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.
May you have many many fantastic well deserved adventures!! <3
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