Tim Daggett Invitational - January 2016

Jordan just got back from his first gymnastics meet of the year.  Together with his team, he travelled to Springfield, MA for the Tim Daggett Invitational.  He competed again in level 5.  Jeff accompanied him abroad over the weekend of January 29th - 31st.Grandma H and Grandpa Michael joined them (and shot some of these great pictures too.)



Jordan was excited.  He's worked hard all summer through the fall and winter, after recovering from pneumonia in August.  He sprang back though, and has been working on perfecting all the events and bonus points.

Back home, Mina, Theo and I anxiously awaited results.  I refreshed the online meet scores at least twenty times, and was glued to my phone, texting Jeff for the details.

"How is he?  Is he nervous?  Does he seem nervous?  What did he eat for breakfast?  Remember not to give him a huge lunch before he competes!  Stick with a big protein breakfast in the morning, and keep him away from junky snacks!"

I was obviously more worried than Jordan.  He did amazingly well.  Out of six events, he medaled in four of them.  His scores were high enough to put him in the top ten gymnasts in his division.  Out of 47 boys, he ranked 9th.

It hasn't been forgotten that this meet came on the same week as the anniversary of Jordan's heart transplant (January 26 - 11 years ago.)

Our heart angel, Breanna, lives on and lives strong.  I hope she would be proud of what her guy is up to.

This is what a transplant patient can do.

3



5













Breakdown:
Floor - 9.5 (11th)
Pommel - 10.2 (8th)
Rings - 10.8 (6th)
Vault - 9.5 (12th)
Parallel Bars -9.9 (11th)
High Bar - 8.9 (12th)
All Around - 58.8 (9th)

Summer Setback, 2015.

Unfortunately, Jordan's camp experience didn't go as planned this year. After a week at gymnastics camp, he came down with a high fever.  He complained of chills, pain and was sleeping constantly.  The camp nurses brought him to urgent care and his chest was X-rayed.  He was eventually diagnosed with pneumonia. Phone calls from the health center are not what any parent wants to get when their kid is away at camp.  It's especially hard when you aren't even in the same country.  Funny to think that last year's big health drama was a call from Mina's camp warning us that one of the bunk mates had to be treated for lice. 

Simple times.

Jeff flew out to the States early, withdrew Jordan from camp and brought him to Grandma H's to recover.

Over a few days, his fever continued, despite Tylenol and antibiotics.  The infection in his lungs remained and he got very dehydrated.  We made the decision to admit him to an ER in Pennsylvania, and he began IV fluids and new antibiotics.  Jordan's cardiac team at Columbia was in touch with the hospital to discuss testing and medication.  Jeff has been by his bedside the whole time.

A couple days later, Jordan is recovering (fingers crossed).  More tests continue to make sure the infection isn't in his bloodstream or affecting his heart or organs.  That is really scary to even think about.  His fever is down for now (fingers crossed) and Jeff says he is starting to go back to being his normal, goofy self.  See pic below once fever broke.



Jordan was supposed to be enjoying the last couple weeks of August in the same camp that Mina is in right now.  Obviously that isn't going to happen.  I emailed the camp director and asked that Jordan be withdrawn due to medical reasons.  They were understanding about it.  Jordan hasn't said too much about not getting to go, at least not yet.  I'm also not there with him, so I have no clue exactly what he's thinking.  I'm still here in Bermuda, with the baby, trying to process all of this from afar.  Traveling with the baby and trying to juggle his care while being in and out of the hospital didn't seem to make much sense at the time.

I think that's the reasoning.  I don't know.  I regret not going.  Trying to gauge how Jordan is doing based on emails, texts, phone calls and Facetime is not the same as being physically present in the same room with someone.  I'm feeling massive amounts of guilt as a mom, as well as a bit of resentment.  Who cares if it was a hassle with the baby? Why did I agree to stay home? Maybe trying to make everything run smoothly shouldn't have been a priority. I don't know why I agreed to this.  I am kicking myself. 

The other thing that's been bothering me about this situation is the feeling of let down on Jordan's behalf.  Maybe he doesn't care right now that he missed out on the rest of camp, the adventures to Hershey Park, the water slides in the lake, the bungee jumping and overnights in a tent with campfires and s'mores.  But at some point, he's going to think about it, particularly when Mina comes home and talks about what a fun summer she had.

I really wanted them both to have a fun summer.  That's why we agreed to let them go to camp again this year and for a longer period of time.  I put aside any doubts  because both of the kids have gone to camp before.  I put aside any doubts about Jordan's health because I trusted he would be well cared for.  I made the call, as I have done a million times before, to treat him like any other kid and not let being a transplant kid affect every aspect of my decision making.  I never wanted that to be the defining characteristic about him.  I just wanted him to be normal.

I keep telling myself that any kid could have come down with pneumonia at camp.  It's not just something that happens to a transplant kid.  When you make the call to treat your immune-suppressed kid like everyone else, you have to be willing to accept that shit will happen sometimes.  And then you get to second guess yourself to death.  Did I do the right thing?  Should he have stayed home?  Was it too much expecting him to be away by himself?  Was there something I should have done differently, said to his counselors before, packed warmer clothes?



Jeff sent me this picture today.  Jordan is off the IV drips and is walking around again.  His temperature is still down, but they are going to keep in the hospital one more night to observe him as they switch him to an oral antibiotic, and to see if he can keep his fluids down.  He looks incredibly big in this picture, as he sits there goofing off with a surgical mask.  I don't know how other transplant parents manage the balance of achieving a semblance of normality for their kids.  Ten and a half years later, I'm still trying to figure it out. 

We've never let Jordan's health issue dictate how he was treated when it came to basic matters.  He started preschool at two and a half, was surrounded by regular kids, exposed to all the same germs and colds they were.  He was always carted around to parties and play dates and big open pits of germ ridden balls at play zones.  He's gone to amusement parks and flies on airplanes.  In short, he's pretty much been a regular kid.

With the exception of this year (when we pulled him out of school for a week during a chicken pox scare) I don't recall any major incidents of altering normal behavior because of his immune issues.  Granted, some of my blasé attitude is because Jordan is on a very low dose of suppression.  Comparably speaking, his level of medication is minimal.  When we inform his anesthesia docs and nurses before every biopsy about his meds, they look incredulous.  Most transplant patients take a lot of meds.  Jordan has been lucky.  In so many ways.

I am going to try not to let my attitude affect Jordan's reaction to this.  If and when he decides to talk about it, I need to help him put this in perspective.  He missed some fun at camp.  That is a real bummer.  Sometimes bad things happen.  But there is still some summer left before school starts and we'll have to find a way to have some fun at home.  I'll leave my sober depressing thoughts for after he goes to bed.

June Happenings, a/k/a the week I home schooled my kids

June.. the last month of school. With only a few weeks left, and nothing but endless class parties and beach trips to look forward to, I was gearing up for the final stretch. Unfortunately, the universe was not on board with my plan, as I soon discovered.

"Mrs Trimarchi, can you please call me back as soon as possible? We need to discuss something urgently. There's been a confirmed case of chicken pox in your daughter's class this week," said the chirpy voice on my phone message.

Most kids these days get the chicken pox, i.e Varicella/varivax vaccine early on, and a booster at roughly 5 or 6.  Mina had both of them before we moved to Bermuda.  So I wasn't too worried about her. 



Unfortunately, there's this guy to worry about.  He can't have a live virus vaccine like this one.  As a transplant patient, chicken pox is considered "life threatening" according to his cardiac transplant team, whom I immediately consulted.



"You'll have to pull him out of school, to be completely safe.  If he is exposed, he will have to be hospitalized and given antibodies to fight it off.  It's preferable to keep him home."

And so we did.  In an abundance of caution, we kept Mina home too.  Just for a week, to see how severe the virus was spreading in the school.  The lower primary school had 16 confirmed cases, which then made it up to the upper primary through siblings.  Jordan and Mina are at the upper primary, so I was hoping their exposure during the incubation phase was minimal.



Of course, I was also worried about this guy, who is too young to get the shot.




So, with all three kids at home, and unfortunately no sitter that week, I created a school plan:

Reading
Math
Science/I.T. (computer work)
Practical skills
Music
History
Art

Each day, we got to it.  It wasn't easy, but the kids rallied and actually did the work.  They read daily, practiced their instruments, worked on art projects, including one Mina had due in school the next week.  We studied a history lesson (Bermuda Heroes Day) and learned how to research a topic online using multiple sources.  The kids learned about the history of vaccines, and as part of their computer work, created a narrated power point presentation which we sent to their teachers.  We got a field trip in as well to the local aquarium (a first for Theo).  For practical skills, they learned how to do their own laundry and read a recipe and make it from scratch.  And to celebrate, had a beach day on Friday.

Best parts:
No rush out the door in the mornings, so Mina could sleep in.  No lunch packing or yelling to "Don't forget your water bottle!"  We got to decide when we wanted to do what lesson, and the kids could choose what they felt like working on.  If they wanted more time on something (Mina's 3D chair construction) then they could do it, as long as they worked on the rest of the items later.

Worst part:
Having no real clue what I was doing and winging it.
Nagging, as usual.
Juggling baby through various tasks while supervising big kids working.  Still finding time for the daily grind of grocery shopping, cooking, cleaning, etc.

But, we survived.  Kids are back in school now for the final days.  A couple more cases of chicken pox, but I think they made it through the worst of it (fingers crossed.)

God bless the teachers, and especially those who manage to do it at home with their kids. 

You are amazingly patient human beings.  One week was fun, but I can see the novelty wearing off very quickly.

Throw Back Thursday - January 2006

My FB wall is always flooded with #TBT pictures, but the ones I like best are those that put the picture into context.

This was Jordan's first birthday party - January 2006.  All parents remember their child's first birthday, especially when they are brand new parents.  For us, Jordan's first birthday held special meaning because he had survived his first year as a heart transplant kid.  It was such a big deal.  We were so weepy with gratitude and happiness. 

Those anguished weeks of being in a hospital sitting by his side, watching his still body on an ECMO machine were slowly becoming a memory.  There were months of uncertainty while we figured out how to give him medications, marking off the times on checklists, measuring how much he ate, how much he slept, around the clock, nursing him every two hours, driving him to clinic twice a week, crying along with him when he could no longer sit still through EKG's, Echos and stickers being pulled off his torso. 

Between struggling with balancing his medical needs, we tried so hard to treat him like a normal kid.

That first birthday felt like such a weight had been lifted. 

He made it.  And we were so happy to share that moment with our family and friends.   

Heart Cath - happy tales.

Jordan had his biopsy this month - the annual - and as far as these things go, it went surprisingly well. His results, thus far, are good; and there are no signs of rejection. He was pretty nervous about this, teary-eyed in the car getting out, and stressed about the anesthesia mask they use.

But, he got through it. Some combination of sedative, given through an IV (I must remember this for next time) and the right dosage of anti nausea medication seemed to work. For once, he wasn't throwing up after it was over. He even managed to sleep through most of the five hours he was required to stay still in recovery.

The hardest part was bringing him into the cath room, which is in desperate need of a child-friendly makeover. It's such an intimidating space - filled with enormous machines, electronic screens, and so many masked people, hovering around a empty table waiting for you. Jordan instantly tenses up when we walk in there. I carried him in.. and it might be my last year doing this.. he has gotten so heavy! On the table, he cried. He also said that he wished he had never had a heart transplant. What can you say to that? He was in panic mode, I think. It was hard, so many people were talking to him all at once, in an effort to calm him down. He did finally focus on me, and I talked him through the doctor putting the IV into his hand. It was a shame she couldn't do it in one shot. So we started again - me telling him to look at me, focus on me, take deep breaths. Jordan actually made it easy for me. Earlier that morning he was telling me a story about his friend at school, and a game they played called "skunk breath."

Boys.

But, I reminded him of that and we blew skunk breaths back at each other till the IV was in. Then we waited till the sedative kicked in, watched his eyes get drowsy, and then kissed him good bye for now.

Mina was such a champ. She insists on coming along with us now, and during the whole day in the hospital, she kept herself amused. I brought along some things for her to play with. She read from one of her chapter books (love that she is into reading for pleasure now!) and the social work staff at the hospital did an amazing job checking in with us, letting us know about activities scheduled for the families that day that she could participate in. Having Grandma H and Michael around was a huge help, as they kept an eye on her while we waited bedside with Jordan.



Back at the hotel room that evening. So glad it was over! We always celebrate with pizza in the evening.



The next night, we took advantage of being near NYC. Jeff introduced Jordan to his old place of employment - The Blue Note, in Greenwich Village. Jordan seems a bit confused here, but both kids were mesmerized by Michel Camilo, who performed with a big band. He is such an phenomenal pianist. Seeing him with a band as large as he had was such a treat.



Jeff snapped this pic of me and Mina on the airtrain in Newark. Mina has reached the stage where she dresses herself completely. As you can see from this picture, we have radically different styles, but that's ok. I always go to her when I want my outfits styled for a night out.

Her leopard print ensemble was made perfect when a couple offered her their leopard print umbrella. They said they had noticed her, and decided she would be the one to give it a good home.



Never fear! Oscar was well cared for in Bermuda. Here he is basking in doggy glory on the pink beaches of the island. Thanks Jim!



So, I am breathing a deep sigh of relief that all is well. Back to normal!

Every heart has a story to tell.

November 5, 2004 - January 25, 2005.

"May your heart always be joyful.
May your song always be sung.
And may you stay ... forever young."

-Bob Dylan.



Nine years ago, a little girl was born.  She was loved. From the smiles on her mother's face, you  knew how much she was loved.  A baby girl, wrapped in pink, with crystal eyes - she looked like an angel. 

If only there were more pictures of her, more memories of her, more chances to hold her as she drifted off to sleep.  One more chance to say how much she was loved.




Today would have been her birthday. 

I'm not her mother, but this day, I will always honor her memory because her life and Jordan's are connected.

Today was her birthday.  And she is still loved.

Because of her, and her mother Nikki, I have my son. 

Dear Breanna,

I will never, ever be able to thank you for the gift your mother gave me.  She gave me a part of you.

Your heart beats on in my boy. 

Your heart has allowed him to do so many amazing things. 

I know he carries you with him every day. 

You make him fearless.



and funny..



And the most loving big brother ever..



Rest in peace, beautiful one. 

November 5, 2011

"What if you woke up today with only the things you thanked God for yesterday?" Anon.







Breanna Maree Loomis.
November 5, 2004 - January 25, 2005

Our heart angel.
January 26, 2005.

Thank you Breanna.
You would have been 7 years old today.
Your gift has given me a reason to be thankful each and every day of my life. But it's the kind of gift I will never be able to thank you for in person.
I hope you know, you will never, ever be forgotten. Your heart has kept my son alive and happy since he was eight days old.

Rest in peace.

We love you Nikki. You are in my thoughts today too. I know this is a hard day for you. I wish I could take that pain away.

Six years old. Six years - post heart transplant.

Six years ago today, Jordan had a heart transplant. He was eight days old. Long before he said his first word, before he took his first step, or even his first bite of food - he faced the biggest challenge anyone could ever face - survival.

So much of those early days now feels like a blur. The doctors walking into the hospital room to tell us there was something wrong with his heart, the agonizing hours spent in the waiting room wondering what would happen next, the prayers said by Jordan's bedside while he lay hooked up to a heart-lung bypass machine. I can recall my tears, those endless tears. Yet, even then ; I remember how much I hoped.

Hope is a strange, ephemeral thing. It burst upon me at the oddest times. Often, when I sat by Jordan's bedside, I felt a surge of hope that almost illuminated his face. Sometimes, I would sit alone, in the hospital's lactation room, and cry. It was one of the few places I could hide. Even there I felt hope. Every time I retrieved a small milk bottle to store for future use, I believed it would not go to waste. I hoped.

My memories fade, but I will never, ever forget the moment we received the phone call.

THAT phone call.

The one which reminded us to believe that where hope exists, miracles will happen. The phone call was from Jordan's cardiac team doctor. She simply said, "We have a heart."

That was six years ago.



Jordan was eight days old.



Today. Jordan at six years old.

Miracles happen, but not in a vacuum. Without the heart angels who blessed our path, our story might have been a very different one. Jordan survived because someone made the decision to donate her baby's heart. Every day, others face that same choice. Some choose to say yes. Some aren't even aware of the option.

Donate life. The gift you give transcends a lifetime.



Thank you Nikki. Thank you Breanna.

Forever.

On this day.

"What's this!," Jordan asked me last summer, as he pointed to the surgical line stretching vertically down the middle of his chest. I paused for a minute to try and gather myself; and I wondered how I could explain the scope of it all to someone so young. Flashes of the hospital, of the machines, of Breanna's face rushed through my mind instantly. Tears, pain, hope and rebirth.

"That's a scar you got when you were a brand new baby." I said. "You had to get a new heart, so the doctors opened up your chest, put one in, and then sewed you back up."

"With a needle?" Jordan asked, incredulously.

"Yeah... kind of. A very special needle."

"Needles are for grown ups." He replied.

"Yes." I said. "They are. But you needed a new heart,because your heart was broken. So they had to do it." At that point, I showed him the framed picture of Breanna and Jordan as babies, which I kept in the office bookshelf.

"This is the little girl who gave you her heart."

"Her name was Breanna."

He stared at the picture silently.

Mina: "How come I didn't get a new heart? I want one too!" The two of them began yet another round of sibling rivalry and I turned my attention to something else.

But on this day, I'm reminded of Jordan's question. It was one of the first times I can remember him asking directly about his heart. And the story that goes with it.

On this day,



an angel was born.

She graced us for just a short spell.

Like a rainbow, or the rays of the sun shining through the clouds across the ocean when it sets. The moment lasts for just a few minutes; but the memory remains in your heart forever.



Each year, I reserve this day to remember Breanna Maree. And this year is no different. This is the angel that saved my son. Her heart kept my son alive when just about everyone else had given up hope. She saved his life. One day, he will be old enough to understand just how lucky he was. One day, he will realize that he was given a second chance at life by someone whose own was cut short too soon. That will always be the bittersweet note that makes me pause when I see that scar.

Had she lived, she would have been six today. Rest in peace Breanna. Two hearts became one on January 26, 2005.

We will never forget.

All set till August.

One challenge about blogging is keeping it up with respect to real time events. I've been lax about following up with key news. For example, Jordan's recent biopsy on Friday resulted in zero rejection. Yay!



Normally, it seems like biopsy days generate nothing but anger and hostility in me. But this one, overall, wasn't as bad as it could have been. Coming from me, that's just about the highest praise I can offer for the experience. It wasn't too bad.

We got there early, as usual. Too early - as usual. We do that because they want us to get Jordan's bloodwork done in advance. We were greeted by a receptionist, Ms.S., who was just about as sweet as you can imagine. She's been with the hospital since we started and she knows Jordan. She showered him with compliments and praise, and listened intently to him as he answered her questions and commented on all his remarks as he sat there waiting. While Jordan read aloud from his World Atlas (this warrants a whole separate post), she commented admiringly. When he chatted about foreign countries and places he would like to travel, she cooed over him like he was a child prodigy. I tried to hide a small smile.

And then we went down for bloodwork. And Jordan rocked it. Seriously. He did not cry or fuss. He practically chatted with the phlebotomist while she drew one vial after another. I was stunned. I was awed.

One thing that struck me about this biopsy was Jordan's insistence on refusing to take sedation medication in advance. The practice has always been to give him "something" to calm him before he gets anesthesia. This "something" is a sedative cocktail that comes in a syringe that the nurse hands me, and expects me to give to Jordan. There's nothing more fun than giving foul tasting medicine to a child who hasn't eaten anything in 14 hours.

The night before the biopsy, Jordan told me he didn't want to have "any pink stuff!!" As he put it, "No pink stuff mommy!!" I promised him I wouldn't give him any. And I stuck to that. When the anesthesiologist came in to discuss the case pre-op, he started getting ready to order the pink stuff, and I said no. It was a rare moment of me speaking up and saying exactly what I felt the standard of care should be in the situation. I simply said that Jordan was very insistent on not taking the medication, that it was horrible tasting, it upset him worse that anything else.

They like to give him that stuff so that when he goes into the OR, he's calm BEFORE getting the anesthesia mask. It dawned on me that they are doing this for their benefit, not the patient's. So, I said, "We aren't giving him the pre-sedative. It upsets him. Even with the sedative, he's upset when he gets the mask. So what's the difference? We'll just have to deal with it together. He'll be upset, but we will go in there with him and try to keep him calm."

The doctor paused for just a second, and said ok. And yes, when we brought him into the OR, he was upset about getting the gas mask - as always. But I was able to reassure him that he would NOT get the "pink stuff." Small victory. But it mattered to me.



The biopsy itself went fast. Really fast. A "doctor" came into the waiting area to tell us that the preliminary results looked good. I was under the delusion that this was one of the fellows, because he looked so YOUNG. As young as my youngest brother, to be exact. And he looked just like him, so naturally, I immediately dismissed him as a Dr. in training and thus not worthy of me really paying attention. I swear, I assumed the doctor had sent this clown in to just tell us the news.

Jeff corrected me. He said, "He DID the biopsy! You're too busy being angry to even pay attention."

He's right. I do go in there now gunning for a fight. I need to rethink that. The doctor was nice. Even if he was barely old enough to order a beer in a restaurant. The admin staff was kind and generous and thoughtful with their gifts and compliments. The nurses were efficient and practical and did not prolong the painful parts. It wasn't too bad.

And it's over for now. No more clinic till August. Yes!

Biopsy day - blech.

It had to happen sometime. Today, Jordan was scheduled for a routine biopsy. Got up at the crack of dawn as usual, got Mina to school (not happy that Jordan was not coming in with her), got to the hospital by 8:00. Did some bloodword. Jordan was a champ! Not a word of protest or complaint when the tech drained him of several vials.

Jordan was not actually taken into the OR until 12:00.

Before the biopsy, they did an EKG. Jeff took this pic and Jordan looks like he belongs in a Spiderman comic book.



All things considered, this biopsy was not as bad as most. It helped they put us in a private room, which has never happened before. That helped deaden the noise from the recovery room, and allowed Jordan to rest after the procedure was over. It helped that it was only one ventricle, so that minimized the recovery time (2 hours). It helped that Jordan did not wake up nauseous, as is often the case. The biopsy itself took and hour and a half. The two hour wait after was exhausting, and made worse because Jordan kept crying that he wanted to go home.

Eventually though, he calmed down as he realized that the worst was over, and his only job now was to stay calm, keep his leg still, and watch tv. He should watch me and Jeff at night after the kids go to bed. That describes our couch viewing habits to a t.

We finally got him home. It's become a tradition to allow him to pick out a gift from the hospital gift store on the way out. The only caveat is, he has to pick out something nice for Mina too. The kid is smart. He always picks out the exact same toy for Mina as he selects for himself. He knows she'll be after his in seconds if he didn't.





Or maybe it's just because he knows they share similar interests.

Clinic - March 2010

Of course I hate clinic days, but for the sake of posterity, I feel like I have to occasionally post and preserve what these experiences are like too. As much as I dislike the drill, it's part of our lives.

And it's also interesting to see how the experience evolves as Jordan gets older. When Jordan was an infant, and I was bringing him to clinic twice a week, the experience felt like the most miserable, Kafka-esque maze of bureaucracy and medical inefficiency. I cringed every time they drew blood, missed a vein, drew blood again. Or every time they put adult sized cathodes on his tiny body, only to rip them off in a painful instant.

These days, the experience is different.



Hanging out in the waiting room, eating a two-pack, snack sized Milano cookie... at 8:30 in the morning.



Getting measured in Dr. A's office.

I break the news to Jordan the night before.

Telling him any earlier is useless. Telling him the night before gives him about an hour or two to digest the info and mentally prepare. He's become remarkably relaxed about it. A slight bit of anxiety, but it quickly dissipates. He goes to bed.

The harder part is telling Mina. I wait until the next morning, and inform her that she has to go to school, while we take Jordan to the hospital.

"What?" she says, "I want to go see the doctor too!! I want to go to the hospital too!"

Jordan smiles, like he is about to experience a special treat, all for himself.

I sigh.

I counter, "Mina, you can go on a special doctor appointment too! On April 2, you can go to the Dentist's office. You and Jordan BOTH have appointments, and you can go together!"

She smiles. Mollified for the time being.

I'm raising a duo of hypochondriacs.

At the clinic, Jordan sailed through the blood draw (!!!), the ekg, and even the echo - which took an hour. I can't believe this kid sometimes. He flinched a bit at the blood draw, but recovered quickly. He chatted with the EKG technician and discussed the merits of the small sticker nodes and the pain quotient on them. We lay on the table for an hour in a cold room while the Echo technician painstaking rubbed the sonogram mouse over his belly.

While we waited to speak to his cardiologist, Jordan played video games on the big console with the older kids. Then he sat down at a kid-sized table and drew pictures on some paper I brought with us. I tried to ignore the kid who sat down next to him and coughed non-stop in his face, while snot rolled down his nose. His mother sat there oblivious. (ARGH!!! Lady, every kid in that room is immuno-compromised. How can you ignore the looks of death we are all shooting your way!!!)

This is part of the reason why I don't pull Mina out of school to come with us. There's no reason for her to miss school, and there's no reason to bring her into a hospital environment which is pretty much just a breeding ground for infectious diseases of all kinds.

But, eventually, we saw the cardiologist. Jordan charmed her with his witty dialogue and wacky antics. He discussed made up symptoms to some illness he claimed to have experienced recently (I'm telling you - hypochondriac in the making). The doctor smiled and looked at us inquisitively. I shook my head.

Biopsy scheduled for next month. Blah. Results of blood tests next week. Other than that - looking good for now.

The five year anniversary. Post transplant.

After we put the kids to bed, Jeff and I ate dinner and talked about our day. And as he looked up at the calendar on the wall, he reminded me that tonight marked the five year anniversary of Jordan's heart transplant. Five years ago, we got the greatest gift we could have hoped for - another chance.

We didn't think it would happen.

Jordan went from this...





to this.
In five years.

There are countless thoughts that have crossed my mind over the years, when I think back on what that week was like. I recall hushed conversations with doctors in quiet rooms. I recall the frenzied media attention. I recall standing by Jordan's bedside and praying.

One thing that I will never forget is how stricken I felt when a close family member told me that a heart specialist she knew personally, not affiliated with Jordan's hospital, told her privately that he would not have bothered trying to save him. "It wouldn't be worth it - living as a transplant patient."

I wish I knew who that doctor was.

I'd like to show you what a transplant patient can do.































Where hope grows, miracles blossom - Elna Rae.



The heart that is generous and kind most resembles God.
-Robert Burns