Another Christmas has come and gone. Despite being sick, Zoe enjoyed the holiday. As far as I can tell she got everything on her list and then some. We celebrated at home with all the kids as soon as Bobby got home from work then we went to Papa & Grandma Sherry’s. Today Nana, Grandpa Joe & Grandma Toni came over for a belated celebration. If I had to pick Zoe’s favorite presents I’d have say her new American Girl (one that looks like her including green eyes & freckles – the old one went to her dads), her Lalaloopsey doll and the bunk-bed for the girls American Girl dolls.

That pesky cough has been persistant. After a falling out with the pediatrician’s office (long story short: they refused Zoe a flu shot) we made a trip to the ER last week on Wednesday because the cough was worse, the stuffy nose was back & she was running a low fever. Her chest x-ray showed no pneumonia so the Doc presscribed Augmentin and she’s still using her nasonex and the inhaler. I spoke with Coleen after our E.R. trip and she’s going to call me Monday and if Zoe is still coughing they want her seen at the Clinic by Infectious Disease. So far she sounds a little better but the cough is still there.

My camera disappeared so I don’t have any pictures from Christmas but I stole a couple my mom took today fro her facebook. I’ll post those separately in a password protected post. If you aren’t currently on my list, please take a minute and fill out the form Nikki made or email me. Only those on my list will have access to the password.

Today marks the 2nd anniversary of Zoe’s transplant. Zoe says it’s her heart’s birthday. To celebrate I made 4 dozen cupcakes last night and put red hearts on them with frosting. She took 2 dozen to school, 1 dozen is for brownies tonight, and the last dozen is for the family to eat.

The past 12 months were by far easier than the first 12 months. No major infections and no hospital stays. She rejoined dance and is now in girl scouts. Life looks pretty normal for her, it just has a pink scar down the middle of it.

As always we are eternally grateful to the little boy who gave Zoe the best gift she will ever receive (whether she knows it or not) and to everyone who reads this site and continues to send well wishes our way.

Thank you and Happy Heartiversary.

Zoe has been sick for 6 weeks now. She’s congested, has a deep cough, and within the past 3 days her eyes have gotten puffy, very bloodshot, and sore. During the course of this illness we have made 3 trips to the pediatrician (not everything is a job for the transplant team) and she has been given 2 rounds of antibiotics and an inhaler for the cough. She didn’t get any better, she just kept getting worse so I put in a call to the Clinic doctors last week on Thursday. I got a call back on Monday and Colleen said Infectious Disease wanted to see her the next day. Thus beginning our endless trip around the Cleveland Clinic.

Yesterday we arrive at the clinic at noon to see ID. Dr. Danzinger looked her over and based on her symptoms and lack of a fever, vomiting, diarrhea, she didn’t think there was anything bacterial or viral going on. She was thinking allergies which Zoe has never had. So she sends us over to an Allergist. The Allergist gets her history and takes a look at her and says he thinks she has something viral going. He also had his doubts about a medication allergy we thought she had. When Zoe was 3 she broke out in hives while taking amoxicillin. In the grand scheme of antibiotics virtually nothing trumps penicillin so for her to have an allergy to it severely limits what can be done when she gets sick.  The hives took nearly 3 months to completely clear up and because of this the Allergist said he didn’t think the medication caused the hives. Apparently 3 month hives are NOT a normal allergic reaction so he when he ran his allergy tests he also ran 2 special tests for penicillin allergy. All test came back negative. The test results seemed to add weight to his feeling that she wasn’t having an allergy attack. The condition of her eyes did have him concerned so from there he sent us to the Opthomologist. The Opthomologist, 3 actually, looked at her and said she looked like she had a really bad case of pink eye but felt that her symptoms were being caused by a virus of some sort. They took cultures of the mucus drainage in her eyes and prescribed 2 eye drops, an antibiotic/steroid combo and an antibiotic drop. He also said he wanted to evaluate her again the following day since we would be back to see Dr. Boyle. After the eye doctor we hit the lab for some blood work and were headed home at 6pm. So in our 6 hours spent at the clinic we learned 3 things: Zoe is allergic to nothing (including a medication we thought she was allergic to), people who are allergic to dust mites are also allergic to cockroaches, and Zoe does not like having someone rub her eyeball with a q-tip.  

Today we returned at 1:30 for Zoe’s echo, ekg, visit with Dr. Boyle (just a regular check-up) and her follow-up with the eye doctor. Her echo and ekg were good and Dr. Boyle said her heart sounded good. He thought her ears looked a little infected and decided to treat her for a sinus infection & ear infection on top of the eye infection. He prescribed 2 different nasal sprays for the stuffy nose and amoxicillin for the infection. The eye doctor said he saw improvement in her eyes but he wants to see her again on Monday to determine if one of the eye drops can be stopped. We were on our way home by 5 this time. I’m crossing my fingers that she starts to feel better soon. Currently she’s camped out on the couch because she can’t seem to stop coughing when she lays down in bed. It’s 10:52pm. sigh

Dr. Boyle mentioned this camp for kids with medical diagnoses.  He and Jen (the nurse practitioner) visited the camp for a weekend a couple weeks ago. He said it was pretty awesome. There’s crafts, a lake, horse back riding, etc… He also said they are planning a week during the summer just for kids with heart conditions. He’s not sure what week, but will let us know when he does. She’s pretty excited about it. He said we should plan on a family weekend during that week because the whole family will love this camp.

I hope everyone has a happy Thanksgiving tomorrow!

Biopsy on Friday went well. Results were 1a and 0 again, so perfect results everytime thus far.

Zoe made a new friend while recovering on M40.

Zoe and Paris

LifeBanc posted their pictures from the event today.  You can go to their facebook page to view more.

Zoe in The Green ChairTeam photo taken after the walk by LifeBanc

Team photo taken after the walk by LifeBanc

I’d like to give a special thanks to Sharon, Zoe’s nurse from the Clinic, for running the 5k for Zoe on Saturday. It stinks that we never found each other but I’m honored that you ran in honor of my daughter.

Today was the LifeBanc Gift of Life Walk/Run.  A record breaking 1,500 people turned up at Blossom Music Center for the event. Zoe sat in “the green chair” and got her picture taken. She also talked a little about why organ donation is important to her. The picture’s from the event should be posted either to LifeBanc’s site or to their facebook page. As soon as I see them I’ll post a link here.

I’m happy to say that Team Zoe’s Heart raised $320 for the even today. That’s $120 over our goal. We plan to participate again next year and I’d love to see Team Zoe’s Heart grow in number next year. There were some impressive teams there walking and running today.

Please visit www.lifebanc.org for information on donating, events, and registering to become and organ an tissue donor.  They said on the news tonight that there are currently 108,000 people waiting for organs and tissue transplants. 1,800 of those are in Ohio.

Clockwise: Me, Nana, Grandpa Joe, Cousin CJ, Aunt Nikki, Zoe (of course)

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.

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

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.