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.

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.

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.

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

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.

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.

I quickly just read an old post from the archives from November and I have something to add to my last post.

Children read this site so I try to keep clean when I’m mad about something. Those who know me understand how hard that is sometimes. This isn’t the first time someone hasn’t liked what they’ve read here. I have something I need to say to those people and the people like them. Build a bridge and get over it! You don’t get to sit behind your computer and judge me. I will not apologize to you or anyone else for who I am and what I say. Who I am helped make my daughter who she is and who she is helped her survive. Unless you’ve been though what we’ve been through, you’re opinion counts for squat. You can take that opinion and I think you know where you can put it. If you don’t, ask. I’m happy to point you in the right direction. I very nearly lost my child. I spent more than a month knowing she was scared and watching her suffer and slip away from me and there was NOTHING I could do about it. I don’t wish that on anyone. If your children are healthy, hug them and give thanks to whom ever it is you give thanks to, but don’t come here and pass judgement.

Everyday I look at Zoe and I’m thankful for her. I kiss her and tell her I love her every chance I get and she never gets tired of it. So instead of getting your panties in a bunch about something you read here (no one makes you visit the site by the way), re-direct your energy. Stop being angry about stuff you can’t control or change and be happy for what you have even if it isn’t everything you hoped it would be.

To Zoe’s faithful supporters: Thank you (again) for letting me vent. Zoe & I are glad you still care.

I do have a short update from Zoe’s appointment with Dr. Boyle last week, but first I have an issue I need to address regarding zoesheart.com.

It has been brought to my attention recently that a portion of my last post offended someone. This individual was appalled at the idea of Gabe being left in charge of 2 little girls on an airplane. The little winky face at the end of the sentence was obviously missed and my sense of humor misinterpreted. Rest assured concerned citizen, Gabe will not be left in charge of ANYONE (including himself) on the flight to Disney. Steps will be taken to ensure that ALL minors on the trip will be monitored continuously by one or both of the adults traveling with them. I hope this puts all minds at ease.

That said, I feel I need to add something in regards to the content found on this web site. As most of you know, this site was started by my sister as a method of letting me update everyone at once on Zoe’s condition while in the hospital. As she continues to improve I update less and less. This was my goal all along as no news is good news where Zoe and her heart are concerned. The opinions expressed on this site are solely my opinions. They do not reflect those of anyone else nor are my opinions meant to be taken as fact. They are what they and nothing more. If something I say here offends anyone or anyone takes issue with anything here please contact me via this site. All comments are approved by Nikki or myself before being put on the site. If you have a more direct method of getting in touch with me, I encourage you to do so.

Now the quick update. Zoe is now 4’1″ and weighs 56lbs. That’s impressive considering at transplant she weighed 34lbs. Dr. Boyle gave no travel or ride restrictions for Disney. My little dare-devil couldn’t be happier. Her next biopsy is in April and she’s due to have her Prograf levels checked before then.

Tiny Dancer

Dance classes have resumed. It’s been 2 years since Zoe has been well enough to dance.  She’s back in ballet (which is a contact sport for those who aren’t dance moms) on Saturday mornings and she’s added tap this time around which she does Monday evenings. She will be dancing in the big recital in June and she’s very excited. She still has her costume from 2007.

All is going well. She has an appointment to see Dr. Boyle next Thursday for her follow-up and her next biopsy will be in April.  She’s decided that when we go to the Clinic next week we’re going to take some stuffed animals with us to donate to the hospital. She has so many and knows how important they were to her in the hospital. She wants to make some other kids happy too.

School is going well for her but I think I need to invest in a tutor. She missed so much last year and even though she worked so hard to get to the 2nd grade it’s beginning to catch up to her. She’s starting to struggle and it’s frustrating for her.

We’ve planned a trip to Disney World in April during spring break. Myself, Gabe, Zoe, a family friend and his daughter are all going. We’re staying at the Nickelodeon Family Suites in Orlando. Our friend  has never flown (and is terrified) and I get air sick if I’m awake so this should be an interesting trip. Gabe may be in charge of the girls on the plane.