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!

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!

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!

Saying Goodbye

Today is 4 months since Alexa was transplanted.

Today we also got to say goodbye to something, that we have gotten very attached to.  Her PICC line.

Now, before I get into that, I have realized that not everyone knows what a PICC looks like and it can be hard to visualize.  Yesterday being the last time I would have to flush this PICC line, I took some picture of what it looks like. 

This PICC is placed into her right arm. 

 

 

Every day that it is not accessed--through taking blood or hooked up to an IV infusion, it has to be disinfected, flushed with a saline solution(pictured below) and then heparin lock.

 

 

 

Then we wrap it with gauze

 

 

And finally we wrap it in one of our arm bands (a sock that we cut and sewed at the bottom) to keep it protected.  I think I just might miss matching her arm band to her clothes!  And I think she will too as she asked me to keep them.

 

 

 

So now that you know what a PICC looks like, we can talk about it's removal today.

 

 

Last Monday, we had a clinic and labs appointment.  They were super impressed that it has been a month since we have completely been off the lasik and there is no sign of her ascites returning. They asked if I would like to speak to some metabolic families considering transplant--of course I said yes!

 

Her LFT's came back still above normal but in the range they have been trending at.  They are not sure why she keeps on bringing back higher than normal numbers but are happy that they are staying stable. When I went to write her numbers down in my "Alexa's transplant booklet" I flipped back through her previous lab reports to compare and actually her numbers from Monday are probably the best they have been in more than 2 months. For those liver mama's and papa's out there, AST was 59 and ALT 60.  So, yes they are still higher than normal but they are actually trending downwards.  That a win in my books! 

 

FK just made it into the range that they wanted, it was on the low end.  So retesting next week.

Overall, they are very happy with the way Alexa has recovered. So happy that they made the appointment to have her PICC removed.  I was told on Thursday night that it would be today--November 18th--4 months post transplant.

I had very mixed feelings about removing her PICC line. Crazy as it sounds, I developed a bit of an attachment to it.  For one thing, it makes draws and IV's so easy.  Incredibly Easy!  The thought of doing peripheral draws again, even if they are only every 2 weeks scares me.  I hate seeing Alexa scared; I hate when she is in pain because they have trouble locating her deep wiggly little veins. 
Secondly, I think the PICC kind of became our (well my) safety net.  If for some reason, her virus numbers become present, like EBV, we would have to start IV infusions again.  If for some reason, things go bad, we would have to start IV's again.   The what if's scare me and this PICC made it seem not so scary.  Crazy! I know!

But it had to come out.  The risk of infection is too high to keep it in because mama likes it there for the "just in case" scenarios.

I told Alexa in advance, as I always do.  I find preparing her makes the appointments go smoother.  She trusts me more because I always try to tell her exactly what they are going to do to her.  Does not always work because frankly some things come up that I do no foresee.

Alexa was very nervous, she cried for awhile, telling me how scared she was that it would hurt.  I tried to comfort her the best I could, but the fact that she had trouble falling asleep last night, probably is reflective of how anxious she was about this procedure. 

It was tough getting any smiles from her, but we did manage this one before we went in.

They wrapped her up and any mom who has to do this can tell you how much the children hate it. But they had to keep the area sterile.  Being restricted while doctors are poking and pulling at your arm is pretty terrifying, so we put her B*Strong Bear in tight with her so that she could feel protected.  They had put a numbing cream on her but the PICC was pretty attached to skin and so gentle tug was not enough.  They had to use a local anesthesia to numb the area and then cut the skin off of the PICC.  See what I mean about unforeseen.  I did not warn Alexa about needing to freeze with a needle because I did not realize that they would need to.  Maybe we would have less tears had I been able to tell in her advance, maybe not.
But I like to be honest with her so she does not begin to fear that I am not telling her the truth.
Anyhow, our nurse was great and tried to distract her as best she could while the doctor worked quickly.  It came out smoothly after that and a minute later we got this smile out of her.  Her bravery continues to amaze me.
 

 

 

We are pretty excited about being able to take a bubble bath on Thursday!

And in other areas, we had a parent-teacher interview on Thursday and am so happy to hear that her teacher had no concerns, either academically or behaviour wise.  She is following the curriculum nicely and follows instructions and routine just like all the other 5 year olds. 

Neurological damage has and always will be a concern.  Did her brain suffer from those ammonia hits? Can they be overcome? Did the 5 years of elevated citrullin do any permanent harm? 
So when I hear that she is doing well and there are no concerns, it is like music to my ears, a sigh of relief until next report cards and parent-teacher interviews approach. 

I can't explain how much this girl amazes me! 

Happy 4 months Baby Girl! 

Momma loves you to the moon and back!

SK here we come!

Well she is off to her first day of senior kindergarten.  I truly was not sure, even as late as Friday, whether she would make it in today. But she did. So we will take it one day at a time.  Alexa is going to in part-time and slowly work her way up to full day.
She was so happy and excited to see her teachers and friends! She woke up bright and early and with a huge smile on her face!

She did wonderfully--She went straight up to her teacher and showed off her fancy new lunch bag that she picked out--Disney Fairies!

She had decided that she did not want a new back pack this year--was quite content with the Minnie Mouse one! Who am I to argue with that?!? She opened up her lunch bag and showed her snack--Cheese String and yogurt!!! (snacks she would have never enjoyed pre-transplant)

And momma did okay too!  I had a bit of help from her wonderful teacher who knows me well and knew that I was probably more nervous than Alexa was, and so she whisked Alexa off right away to see some of her friends.  She almost forgot to give me a hug and kiss!!!!

And I cannot lie--there were a bit of shed tears, but mainly because many people (ones I did not even know) came up to me to give me and Alexa a hug and tell us how happy they are that Alexa is doing to wonderfully and back at school with the rest of her friends.  I did not realize that so many other teachers, staff, parents and students knew about Alexa's situation and care so much about her.  She has touched so many people in ways I have never imagined.

As always, Alexa showed me just how brave, strong and resilient she is.  6 weeks ago, she was being transplanted and today she is at school.  This is one day of super mixed emotions, I am so happy to have her doing her "normal" kid stuff again, that is happy, ready to learn and thrive, but am having a bit of trouble letting go.

This picture makes me smile!  My darling girl has changed so much in a year's time!  As always, watching her grow and flourish has been my pleasure and can't wait for what she will impress me with next.

Hoping everyone has a great first day at school and a great year!

PS... I know there are many people who are wondering how the procedure went on Friday.  It went very smoothly.  She was given a mild sedation that made her giggly and drowsy, kept her calm, and left her with no recollection of the event.  I was allowed in the room with her, and held her hand while telling her stories to keep her still while the doctors took their sample.  They were able to get a good sample and it looked clear--which is good news, and we should have results today!
In the meantime, over the last two days, she has gone to the bathroom a lot and today, I measured her stomach and it is about 2 inches smaller than it has been since this whole thing started. I am hoping that this is a sign of positive news to come later this afternoon. I am more confident that we will get over this hurdle too!

UPDATED @ 1:49pm
Just got the results call back from the transplant team.  NOTHING out of the ordinary that could be causing the excess build-up of fluid.  There are no obvious signs of infection--the cultures have come back negative. And the fluid was clear, indicating that it is not a leakage of fat.  This is good news! It really is, but still does not give us an answer. So, Alexa is being booked for an ultrasound sometime this week and she will do bloodwork at the same time!  In the meantime, we are hoping that she continues to release the fluid in her urine and her stomach continues to go down.  

Plan B

I keep getting asked if Alexa's stomach has gone down any.  Has it gotten any better?

The answer is NO!  

It has not gone down very much.  She is uncomfortable, not eating a great deal and in pain after drinking too much water or milk.  However, it doesn't look like it has gotten any worse either. That is the silver lining that we are holding onto.

Enjoying Starbucks

We let her body "try to work itself out" and it didn't work any so we are onto plan B.
We went for our regularly scheduled appointment yesterday--bloodwork, 1 hour of IV gancyclovir, 4 hour IV of cytogam and a consult with IGT--Image Guided Technology.  You might remember that is where she got her PICC line inserted, that dreaded spot in between the surgical waiting and the PICU--the spot that gives me anxiety just thinking about it--yep right back there!
After a bit of back and forth between the transplant team and IGT team, this is where we are going with the ascites.
They have Alexa booked for an abdomen tap on Friday morning.  A procedure in which they will insert a small needle into her stomach and drain a bit of the fluid to have it sent to the lab for testing.  We should know the results in a couple of days and then we can(well really, the doctors can) decide a course of treatment which can include diet changes (wonderful!--just as I thought we had gotten over the diet restrictions!) and/or IV medications (cause she really isn't on enough right now!)

A lot of things about this procedure was/is causing me some stress--the biggest one being I really do not want her to go under anaesthesia for a third time in 6 weeks.  To do a full drain of her fluid, they would have had to put her under.  It was instead decided that they would take a small sample.  This means that she will get a small sedation and local anaesthesia while they do the procedure.  I am happy about that but conflicted because I do not want her to be further traumatized by witnessing any more procedures.  I asked if I can go in the room with her, and the consult doctor said that if he is on during her procedure, I would be able to go in but it is up to which doctor is on. If they are smart, they will let me into the room with her, because if they don't, they better be prepared for one hell of a fight from Alexa.  She is still not over being taken by the nurse when she got her PICC in, so I don't envision a small sedation being enough to keep her calm during the procedure.

I know it could be a lot worse--It could be SO much worse. She is happy(most of the time) and her liver is healthy!
But right now I am scared. This procedure is bringing up a lot of emotions--probably ones that I have not had time to deal with since July 18.
I do not like not having any answers.  I do not like that the doctors and nurses don't have any answers.  I would like the procedure to go off without a hitch and for us to come back with a plan that works(and quick).  I would like to start preparing Alexa for her first day of Senior Kindergarten next week and the upcoming year, but I feel like we are stuck in some sort of limbo. We are moving one day at a time, so it is hard to get excited about buying a new lunch bag and first day of school outfit when I don't even know if she will even be able to go to school on Tuesday.  

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!  

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!