007. She’s pretty excited. I made her wait until the summer session because the games are on saturdays and that conflicts with ballet. I don’t want to pay for soccer and have her miss half the games because she has dance saturday afternoon. So when dance breaks for the summer she gets to play soccer.
She’s scheduled for a biopsy on the 3rd of May. She was supposed to have it done in April but we went out of town then Dr. Boyle went out of town so the first week of May is the best we can do. I’m not concerned though. She’s doing great so I anticipate consistent results.
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Zoe’s friend Melanie passed away this morning. When we met Melanie just after Zoe’s transplant she was a spunky 7 yr old girl with energy to spare. Melanie received her first heart in October, just before Zoe. She then received her second heart over the winter (November I think). Apparently Melanie is a biological rejector meaning she’s biologically unable to sustain donor organs. Because she’s rejected 2 hearts in under 2 1/2 years she was turned down for a third despite Dr. Boyle’s plea to the Cleveland Clinic Transplant board. As of last night (please keep in mind my information is 3rd hand) she was intubated and on constant dialysis because her kidneys had failed. Her family made the decision to keep her comfortable while she passed away. They really didn’t have any other options. My heart goes out to Mel’s mom, Christine, and her family. I can’t imagine having to make that decision for my 8 year old.
I don’t have funeral information yet but I will post it here as soon I get it.
Please keep Mel’s family in your thoughts & prayers.
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Today is Zoe’s 8th birthday. She re-discovered her American Girl Doll around Christmas so for her special day I took her to Chicago to the store. Bobby and his daughter went with us and we stayed overnight in Chicago since it was a 5 1/2hour drive one way. The girls were amazingly well behaved during the long car ride. We stocked up on dolls, coloring books and crayons before the trip and we took the laptop for them to watch movies on. Naturally the excitement was too much for 2 little girls and they slept all of 5 hours last night.
I could have dropped a small fortune in that store easily. There were so many cute outfits for Nicki and of course the matching ones for Zoe. She ended up getting Nicki a bathing suit, an ice skating outfit (with ice skates), a party dress, jammies, a summer outfit(with flip flops) and a dog named Honey. I also bought a pink American Girl t-shirt for Zoe since all the other gifts were for Nicki. Oh, and she she got Nicki’s hair done at the doll hair salon. That’s right. I said the doll hair salon.
I wish we had a store closer than Chicago, but I’m kind of glad we don’t. Nicki & zoe would look great, but we’d probably be homeless.
Nicki's new do!
Zoe & Nicki
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Colleen from Dr. Boyle’s office called me a little while ago. She said they have a letter from Zoe’s donor family and she wanted to know if they could forward to us. I all but jumped through the phone! We’ve been waiting for this letter. She said the time frame for every donor family is different and ours decided it was time. I’m anxiously awaiting this letter. I’ve wondered since the day we got the heart who it came from. I’m finally going to getmy opportunity to thank this amazingly generous family who has gave me back my daughter.
I just wanted to share this with all of you who visit the site.
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You have all been so wonderful sending positive thoughts and prayers to not just Zoe, but her 2 transplant friends as well. As you know Zoe’s friend Aly passed away last summer while waiting for her 2nd heart in less than a year. I know I’ve mentioned her other friend Melanie who received a heart in October 2008. Mel had some difficulty last year and fought off rejection but had to have a pacemaker put in. She then went back on the transplant list and got her 2nd new heart early this winter, November I think. Well Mel is in severe rejection again. She’s back in the ICU on a vent and is receiving plasmapheresis and dialysis. Please forgive me if this information is entirely correct. I’m getting all the information 3rd hand. I’m getting it from Zoe’s dad who isgetting it via Aly’s mom who I believe is getting it from Mel’s mom. I haven’t given Zoe all the scary details, naturally. What I have told her is that Mel is having some trouble with her new heart and is back in the hospital.
I’d appreciate any prayers/positive thoughts you can spare for Melanie and her family. I can only imagine what Mel and her family are feeling right now.
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