Low Muscle Tone??

I know, I know...This is the second dance video of Alexa this week.  Yes! I am THAT mom!

But bare with me; It is the last week of classes before breaking for the Holidays so teachers were keen on showing parents a sneak peek of what the girls have been working on for the big recital in June.

Almost 6 months ago, Alexa had her 1 year post transplant check up.  Among many, many tests was a physio exam to quantify how her gross motor skills were in comparison to the pre-transplant numbers.

Happily, all gross motor skills were excellent--Right on track for her age!

However, the physiotherapist spoke to us a bit about Alexa's muscle tone.  It is quite low--I guess 5 years of extremely restricted quantities of protein will do that to your muscles.  It makes sense I guess.  Anyhow, the physiotherapist gave us some exercises to work on and was pleased that she would be enrolled in dance classes to strengthen up a bit.

Alexa started dancing 3 times a week in September.  For many of the students this is their second or third year there, so Alexa had a little catching up to do. She is a little behind on the moves and some of the skills.

But, boy! This girl tries so hard! And practices so much.  In September, she could barely do a "bridge" on her own.  Three months later and look at how long she holds that bridge:  (at the end of the video)

Low muscle tone!  Take that!

Every day this little girl of mine, gives me yet another reason to be so proud of her.

It's been a crappy week

Alexa is fine! Great in fact!  She is perfectly happy and more importantly healthy.

This is not about her....

Our UCD community has had a rough couple of weeks.  And when one of us feels it, we all feel it. Probably because we have all been there.  In those same shoes.  All too often!  We know that it could have been us.  We know that it still could be us.  And it is scary and frightening and sad and infuriating all at the same time.

In these last couple of weeks, two babies have had to face a second transplant after complications arose from the first one just days prior.  Baby boy is in critical condition as his body adjusts to a new liver (again).  

This afternoon, I read those unfathomable words of condolences on Baby girl's facebook page.  

I did not expect that.  I was shocked.  I was devastated.  I was angry.  In fact, I still am.  All those emotions and more.

Today I was swiftly kicked back to reality.  The reality where no matter how easy Alexa made it seem, transplants are complicated and dangerous.  Where Urea Cycle Disorders do not come without its own set complications. Both are equally risky.  Neither is a choice any parent should have to pick between.  

And yet here we are....

After all is said and done; after all the questioning; after all the tears; all I can do is hold my daughter and count my blessings.

                        

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.

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.

Six Months

Can you believe that tomorrow will mark 6 months since the transplant?

Our world has changed significantly in just 6 short months.  We find ourselves moving further and further away from the UCD world as we knew it. Yet, as we move away from it, there is always some sort of reminder, somthing to ground us and remind us of who we really are and where we came from. The effects of citrullinemia, and for the most part, many of them we still do not know, but they will be with Alexa her whole life.  The trauma and anxiety that I learned to carry around on my shoulders will never be completely gone.  They may just disappear for a good long while.

When Alexa had citrullinemia it was not uncommon for me to have the same repeated nightmare--that Alexa's laboratory results would come back showing super high levels of ammonia.  I would wake up sweating and tears smeared across my face and pillow.  I recall clearly the last one that I had pre-transplant.  In fact, it was the very night before the transplant.  I had a dream that her ammonia was so high that the doctors had to call off the transplant.  I woke up in a panic and decided to forgo sleeping that night.  

I had not had one of those type of dreams until this past Sunday night.  I woke up remembering that her reported LFT's were in the 2000's.  Woke up in a panic and realized that although it may be fewer and farther now, the ingrained fear is still there.  That is what 5 years of UCD life did to me.  

But we are working at getting better.  We are working on healing those wounds. We are working at getting this new life of ours to usher out those deep fears that citrullinemai taught us.  And I think we are doing a pretty good job at it.

Alexa's last set of labs came back with wonderful news.  To quote her nurse, "her LFT's are beautiful". And yes they were indeed!  For all my liver mommas out there who NEED to know numbers, AST-34, ALT-31!  Take that citrullinemia! NORMAL NUMBERS FOR THE FIRST TIME EVER!  So good that we are now down to monthly draws!  

Metabolic wise, I have been tracking her citrulline and arginine.  Her arginine is sitting very comfortably in normal range and her citrulline in the low 500's.  If you recall, pre transplant they were in the 3500's, so seeing 500 is nice.  It is ok, but not quite normal yet.  But that's ok, I am determined to get it there. May take my lifetime to do it, but one day, one day, it WILL fall in the normal range.

And in the sweet 6 months that I have been a liver mom, I have learned some very valuable lessons.  I learned that there is a difference between living with citrullinemia and LIVING.  There is a whole world of places to see, things to try, adventures to go on.  We have been given a second chance. And so there is not a minute to waste.  I will endeavour to do all the things that we could not or were too afraid to try when we were living with citrullinemia. 

In this new world of LIVING, we go on spontaneous road trips to Hershey World.  

We go skating and won't worry about the exposure to cold, or the amount of calories that are being used up without being replaced.

And we will continue to skate, because, after all, we are CANADIAN!!!

In this new world, Alexa started taking ballet and acro classes in preparation for the dance school she will be joining in September.

And in this new world, Alexa is going to try gymnastics too!

Today, she asked if she could go rock climbing.  Well of course you can my darling girl!

This world is also taking us down south on a little Boston adventure this May, and we could not be more excited about it! One long weekend in Boston, two transplanted kids to cure a UCD, walking along cape cod, whale watching and plenty of good times to be had for sure.

Alexa has also asked to go back to Mexico and Cuba and maybe even try the Portugal trip that never happened last year.  Yes, my girl. We will do all of those too.  Maybe not all at once, but all in good time.

This little liver world of ours as we have come to know it, has been extremely good to us.  In fact, it has BLESSED US.