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.... 

No News Is Good News...

Or at least in our house, that seems to be the case.

In the week that we have been home, we have had two sets of blood work done(Friday and today) to closely monitor all her liver function numbers.  They look great.  On Friday, the AST was 38 (completely normal) and her ALT was 81, almost down in the normal range--I am told this one takes a bit longer to come down.
Both sets resulted in no dosing changes for her medicine.  That is good--that means that they have figured out the exact dosing required for her Tacrolimus(FK/Prograf) which prevents rejection.
And we do not have to go back for blood work until next Tuesday!  Must mean that they think she is pretty stable.
I must say,  I love the ease of blood work when having a PICC Line--Seriously--no tears, no stressing about whether they will find the vein on the first try.  It is so fast and pain free.  If it weren't for the fact that we cannot get it wet at all, I think I would keep it forever!

Alexa is slowly being weaned off of some of the other medications that she gets.  Her Prednisolone dose which is another steroid to prevent rejection is being tapered down every 2 weeks until we have reached 3 months post-transplant.
Ganciclovir, which is the intravenous medication that is administered by our home care nurse has gone from 2 times per day to once per day, again for about 3 months post-transplant.  This medicine helps prevent some viruses that are pretty bad for immunosuppressed people.
I will be so very happy when she no longer needs these medications.  They are harsh on the body and have some pretty serious side effects with higher doses.  I hate that she needs them, but what can I do, she absolutely needs them to remain infection free and prevent rejection all at the same time.
One of the side effects that I knew about but didn't really envision was hair loss.  The medication can temporarily cause small patches of hair loss.  I know it is just cosmetic and I know that it is only temporary and maybe I am being silly about it, but I still feel like crying when I see it. There are just some things, that no matter how much you know in advance, you just can't be prepared to see--This for me is one of them.   In the meantime, there is a lot of ponytails going on in this house to cover it up.

As for food, we are slowly making some progress.  Chocolate milk, although she is not interested in drinking it on her own, she will drink it at breakfast and dinner.  She may not be happy about it but she drinks it.
She loves cheese and everything that cheese is on!

Eating some good old Kraft Dinner--This meal never disappoints

Tim Horton's is quite happy and will sure to make a nice profit off of Alexa's favourite breakfast item--Bagels with cream cheese!  Don't mess with her when she is eating one of those!

She also had a burger for the first time--I wouldn't say she loved it, but she did eat the portion that we set for her--small victories!

Today is Chris' Birthday.  Alexa and I prepared a very rich meat and cheesy lasagna.  She has helped me before, but this time was different.  She was so happy to sneak the shredded cheese and finally I did not have to tell her that she couldn't.  She loved every minute of it!  And I in turn, loved watching how happy she was!

Before I sign off, I would like to wish Christian the very happiest of Birthdays!  This man has shown again and again how much he loves his family and that he would do ANYTHING for his children!  Chris, you are a wonderful father and husband and deserve only the very best to come your way.  Your children lucked out in getting a true hero for a father and no one is more proud of you than I am.

HAPPY BIRTHDAY CHRISTIAN!!!

Birthday Festivities Continued....

I have to admit, I was a bit nervous about Alexa's Birthday weekend away.  You see last year we went to Great Wold Lodge and Alexa loved it.  She wanted everything to be the same...EVERYTHING....same people, same place.
However, I had decided to change it up a bit and try Niagara Fallsview Indoor Waterpark, partly because we had seen it last year and thought it looked nice, and partly because we got a much better package than at GWL.  As the time got closer, and Alexa spoke about it more and more, I started worrying that I had made the wrong choice.    I needed this to be a great weekend for Alexa.  Her summer vacation will literally be cut down to about 2 1/2 weeks, so I want to jam pack those days with nothing but fun.   When she found out we were going to "the new place|, she was NOT thrilled.  Oh boy...

Well, turns out I was worried for nothing!  The water park not only met but exceeded our expectations.  We had an amazing, super, wonderful time.  It was all I could ask for and more!  

And someone I know was super excited once she saw the how great the park was!

I love watching Alexa experience something new and watching the joy on her face as she ran up and slid down the water slides for the first time was incredible.  So incredible, that I raced up and down with her as if I was 5 again--she is a lot faster than me and I tired out a lot quicker than she did!  I guess that really isn't surprising though!

We went on those slides A LOT!

 Determined to go down as many times as her little legs would take her up those stairs!

And we played in the wave pool a lot!  I have to say those waves are a lot stronger than I thought!

Loving on her big cousin!

What a great big brother!

 Daddy always makes sure these ones are having fun!

This trio was out cold on Saturday night!  Slept in till 9am on Sunday morning, which was a special treat for mommy and daddy!

Our package also included some non-water related activites.......

We saw Happy Feet and Adventures to the Mysterious Island in 4D

Got to try Bumper cars......

A bit of Mini-Put.....

Rode in  SWAT car trying to catch criminals.....Sorry--we were too busy shooting those criminals to take any photos!

And a ride in the Pink Panther Balloon overlooking Niagara!

We also walked along Clifton Hill to see all the wacky things and for some more photo ops!

It was a great weekend!  I really could not have asked for anything more!  And Alexa is already talking about next time she goes there!

And then she turned 5

It is always important for me to make the most of Alexa's birthdays.  As a parent, I want for her to have the best time imaginable.  I want her to enjoy every second of her day!(or weekend as it seems)  This year, for obvious reasons, it was even more important that her day be as special as can be.


 
Alexa was so excited from the moment she woke up.  She went to her dresser and picked out the princess dress that she bought with the grandmother the night before.  She was so surprised to see the house already decorated.

She had a wonderful day at school.  Since food options are no longer allowed, we bought some stamps and stickers for her to hand out to her classmates.  Her classmates sang to her and she blew out candles, making a wish.  Her teachers reported that it was such a fun time for all.  

I had said that Alexa has a certain  unexplained way of captivating people, and yesterday I saw just how true that was.   Her teachers--all 3 of them gave Alexa a special little present.  Each and every one of the   presents had a significant meaning to their relationship with Alexa.  One of them in particular was quite special as it was from her teacher who will be sharing her knowledge at another school next year. It became apparent to me just how very close the two of them have become and just how greatly she will be missed.  I am hoping we can have Alexa and and her special Ms. D keep in touch--I think Alexa would enjoy that.

I picked her up and she was so excited to get on with the rest of her birthday festivities.

Awhile ago, I asked Alexa what she preferred to do for her birthday.  She could pick a big party with all her family and friends or we could go to Niagara Falls and stay at a hotel with a themed indoor water park.  She chose the later.  She was very adamant--has not wavered at all and could not be more excited to go.  She has been talking about it for months.  She wanted to take her mommy, daddy, big brother Stefano and big cousin Giselle.  So that is what she got. (more about our weekend away on a future post)

However, on Thursday we did have a small celebration to get her to open her presents and blow out a cake.
Here are a couple of my favourite pictures of the night!

Princess Cake

She had been eyeing this dress for weeks

So much concentration!

I think she likes it!

Very excited about her new Ariel dress

She was showered with lots of attention, great presents and good food!  

The night before your 5th

My Darling Little Girl,

It is the night before your 5th Birthday.

It is your last day as a four year old---Tomorrow marks the beginning of 5!

All the presents are wrapped, the decorations are set, there is  anticipation in the air waiting for you to wake up tomorrow and revel in all that is YOUR day.

So I sit here with a moment to look back at the last 5 years.

June is always a VERY emotional month for me. First comes your birthday and I am overjoyed, elated really at having you celebrate yet another year, another milestone.  It reminds me of the happiest day of my life.  

But it also reminds me of  THAT day,  June 29th!  The anniversary of your diagnosis.
The day that brings all those memories to the forefront--All year I try hard to dismiss them--to hide them away in the back of my head. (mind you, with little success) And this one day brings it all right back to the front!  On this day I can remember EVERY SINGLE DETAIL!--All the conversations we had, all the smells of the hospital, the taste of the food we forced ourselves to swallow--EVERYTHING with so much clarity.  It is as if it was yesterday.  The outlook seemed very bad those days.  They told us not to look up citrullinemia on google--we would be afraid of what we read.  True--We did and we were oh so very afraid!

But they also told us, that you were such a strong girl--you fought so hard--just ask those PICU nurses.
You were so brave-- you gave mommy a smile even though you were in so much pain!
You responded so well, amazing all the nurses,  when I sang you our favourite Robert Munsch lullaby.

You amazed them then and continued to amaze us all.

You have become our teacher!  Taught us to be more patient, to appreciate all that life has to offer, to not sweat the small things.  You taught us that life is too short for all the other nonsense.  It is because of you that I am a better person.

You have the sweetest and most loving heart--always trying to make your mommy and papi so proud of you---And we are--Believe me--We could not be more proud of you!

You have an amazing spirit--When you have had the hardest of days, you are still smiling.

You have a way of captivating everyone with your laugh, your giggles, your personality.





So I sit here, the night before your 5th and I want you to know that you have made me the proudest and happiest mother in the world.  I also think I just may be the luckiest to have been blessed watching you grow over the years into this beautiful little girl:

"I'll love your forever, 

I'll like you for always, 

As long as I'm living, 

my baby you'll be"

Love you forever and always, to the moon and back!

Your mommy!