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. 

It’s been a long year. We’ve had reasons for celebration and reasons for tears but amidst it all we’ve come a long way. Zoe had her 1 year biposy on December 20th. They went in through the neck, as usual, as well as through her groin. The recovery took a little longer. She had to keep the leg they went through straight & flat for 6 hours post-procedure. Her cardiac output is good, all her pressure are good and the results were double 0′s. Those are perfect results if you’re curious.

Zoe goes back to see Dr. Boyle in February and she has a biopsy in April.

I hope everyone had a safe and happy holiday.

One year ago today we celebrated Zoe finally getting a new heart. She came out of surgery rosy cheeked and red lipped. It’s been a roller coaster year.  Double hip infection, seizures, CMV, and not to mention the hospital stays. She’s grown taller and wider. She had to have a whole new wardrobe this year because she hasn’t needed new clothes in 2 years. Her hair is longer and she’s a 2nd grader now.

We’ve been blessed and we know it. Amidst all out happiness I can’t help but think of the other family out there somewhere with an anniversary of their own. One year ago today a family lost a child. I don’t know who & I don’t know where yet but I’m eternally grateful for the gift they’ve given me. I can’t thank them enough.

I also can’t thank enough our faithful Zoe’s Heart  followers. You are the reason this site exists still today.

Today is a special day for us. I’m sure my sister will post her own thoughts on today when she gets the chance but I’m going to jump in here and give you a peek at how I’ve felt over this last year.

As many of you already know Zoe got her new heart last year. One year ago today as a matter of fact. For me, this day trumps all other national holidays. Christmas, New Year’s and even Thanksgiving no longer hold a candle to December 2nd.

My nephew lovingly dubbed it “Heart Day” in a text message last year to my sister. He sent her a text on his cell phone a month or two after the transplant that simply read, “Happy Heart Day.” As this year has passed, I’ve tried to mark each Heart Day with a silent prayer and a thank you to the family who gave so selflessly. Without their gift… well, we don’t think about that. What I do think about is how blessed we are, how much we love this little girl and how complete she makes our family.

Chrissy and I used to joke when our girls were smaller about “the future” and what kinds of trouble the two of them would get into. I can’t speak for Chrissy but when I think about our girls now, I am excited to see the trouble and adventures the two of them may have together. They are as close as cousins can be; I’d dare go so far to suggest that they are as close as sisters.

I don’t think about what this year could have been like if a heart hadn’t arrived in time. Instead I think about how funny it is to watch Zoe come to my house and care for the cows with my son, how in a two hour span she can go through every “dressy” piece of clothing my daughter owns while playing, how sweet and kind she is with Noah, how her and Ethan seem to be cut from the same stubborn mold, and I even laugh a bit when she gets angry with me for telling her No or taking on a diva attitude when I lay down the law while she visits. Zoe may not think it’s funny at the time  but to me, it is. It’s a part of her growing up that I couldn’t wait to see.

My sister and Zoe have seen the passing of a transplant sister and another one back in the hospital as she is placed back on the transplant list. Watching Zoe reach this milestone has been nothing short of a miracle. We know that and we don’t deny it.

Last year when the call came from my sister that a heart had arrived, I was shaking and I was in tears. I skype called a group of moms I’d been chatting with and IM’d a dozen more people and cried to them that I was on my way to the hospital because a heart had finally come. They must have thought I was nuts and maybe I was a little bit at that moment but it was a day that we’d wanted for so long.

Every day since then has been a miracle. Every day forward will continue to be a miracle.

Flu season is upon us. I’m seeing schools closed for illness & donations are down at the blood bank because everyone is sick. Frankly I’m a little nervous. Zoe has gotten her seasonal flu vaccine but not her H1N1 because no one on the planet has any (that may be a slight exaggeration but you all get my drift). Gabe & I haven’t gotten either because, again, no one on the planet has any. Hopefully we’ll hold out until early November.

Trick or Treat is tomorrow and Zoe is especially excited because my boyfriend & his daughter will be joining us. I need to thank someone for Zoe’s costume & I’m soooooo sorry but I’m not sure who. If you read this, and you are who I’m thanking then please step up and let me know! Last year I was emailed a gift certificate for Zoe through http://www.princesstimetoys.com/ . I hadn’t used it and money was tight this Halloween so I’m glad I saved it. Zoe will be Glitter Kitty. The gift certificate covered the costume, petticoat, and shipping. I ordered it Thursday & received it Monday. Talk about fast. It’s hanging in the closet waiting for tomorrow night. Every night before bed Zoe asks to look at her Glitter Kitty costume. lol I’ll be sure to post pictures of her in her costume soon. So thanks so much to Princess Time Toys for the gift certificate. Zoe & I are most grateful!

As Zoe approaches her one year anniversary with her new heart, we can’t help but know and feel how truly blessed we have been. When I reminded my oldest that we were coming up on a year, he seemed to be in a bit of disbelief over the fact that almost a year ago that we received the best gift in the whole world. But then he sat down for a minute, looked very thoughtful and said, “Is that really possible?” Of course it’s possible, hard to believe, but here we are.

As Chrissy had mentioned though, we expect the cost of her medicines to rise. I read a very scary news article about a woman who received a new kidney and then had to have another transplant because Medicare stopped paying for her anti-rejection medicine, since she couldn’t afford her medicine on her own, she rationed her medicine!

Luckily, Zoe has medical coverage outside of Medicare/Medicaid but the reality is that this could happen to anyone, even a child, and as anyone knows, even the insurance companies could change their policies and leave Chrissy struggling more than she is now.

That’s why we are always thinking of ways that we can make sure Chrissy is able to pay for Zoe’s medicine. Last year’s fundraising was a success but we’re looking towards next year and anticipating costs rising again.

We quickly put together a garage sale to start off fundraising this fall (more fundraising information to come in the next few weeks, I think we’ve got something for everyone!) We kicked it off today and even the rain didn’t keep people away!

The garage sale will run through Saturday and Sunday, we’re hoping that the weather evens out and cooperates a little bit.

The garage sale opens at 9 am Saturday and Sunday and closes at 5pm each day. Here are some of the items we have available:

• 4 place setting china with crystal stem ware
• Porcelain Dolls (including a bride doll)
• Cabbage Patch doll
• Collection of Scarett figures in globed stand (I think there are 6 or 7 of these)
• Electric Lawn Mower,
• Dessert fondue
• Sleeping bags (Kids)
• Bikes
• T-Fal Safety Fryer
• Electric Wok
• Yogurt maker
• Ice cream maker
• Pasta machine
• Kabob it cooker
• Collectible tins
• Mixer set
• Galloping Gourmet roaster/cooker
• Lego set
• TV Trays
• Leather and Suede jackets
• Jewelry
• Books
• Movies
• Kids Stuffed Animals
• Girls Clothes (sizes small to large)
• 5 piece living room set
• Computer Games (kids and family)
• Housewares items (sheets, etc)
• Antique Style working telephone
• Wooden Rocking chair
• Outdoor lantern (hangs on the side of the house? – still in box!)

I’m sure I’m forgetting some things but you get the idea – there is a lot to choose from!

All items came from our homes and generous donations from family and friends. Except for a few items, all we ask is a donation, meaning we are taking offers for nearly every item listed.

The garage sale is located at:

44553 Hallauer Road, Oberlin OH 44074

If you’d like to come out and look, please do! If you’re not a fan of garage sales (or you’re too far away), you’re welcome to use the donation button in the sidebar. All monies received go directly to help cover the costs of her medicine this next year.

We are tentatively planning two other fundraisers and will have more details on them and how you can help in the next few weeks.

Last but not least…

When Zoe was last in the hospital, right before her 7th birthday, her and I spent the evening making a slideshow on my laptop to pass the time. Zoe picked from the pictures I had stored on my laptop, the song, the order of the pictures and even the effects. Before we put the finishing touches on it, I asked who the slideshow was for, and she said “my mom and dad”. I shared this slideshow once on my site but time got away from me and I forgot to post it here. I hope you all enjoy it.

For her Mom and Dad from Nichole Smith on Vimeo.

I apologize for the delay in updating everyone. School started for both kids and myself and we got a little caught up. Busy, busy, busy.

Zoe is doing well. She’s getting over bronchitis but it’s been like any other kid with bronchitis. Trip to the pediatrician, antibiotics & cough medicine (which she refused to take because it smelled bad). She’s almost completely over it and just in time to because she has a biopsy on Tuesday Ocotber 13th.

We’re coming up on our year which drops her risk some so we’re pretty glad.

These past few months have been such a change from this time last year. She plays gym (apparently she’s a dodge ball champ, if you ask her anyway) and I’m working on getting her signed back up for dance with Miss Colleen at the YWCA. She hasn’t danced in 2 years because she was too sick but she plans to return to ballet and try to hand, or feet rather, at tap. Soccer may be a possibility in the spring or cheerleading, whichever she decides on. This time last year she was so tired and throwing up at random. She missed the Halloween walk at Carlisle Reservation that we do with my dad, sister and her kids every year because she was throwing up. She gets to go this year and it’s all she can talk about.

I was to thank everyone for their continued support. We are working on fund raising ideas for the new year to help offset the cost of her medications. Her prograff (anti-rejection that will she take for life) is $200. That’s with insurance by thw way and I anticipate tht cost rising to $300 come January. Check back often. I’ll try to update more regularly, but if you don’t hear anything that means there’s nothing to report and that’s the best news we could have.

Zoe has been doing really well since her last bout of CMV. Her PIC line came out mid June and every CMV test we’ve had since has been negative.

She had an appointment with Dr. Boyle yesterday. Everything is fine for once. She’s due for a biopsy in about 3 weeks.

Her turoring is going well. She has her last session tomorrow. She’s worked very hard and will be a 2nd grader on September 1st when school starts again.

It is with a very heavy heart that I post today. Early this morning Alexandra Courville passed away. She was Zoe’s friend who received her new heart 2 weeks before Zoe got hers. Aly had been back in the hospital for the last 6 months. Her new heart wasn’t working out and she had recently been re-listed. She suffered a stroke earlier this year & had undergone brain surgery in May or June (I don’t remember exactly). Her kidneys had failed and she was removed from the transplant list because her body was simply too week. Yesterday she made the decision to be put on a mechanical heart, The Berlin Heart http://www.childrensmemorial.org/depts/cardio/thoracic/berlin-heart.aspx, to sustain her while she regained strength enough to be put back on the list. Aly didn’t survive the procedure.

My family holds Aly’s family fondly in our thoughts. Aly was the strongest, bravest person I’ve ever met and she was only 15. She is greatly missed.