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.