Making Time Stand Still

Well I definitely was not in my happy place with my last post.  I needed a couple of days, a week even to get out of my slump.... 
Thankfully for all, the slump is gone and this post will have a much happier tone.

Alexa has a couple more days as a 6 year old.  Her 7th birthday is this Saturday.  And we have quite a busy couple of days ahead of us.  As of today, regular dance classes have ended for the year! (Hooray! Oops--did I say that out loud?)  All that is left is one rehearsal and then this weekend she will be performing in 3 shows!!  Somehow, we will fit in some birthday celebrations in there. 

It is crazy to think that in a couple of days I will be the mother of a 7 year old.  Where did the time go?  How did it go by so fast?  In the blink of an eye, my baby is not a baby, she is not a toddler, and she is not a preschooler, she is a beautiful little girl!  And growing into such a wonderfully loving child!

Just in case I needed reminding of how big my girl is getting, today we received our dance pictures that we took a couple weeks ago...

I wish I could have time stay still... just a bit. 

Time is flying by and I need to take a minute to stop and soak up all these moments--all the snuggles that I know are nearing an end, all the hugs and kisses that will soon be less and less.  How do I keep all these moments--the moments of laughter, the moments of learning something new, the moments of bonding, the moments of appreciation, the moments that fill my heart with joy--how do I keep them all in the very tip of my memory?

I guess this post was more bittersweet than it was happy.... 

Enough Already

I'm in a bit of a snippy kind of mood and those never lead to good posts, so a little unsure of how this will go.  Here goes nothing I guess.

I've had enough....

Now, let me start off by saying, Alexa is good, more than good really.  In fact, we had bloodwork this morning, lots of it.  Both liver and metabolic, which required being up at 5am to travel 1 hour for a 5 minute draw, instead of our local lab which is a 5 minute drive away. Liver labs have already been reported and they are absolutely wonderful.  I do not expect any surprises from the metabolic set, I think it is safe to say, her health is doing great.

Now, with all that, I am sure the rest of today's thoughts will make me seem, uhhhh, how do I put it? selfish, unappreciative, whiny, etc, etc.  Yes, today I am all of the above!

But sometimes, you feel how you feel and I think that's okay.  I have not forgotten how blessed we are.  I know that well.  But today I am tired...and.I am maybe just over it!

So, if you are not into hearing my whiny vent, you may want to stop reading at this point.  No offense taken, really.  I promise!

Alexa is doing really well academically.  Her latest report card was quite good, but I am finding that she does need to work harder than her peers to understand certain concepts and she is having some difficulty focusing, especially when her prograf levels(immunosuppression drug) are running slightly higher.  Attention issues was a huge concern pre-Ravicti as well as pre-transplant, and while it is much improved since transplant, there are still some difficulties.  This is not uncommon for kids with citrullinemia and also not an uncommon side effect of Prograf.  For some time this upset me a lot, but it is what it is and we will deal with it.

Last week, Alexa had a regular vision check up and to our surprise, we discovered that Alexa is quite farsighted, with one eye weaker than the other.  She requires glasses full time with quite a strong prescription.  

And I am not sure why, but this is the one that might have been the straw that broke the camels back so to speak.  

And it's not because she needs glasses; in fact we went to pick out a pair today and she looks so adorably mature and grown up.  It is not the actual glasses that I have a problem with.

My problems lie in the fact that it is just ONE MORE THING.  

One more specialist appointment among all the others to add to the mix and try to juggle into my new job and new schedule.  And have I mentioned that I am tired. 

Have we not dealt with enough? For once, could it just not be someone else? I mean, we already have the frequent blood draws, we have liver clinic, we have metabolic clinic, we have pediatirican apoontments, we will probably add in psychology for the attention.  Really? Do we have to add opthalmology?? Could this one not have been directed somewhere else? Could Alexa not have been spared just this once?

I know she has dealt with so much more and this is really nothing.  I know I am being petty, but in all fairness, I did preface my vent.  Fair warning was given....

So I guess, I am just over it. 

Enough already!

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!