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.

Clearing Some Things Up....

In one of my most recent posts, I  inadvertently said something that hurt some people.  The same people who are very near and dear to me, that I care for greatly, and who have supported me through all the ups and downs.  Offending them was the last intention I had when I said that I have learned that "there is a difference between living with citrullinemia and living".
My error was that I failed to elaborate.  So let me correct that error here and now.

For the 5 years that Alexa had citrullinemia, I LET citrullinemia run our lives.  The fear and anxiety of managing citrullinemia took over our lives and I LET it be the deciding factor in everything we did. 

Did you know that there were times, after I put Alexa to bed, I would retreat to my own bedroom, sit on the bed and stare at her monitor with a knot in my stomach waiting for what would happen next.  If she slept too easily, my anxiety would lead me to think the worst.  If she was restless, my anxiety would lead me to those same bad thoughts.  I couldn't eat, I couldn't sleep.  All I could do was sit, stare at the monitor and cry. 
Did you know that not one day went by last year where I would go to pick up Alexa from school without that same knot in my stomach? Waiting to breathe a sigh of relief upon hearing whether she had a good or bad day. A bad day meant that I would have to be super alert for any signs of high ammonia.  A bad day meant that I was more likely than not going to the ER just to be safe. 
That anxiety was paralyzing and ruling our lives.

Did you know that I have wanted to put Alexa in ballet and dance since she was 2 or 3?  But LET her diagnosis deter me from it.  I was too afraid of her catching illnesses to enroll her. 
Did you know that before Alexa was born, I had plans to take her to visit family in Ecuador when I was on my maternity leave?  But I let the fear of being in country where they have more than likely not ever heard of citrullinemia stop us from visiting.
Did you know that my fear kept us from taking part in a family vacation to Cuba because the resort was a 2 hour bus ride from the airport? And a 4 hour (at best) plane ride away from our hospital...
Did you know that we have always wanted to take Alexa on a cruise....but of course, there was no way I was going to have that happen...what if she got sick on one of our "at sea" days, what if the hospitals in one of those ports did not have her emergency medication on stock?  So guess what, we put it off.  Fear of the what if's made me put it off time and time again.

I could easily have fallen back into the same trap after transplant.  Go back to that place where the fear of catching an illness forced me to keep her away from all those extra curricular activities. I could have easily let transplant take over the new excuse for not going out there to do all the things we have wanted to do and have Alexa experience all that I want her to experience.  And to be honest, there were a couple of times where I almost did go back to that place.  You know--THAT place where I try to keep her in a bubble to protect her from all the germs, viruses and illnesses out there.  But out there is where the world is.  Out there is where we have to live. 

And this is where things changed for us.  Our transplant team refuses to let us go back there.  When I asked our transplant team what they thought of me taking Alexa to Pennsylvania last October.  Their response was "Of course!! Why would you think it would not be okay???"  That is their response to everything! When I called and asked about dance and gymnastics...I got the same response.  They know we are scared but they refuse to let that fear stop us.

So you see, it was not the UCD or citrullinemia itself.  There are many, many families I know who have a child with a UCD or are UCD adults themselves.  They made it on that cruise, they have been to Hawaii, they do all those extra curricular activities like dance, track&field, soccer.  They learned what we did not--How to manage both living and citrullinemia in equal parts.  How not to let it take over all aspects of our lives.

Citrullinemia is a huge, undeniable part of our lives, of Alexa's life.  But it is not ALL of her.  She is made up of so much more.  And now that we know that we don't have to fear everything, now that I can breath a little easier, it is my job to show her all I can to help her decide who and what she will be.  It is my job as her parent not to fall back to that place where fear and anxiety dictate all again.
I have to teach her now that the way WE were living was not taking advantage of everything we had at our fingertips.
Citrullinemia wasn't stopping us....my fear was!

Proud Mama Moment

Alexa's class has been sending books for the kids to read each week at home.  She has been working very hard and doing really well.  We are so super proud of our little girl.

Alexa reading "The Baby Owls"

I particularly like the part where she is reading without actually looking at the page.  Hahaha!  Obviously she has remembered some of it from reading it at school, but all the same, she is remembering her sight words and trying to pronounce words that she does not remember.

Her academics, and keeping up at school, is something that I stress about. A LOT....Probably too much.  So when I see her enjoying her school activities and doing so well, it makes for one super proud mama moment!

Happy 6 months!

Alexa and I made a cake to celebrate our 6 month anniversary of her second birthday, her second chance at life.

It was my very first time using fondant. I did not even have the "proper" instruments but with a  little bit of YouTube tutorials and lots of love, I think it came out perfectly.

Here you have it:

Happy 6 months to Alexa and her daddy. Without him, this day would not be possible.

And thank you Lord for keeping them happy and healthy these last 6 months!  We are looking forward to a lifetime of many more happy and healthy anniversaries.