So we have made it through our first illness..

Well kind of...we are just about over it!

Only July 31, I was all set to post that Alexa had made it a whole year without any hospital admissions.  In fact, she made it a whole year without any ER visits at all!  Crazy!  When you averaged at least one ER visit a month, going a whole year is a huge celebration!

However, the night before this, she got ridiculously bad abdominal pains accompanied by one random vomit.  Oddly enough, it must have been one of those 18 hour bugs, because quickly she was back to her busy happy self....

ER averted....yes! However, I thought posting the year milestone, might be too much of a jinx to ourselves and so I let that milestone go quietly by, celebrating to myself and thanking the Lord for the amazing year of health he has granted Alexa.

Fast froward to this week....

On Friday afternoon, Alexa came to me and said she was cold--it was 30 degrees outside (celcius). She was tired and wanted to nap--alexa stopped napping a year ago.  I knew something was up....felt her head and knew she had a fever....

Mild panic set in as I tried to gather my thoughts, thermometers, and fever relief medications....

It has been over a year since I went through all this with the pharmacists...

before transplant she could have advil and not tylenol, now she can have tylenol and not advil...Right? Or was it the other way around?  Crap 

And what dose does she get again? Crap, crap!

How high does her fever have to be before I call the on-call?  Damn it! I can't remember anymore...

And it is the Friday afternoon before a long weekend, pediatrician is gone, her nurses are gone, and the little transplant duotang that I once carried around EVERYWHERE in anticipation of this day, has slowly over the year become buried somewhere in my desk under a pile of bills and other paperwork.  Crap, Crap, Crap!

I placed a call anyhow, and because it was the Friday afternoon, of course, they were incredibly busy and took quite a long time to return my call.  

In the meantime, I found my trusty duotang, gave her the correct dosage of the correct medication (by the way, I had it right initially!).  Alexa was soundly sleeping and I was gaining back the confidence in my ability to handle this.  After all, it was JUST a fever!

But when you have a transplant child, a fever is never "just a fever".

Our doctor called us back, hears the temperature and tells us to get our behinds to the ER....Really? 

So off to the ER we went, putting an end to our 13 month streak.  

I do have to say though, as far as ER visits go, this once was one of the better ones.  Successful IV after one attempt and one more successful stick for blood( it was too much to get from the IV). 

They ran numerous blood test and cultures.  Alexa got a round of IV fluids, they started her on antibiotics in case it was bacterial and not a viral infection, and 3.25 hours later, we were discharged.

With continued tylenol and the antibiotics, she bounced back quite quickly.  The next day, apart from less energy than normal and a rash that she developed on her torso, she was doing well.  

Her throat swab came back positive for a bacterial infection, so she will continue her course of antibiotics for the full 10 days.  Tomorrow is the first day of school here.  She will be absent tomorrow.  The doctors want to make sure she has had enough days of antibiotics under her to ensure she is not passing the infection to the other kids.  

This makes me sadder than it does her!  

I guess our "first day of grade 1" pictures will have to wait until Wednesday.

A Year Later

It is really hard to put into words what we, well what I was feeling a year ago today.  At this time, my wonderfully generous husband was just being taken to the OR and I was running back through the halls of two hospitals, to get back to Alexa's room and hand her off to her surgeons.  Apart from the day of her diagnosis, it was the worst moment of my life.  

But here we are a year later, and what a year it has been!

There are so many people to be thankful for--but first and foremost, none of this year would have been possible without Alexa's father, who selflessly put his health aside for his daughter, who unwaivered at all when we agreed that the wait for "the call" was over, who knew that he was the one meant to give Alexa life for the second time.  And because through it all, he always shrugged off any compliments and said, "I'm her father".  

Secondly, to Alexa's doctors (and nurses) who were given such wisdom and wonderfully delicate hands on this day a year ago.  Because they are the most compassionate people who truly wanted the very best for Alexa.  Because, they truly saw Alexa, a wonderful little girl who's UCD was affecting her more than anyone else could have realized.  Because they believed quality of life was worth the risk to take!  Because they work though my paranoias and PTSD-like symptoms without judgement.  And because they take care of not just Alexa, but our family!  

To all our friends and family, who have been there and offered their support throughout this year!  I am still stunned by the wonderful people who have been put into our lives, and I am grateful for each and everyone of them.

And finally, to my Alexa!  Because In her short years here, Alexa has shown us what is really important in life.  Alexa has taught me what love truly is.  And she is proof of what bravery, strength, and perseverence can overcome.  

I have always hated the cards that Alexa was handed in life, but here we all are a year later, with a newly dealt set of cards.  

Noone knows what the future holds for us, I don't have a inkling as to whether these cards will continue to be as great as they have been.  The statistics say that they most likely will not--that we are bound to have more bumps in our future than we had this year. 

So in the meantime, we are taking advantage of the good days!  In the first year post-transplant, Alexa has:

-taken a road trip to Hershey World and Sesame Place in Pennsylvania

-taken a cruise and snorkelled in the Bahamas

-visited friends and did a whale watch in Boston

-started and graduated kindergarten with a really impressive year

-started dance lessons

-attended summer camp (with mixed reviews!)

We are packing our days!  Filling them up with many exciting "firsts", but more importantly with lots of love and faith!  

Happy Transplantiversary Christian and Alexa!  May this be the first of many, many, many more!

I'm A Big Kid Now....

This month has been BUSY!!! Fun--but incredibly busy!  This is quite obvious by the lack of posts on this blog.

Another reason for the lack of posts is that health wise Alexa has been doing so wonderfully well.  She has a happy liver with pretty great liver enzyme numbers and she is on a nice, steady and relatively low immunosuppressant level.  Tomorrow will mark 11 months!!! What?!? Yes....ELEVEN months since Alexa and Christian went into that OR.  And although, it still feels like it was a lifetime ago, when I look back to that day, I still feel those same emotions as if it was this morning!  Looking forward, we have our one year check-up coming up which has a whole bunch of additional tests, all standard and precautionary tests.  None of them we expect to show us anything out of the ordinary but none the less,  if you would not mind keeping us in your thoughts on July 21, as always we would greatly appreciate it!

Now, onto the fun stuff.  I said we have had a busy month and I meant it.

May started off with a trip to Boston.  We spend the time with our UCD friends and had a blast.  We went on a Boston tour, did a whale watch and some shopping.  It was the perfect long weekend trip!

Shortly after returning from Boston, the classroom and school end of school preparations began.

First, we got a notice informing parents that SK kids would commence having morning recess with the rest of the big kids to prepare them for grade 1 this upcoming September!!! 

What?!?  You are going to release my baby into the wild with the rest of the world? 

Hold on!  Alexa  okay, okay, Mommy is not ready for this!

Like everything else, Alexa showed mommy that she is ready for this.  And out into the world with the big kids she went!

Then this happened:

Alexa lost her first tooth and got her first visit from the tooth fairy.  Goodbye perfect little teeth, make room for those adult ones please!

And we had a couple end of year celebrations:

We had Alexa's Spring concert in May.  "I CAN DO IT" was the theme!

 

Alexa had her last ballet class for the season and so she had a parents day showcase:

 

And today we finished off the end of year celebrations with  SK graduation celebrations!

There are not enough words to adequately give thanks to Alexa's wonderful teachers who have helped her so much along the year.  They have been tremendously supportive and she has thrived under their guidance.

This child could not make me more proud.  She shows me over and over again, just how brave, resilient, and strong she is.  I am thankful that the Lord blessed her with enough strength to face every obstacle that has been thrown her way and then some leftover for mommy! My strength truly does come from seeing her persevere through it all.

And finally we have officially begun the countdown to the big SIX!  There are just 3 more sleeps until Alexa's birthday!  

Yep--there you have it!  She really is a big kid now!

Make-A-Wish Reveal

Many know that Alexa was granted approval for a wish from the wonderful people at Make-A-Wish Foundation.  This is an amazing charity that grants a wish to children with serious, life long and often life threatening medical conditions.

A couple weeks ago her wish grantors came to our house to get to know Alexa.  I have to say, our wish grantors are awesome.  They brought her a Barbie, some movies and a board game. 

Alexa's Make-A-Wish Barbie

But the best part of their visit was that they stayed getting to know her and playing with her for about 3 hours!   They played Barbies, had a picnic and a tea party, played dress up, and coloured some pictures.  They really wanted to find out what she liked, what her favourite things were, what her greatest wish would be.

At the end of the night, Alexa had the following three wishes:

1. To have ice cream with Elsa in DisneyWorld
2. To swim with the turtles in the Galapagos Islands
3. To have ice cream with Elsa on a Disney Cruise

All pretty awesome wishes if you ask me!

I got the call last week that one of the wishes was approved and tonight was the big reveal:

(fast forward to 1:20 mark for the big surprise)

 

 

 

So there you have it! Looks like in the next couple of months, we will be going to Disney World!!!

 

 

Our Make-A-Wish grantors came in with a huge box from Princess Elsa! 

 

   

 

 

 

 

Elsa bought gave Alexa two matching bracelets.  As the note states, we are to bring them to Disney World with us so that Alexa can give back one of the friendship bracelets to Elsa.

 

                                     

Of course, Elsa was super generous and gave Alexa tons of other presents:

 

And for our final surprise we were added to the pin trading club:

 

 

 

And we have our first Disney mission:  

To build a pin necklace full of only Frozen themed pins! 

 



beadonor.ca

 

 

 

Every day, there are two things that I wish for.....

 

The first is that we are one step closer to a finding a cure for citrullinemia.....

 

And if today cannot be that day, the second wish is that those clinging to life; waiting for their perfect organ, receive their call.  That today is THEIR day.....

 

The day when the desperation turns into hope!

 

But that won't happen unless we step up (a little more...)

 

Confession Time:  Prior to Alexa being born, I was not a registered donor.  Don't get me wrong; I have always thought organ donation was a positive thing and wanted nothing more than to donate my organs when I no longer needed them.  I even checked off the option when renewing my driver's license.  But that was not enough.  I never actually sat down and registered online.  It's not that I did not want to; I just never found the time to sit down and do it.

 

And then.....well you all know what happened next.  Life happened and threw me a curve ball...

I became a mother to a child with a serious medical condition and in doing so, I learned amongst many other things, to be a little less self-absorbed.

 

So I sat down and did it--registered online to donate my organs at

beadonor.ca 

 

If you are a reader from United States, you can go to www.organdonor.gov/ to look up your state registry.

 

2 minutes is all it takes! TWO MINUTES!!

 

Seriously, all it takes is your health card and 2 minutes on a computer and you can save up to 8 lives! And enhance the lives of 75 more!  We don't think it is asking too much...do you?

 

 

 





The month of April is dedicated to raising awareness for organ and tissue donation.  Last year, you might recall that some of my family and friends wore green and blue to help raise awareness and encourage people to register consent to become organ donors. 

 

 

 

This year, we thought we would go a step further. 

 

I live in a wonderful community of very supportive neighbours.  Together we have gotten together to paint Cornell Blue&Green on April 11, 2014.  We have full support from our local schools (including Alexa's!!!) and we would love to have your support too!

 

It is super easy; all you have to do is send your kids to school wearing blue and green! Go to work wearing blue and green! Spread some awareness and encourage people to become organ donors! Upload your pictures to facebook, twitter, instagram...And everywhere else! Spread the word and get the message out there. 

 

This is our event page. If you wouldn't mind, please go the event page and JOIN it.  It is a public event, so please feel free to share. 

 

https://www.facebook.com/profile.php?id=462835693816055

 

Bringing up the subject of organ donation with your family may be difficult. But do it now, do it when you can so that if there ever comes a time when you cannot, your wishes are known.

 

 

 

 

 



8 Months and Going Strong

It has been over a month since I have updated and to be honest, I don't have a lot to say.  But tomorrow is 8 months since the transplant and I could not let that go without acknowledging it.

We have been busy but as far as Alexa's health, not a whole lot going on right now.

We are down to monthly draws and for the third straight month Alexa's liver labs are bang on.  Right in the middle of normal.  Just where we like them.

We have clinic every 2 months at the moment.  Our metabolic appointments always brought on a ton of anxiety.  Fortunately for us, this does not hold true for our liver clinics.  It is just a different atmosphere. 
It is no secret that I absolutely adore our doctor, and at every visit I am reminded of why.  I never, ever have felt rushed with him.  He comes in, has a seat and is really interested in all that Alexa is up to--medically and personally.  He wants to hear about our trips, her favourite restaurants, her dance classes.  He listens to all our concerns, takes each one seriously and formulates a plan for them all.

The one concern that I have had is in regards to Alexa's hair. We have noticed her hair thinning out and falling out a lot more than normal.  At this point it is not so common. Immediately and up to 2-3 months post transplant it is normal for children to get small bald patches.  It is a combination of the stress of the surgery and all the medications.  Alexa did experience this. 
But this is different--they are not bald patches; but her hair is definitely more fragile and she is losing way more than is normal.  Dr. A took a look and it is not as bad a I thought; however, seeing as it is not common at this late in the game, he ordered a bunch of extra labs for next month.  There are a couple different reasons we are looking at.  Deficiencies in Arginine and zinc are possible.  Her prograf could also be the culprit.  We are going to monitor her for a couple of months and if her labs return normal, we will be referred to a dermatologist if there is no improvement.

We had an ultrasound as well and the doctors did a happy dance upon reading the reports that her ascites is completely reversed.  Well really I could have told them that and they knew it too.  Clinically she has not looked like she had any water build up at all for months.  But last ultrasound did show that there was still some water retention.    I know this bothered her doctor some, so he was quite happy for the reports to finally match up with what he was seeing. 

All in all, she had great labs, great ultrasound, appropriate height and weight gain! We can deal with a little hair loss....

It is hard to believe that just 8 short months ago, this is where we were....

 

 

The moments right before I had to leave my darling angel in the hands of her surgeons.

 

      

 

Who would have believed then, that 8 months later, this is where we would be:

 

 

 

 Sailing around the Bahamas!

 



A Valentine and Birthday Celebration

This is a post that I have been excited to write, yet nervous also so I refused to jump the gun.

If you remember back this time last year, you might see why I was a little bit anxious!

Last year, Alexa got sick just after completing all her Valentines Day cards....
She missed out on handing them out to her classmates....
She got a call for a liver--That liver had to be turned down due to her fever and was gifted to another child.....
She was admitted to the ward of SickKids on Feb 14th--her big brother's birthday....

It was a rough week for us all.....

So this week when she started sneezing and her little nose started running....well you can imagine what was going through my mind.  We are so close to making it a year without a sick hospitalization....so close...yet...one can never get too secure with these things....

We continued on with life and started making Valentines for all her friends.  Alexa put a lot of effort into making them, carefully selecting each card and stickers for the intended recipient. She is super excited to hand them out.

Meanwhile, in the back of my mind, I keep thinking where we were a year ago.....

We had labs on Monday and I was not very hopefully for the wonderful set of LFT's that were reported in January.

But......

Her team called me back on Tuesday morning and shocked me when they told me that her LFT's were bang on....almost exactly what they were in January.....two months in a row in a very comfortable, normal and stable range.

Turns out, Alexa will be handing out those Valentines to her friends personally this year!

And because of the good news we received, we have some big plans coming up.......

First, we get to go to continue the birthday festivities for Stefano!  We started the celebrations a bit early and went to Fallsview Waterpark in Niagara Falls a couple of weeks ago.  We had a great time. It was a perfect weekend away.

And tonight we are going Medieval Times tonight for a night of dinner and entertainment.

Our little guy is now 14!!!! Yes, that is right....All my friends are in shock that little Stefano is not so little.  He is FOURTEEN! And we are so excited to be celebrating with him this year! A well deserved celebration for both Alexa and Stefano.  This brother and sister combo are quite a twosome to watch out for!

Secondly, we have endured a lot this year and this winter has been rough on everyone.....I decided that we needed a break.
Once the great LFT's came back, our transplant team was very supportive of  my plans and with some of their wonderful recommendations, the plan finally came into place earlier this week.

On February 23, Alexa and I are flying off to Miami where we will spend a day before embarking on a CRUISE to the Bahamas!!!  Yep, you read that right....we are finally getting to go on a cruise.

I have had to do a lot of back and forth with our team and a travel clinic to ensure that we have all our ducks in a row.  The clinic was very well prepared and called me prior to our appointment, so that I could have all the answers from the transplant team when we went to visit with them.  And it was a very good thing that we did this.  There were some precautionary medications and immunizations that the travel clinic suggested but after speaking with our team, we realized they were not appropriate for Alexa to take because of the immunosuppression.   There were some other very valuable things that I learned by going to the travel clinic and am so glad our team suggested it!  I will be going there again in the future, that is for sure.  If you have a liver kid and you are interested in more details, contact me and I would be more than happy to share what we learned.  They are great reminders for everyone in general but especially if you are immunosuppressed.

In the meantime, we have one week to get things going!

There was a time that I honestly was not sure that a trip like this would be in Alexa's future.  And it is only a 4 day Bahamas cruise (not incredibly risky!), but it is a start! And I think it is such a well deserved start!

Slowly but surely, all our dreams for Alexa are being realized.