Packing Up....

After yesterdays all clear, I came home and had to finish packing Alexa's stuff.  I had started but thought that I might be jinxing myself so I only packed the easy stuff like pajamas until we got the go ahead.   

I got stuck on the "other stuff"--

What do I take to comfort a little girl whose world is about to be completely turned upside down--For a second time?  

What do I take to remind her off all her family and friends who love her so much?  

What do I take to remind her of her home, room, bed, all her stuffed animals, and toys that are waiting for her prompt return?

And what do I take to entertain her on those days when she has just about had enough of the medical world?  After all, there is only so much iPad and Disney DVD's a girl can stand.

And have it all fit in one suitcase--I know we are getting a private room and all, but it is not exactly a penthouse suite--Space is at a minimum!

This seemed like an almost daunting task--perhaps that is also why I held off on it for so long(that and my superstitions!). So, I consulted with the Transplant Child Life Specialist, who thought that I should ask Alexa what she would like and have her help in the packing process.....

This is what we came up with....

Alexa's B-Strong Bear was gifted to her by one of her teachers, Ms. G. It has a very special meaning to us and I am sure will give her strength when she is feeling down and courage when she is scared. 

Our "perfect liver" given to Alexa and Chris by one of our dear friends. 

An assortment of sticker and activity books given by Alexa's teachers and her aunt. They know her well and managed to find all her favourites.

Alexa's Ariel dress--cause there hasn't been even one day since she got it that she has not put it on. I am hoping that once she is feeling well enough to start moving, she will put this dress on and it will give her the motivation she needs to take that one extra step. She is the happiest when she is strutting her stuff in this princess dress.  

Her favourite bed time pals--Minnie Mouse, pink teddy, and her new favourite blanket. She sleeps with these every night and always brings them on every trip we go on.

Our Organ Awareness and Rare Disease Awareness collages that I sent to be made into posters. They are pictures of all her friends and family near and far who always support her. My hope is have these up in her room to remind her how loved she is. Seeing all those familiar faces is sure to bring lots of smiles. 

This beautiful rosary is so very special to us. It was given to Alexa by yet another one of her teachers. It was blessed a couple of years ago back him where Mrs. D grew up. We could not go to the hospital without it. I am so happy that I can have it in my hands while I pray for my little girl, my husband and all her doctors. 

So this is it.....all packed to go to our home away from home.  

Anything you can think of that I have missed?  I have one more day, let me know quick....

Cleared for Transplant

I was a bit nervous about today's final pre-transplant check-up--who am I kidding, I was a lot nervous judging by the nightmares I was having last night in which I take her in to be seen and she has a high fever and won't stop throwing up.....

I am super thrilled to say that our appointment went nothing like the dream.  Alexa's ammonia was 23! And physical examination showed a clear and clean system!

 We were given the clearance and told to report Wednesday morning for admittance.  It is a bit earlier than normal, but due to her complicated metabolic condition, they do not want any hiccups on Thursday. 

I met some new to us doctors and was reminded again about how great and caring our transplant team is. 

We were approached about many different clinical trials and research going on. Because I know that transplant is only possible for us right now because of all the others previous to us who said yes to trials, I said yes too. It is the only way to advance the knowledge so that those after us stand a chance too. 

Please know that i firmly believe in participating in studies for the advancement of medicine BUT I would never blindly subject Alexa to any research if there was any chance of it causing her care to be lowered or if I though for a second she might experience any amount of discomfort as a result of it. 

That being said, these are the trials that Alexa will be a part of:

1) A transplant centre biobank registry which will collect and store biological samples in an attempt to identify the genes that influence the outcomes after transplantation. It is the hope that it will help in finding ways to improve treatment, develop new medicines, diminish side effects, and combat rejection. 

2)A trial of tacrolimus dosing after transplantation. Tacrolimus is a commonly used medication after transplant to lower the activity of the immune system. This study aims to find out if they can reach the desired levels of the drug sooner by adjusting the dose based on the kind of gene one has, versus dosing based on weight of the patient. 

3) They have asked and I have given permission for them to video record Alexa's surgery to teach medical students at University of Toronto.  

I can even watch it they said---uhhhhh not sure if I am ready for that. Maybe in a couple of years. 

These are quite brief descriptions but if anyone has any questions about them or interested in more details, please feel free to email me. I am more than happy to discuss them. 

Once again my sweet little girl will help others. With each day that passes she amazes me more and more. 

As an aside, both my computers went kaput at the same time. I had many pictures of our 3 weeks of summer that I would like to share. If can get access to a computer or my iPad memory card adaptor comes in soon, I will post them.  And I discovered that I really hate blogging from my phone! 

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!

Random Thoughts

If you are not an HGTV nerd like me, you may not love Brian Baeumler (HGTV host) as much as I do.  However, I happen to think he is fabulous and earlier this week I received an email which gave me reason to love him even more!
Bryan Baeumler and his wife Sarah have created the Baeumler Family Foundation (BFF) with the intention of helping children and families in need.  The Baeumler Family Foundation is a charitable organization focused on providing renovations for children and families that need accessibility or improvements to their homes, and could not otherwise afford the necessary modifications.  The BFF strives to help families better the quality of life for their children.
They are encouraging applications from health care workers on behalf of patients, or from the families themselves. More information, including the application form can be found at http://baeumler.ca/family-foundation/.  If you know anyone at all who could benefit from this generosity, please forward to them or better yet, think about applying on behalf of them!  What an amazing gift that would be!

Alexa has had one main EA since the beginning of January. Since being paired up with her, she has done wonderfully at school.  She has made many advancements and has had a great year.  We all (EA, principal and myself) agreed that it would be best if they remained together for Senior Kindergarten as well.
About a month or so ago, I was informed that a new EA had been placed with Alexa for next year.  While we all agree that her current one would be what is best for her, there are union rules and schedules that one must follow.  I get it, I work in unionized environment too--heck I am a union member!!! But when it is YOUR child that gets affected because of these stupid rules......I was upset!  And ready to fight!  As a parent of children with special/medical needs, you NEED to be PREPARED to fight ALWAYS!  Sad that it has to be that way, but it does!  THIS TIME, however was different!  I didn't have to fight (very much! lol)  The EA and principal and superintendent did it for me!  They kept on top of it, emailing the HR dept.; kept in touch with me and then on Friday I got the wonderful news that our EA had been called the night before and was offered (and accepted) next year's placement with Alexa.  Having other people advocate for Alexa certainly was different--I am not used to that--It is nice!  She will have such a difficult adjustment after the transplant; knowing that she has at least one familiar face and one constant person will make it that much easier!  It really does take that one stress off my plate!


I finally started getting things in order for the upcoming transplant--at least at work!  I have put in my leave of absence request and looked into benefit options while I am off without pay.  Last week I started packing up my personal files and other items as someone else is likely to be occupying my desk while I am off.  And then it hit me! The last time I packed up my "stuff" was exactly 5 years ago (almost to the day) while I was preparing for my upcoming maternity leave.  How different it was back then...If I knew then, what I know now! Isn't that the saying?.  It's true! I was young, naive, full of hope, so excited to be off for a year with the new life I was about to meet very soon.
This time if my co-workers had not been in the room with me, I swear I would have cried--I had to hold it in numerous times.  This time is nothing like the last--this time, I am scared, nervous, worried.  This time I know enough to know that we have quite a hard journey ahead of us!  
I gave some co-workers things of mine to "take care" of while I am gone.  Their response was "you are not going to be gone forever".  While it's true, that is exactly what it feels like right now.


Oh yeah--Alexa's 5th Birthday is in 3 days and we couldn't be more excited! We have quite the celebrations prepared.  In the meantime,  she has been scouting the stores for things to add to her "wish list".  This is her latest and I think she is pretty pleased with herself!

News

So I had hinted earlier that I would have some news soon....There are just some things that should be said face to face (or at least over a phone conversation)....Now that we have spoken to our friends and family, I can share it with the online world!

As I mentioned, Christian had started the extensive set of testing to see if he could be a live donor for Alexa. He is almost finished up his testing and so far things look quite promising; so much so that the Living Donor Transplant team have already assigned us a tentative date for surgery.

We got to select from two dates:  June 20th---which is her birthday, so for obvious reasons we declined that date and selected July 18th.
We still remain on the transplant list for now, so if something else comes up in the meantime, we will of course be called through that route.
Should that not pan out and to be honest, after waiting a year and 3 months to get the call (and be able to accept it), I am not holding my breath.  We finally have a plan B and  if all goes according to plan, Alexa and Christian will  undergo surgery at two side by side hospitals on July 18.

We are (or at least I am) nervous, scared, excited and every other emotion under the sun.  There is a ton of stuff that I need to do to prepare and I am not quite sure where to start.....