Christmas Memories

I love Christmas.  I always have.  Easily my most favourite holiday of the year.

But when you have children, things change.  For me, Christmas got better, if that was even possible. It took my enjoyment of Christmas to a whole new level. 

I have always been grateful for every year that we are together and healthy to celebrate amongst our family.  We have had some close calls in the past but thankfully, Alexa is doing wonderfully right now.  Ironically, she has remained the healthiest of all the Morales' during the month of December.  We were one of the lucky ones to be able to celebrate Christmas at home. 

Alexa really understands all the joys of Christmas this year so I really tried to go all out and ensure that we made the most of it. 

We continued with the family tradition that we started last year.  Our Elf on the Shelf, Twinkles came back from the North Pole to hang out in our house for December.  I know this little Elf is quite controversial.  Some people hate it, others love it.  I happen to be in the boat with those that love it. 
More often than not, Alexa woke up at the crack of dawn to hunt down our Twinkles and see what she had been up to while we slept.  And yes, it can be quite tiring to come up with new ideas (realistic and age appropriate ones at that) and to then remember to put her out at night or before Alexa woke up.  But when I saw Alexa's reactions to Twinkles new adventure each morning, I knew that an inconvenience of 25 days was little price to pay.  Here are pictures of some of our favourite Twinkle adventures.  Alexa's expressions are priceless.

And then we moved onto "The Twelve Books of Christmas".  This was a new tradition that we started this year.  I wanted to do something to celebrate the twelve days of Christmas, but wanted to stay away from Advent Chocolate Calendars as well as purchasing gifts.  Let's face it, she was going to get enough at Christmas and I wanted this to focus more on family. 

"The Twelve Books of Christmas" was perfect.  Alexa was re-gifted a whole bunch of books by her aunt, so they were all new to her.  I wrapped them up and put a number from 1 to 12 on each. With the help of some friends, we created ornaments, again with numbers 1 to 12 on the inside.  Each night, Alexa got to go pick out an ornament, open it up and find the wrapped book with the matching number.  We got to snuggle up and read the book before bedtime.  Alexa really enjoyed this.  She is very much into books, so it was a perfect tradition to start.

We also got to do some other Christmas crafts, decorated some gingerbread men and did lots of  baking.

 

I love the smell of freshly baked goods in the house. So yummy!

 

 

And we threw in another Disney on Ice special.....

 

It has been quite a busy December, and I would not have it any other way.  Alexa was super excited to open all her gifts from her family on Christmas Eve and evening more excited when she woke up on Christmas morning to find out what Santa brought her.

 

We hope your Christmas was as merry as was ours!

I cannot really fathom that there is one more day left in 2013.  It has been quite a year. I still get tears in my eyes when I think of all that we have been through this year.  I am not sure that will go away anytime soon, maybe never. 

When I look back, it seems like a lifetime ago yet the memories are as fresh as if they were yesterday.  Does that make any sense?

And then there are some times, like when I look at this picture that I see just how far we have come, just how much my baby girl has grown.  I see how much she has overcome, and how positively radiant she remains through it all. 

It is times like these, that I know we were lead down the right path.  We were steered in the right direction and I am forever thankful to have been given the strength to make the hardest decision of my life.

I thank you for being with us during 2013, and hope you will stick around for 2014.  I am hoping it is not nearly as exciting, but it is sure to be filled with lots of love, hope and faith!

Wishing all our Liver and UCD friends, a prosperous year filled with happiness and above all, health!

Happy New Year!

Happy Liver

Just a quick post to update on Alexa's labs and clinic yesterday.

Turns out, Alexa's liver is quite happy right now!  Her LFT's have remained quite stable over the last two check-ups.  They are sitting happily at 48(AST) and 60(ALT).  They are the best they have been in months and SO very close to being in the normal range.  And she has a runny nose! So I am quite pleased with those numbers.  Who am I kidding?  I was ecstatic yesterday at that piece of news.

She finally gained some weight--No surprise there though, as she has a new found appetite that I am just loving!  She plans all her meals way in advance.  Tells me exactly what she is having for snacks and lunch. 
She is not a big fan of meat.  She will eat certain meats, like chicken nuggets, hot dogs, ground meat in pasta or meat loaf. But I don't think she will ever love a big, thick steak.  And I don't really care. 
She finally has a good relationship with food.  She ENJOYS meal and snack times.  Her protein is perfect right now.  She is happy and healthy and gaining the appropriate amount of weight.  So if she decides she never wants a steak, I really don't mind.  She eats plenty of food and quite a variety.  That is more than good enough for me!  My days of fighting with her at meal times are gone. 

She also grew some, which was pretty evident by the lack of pants she owned that covered her ankles.

There is one thing that we will be watching closely--her EBV and CMV levels.  Both of those are common viruses that most of us have.  They remain dormant in most of us, but wreak havoc on an weakend immune system.  Since Alexa's new liver was EBV positive, she was given the gancyclovir and cytogam infusions after transplant to ensure that the viruses remained dormant while her immunosuppression was at it's strongest. 
Since she has finished both medications and her immune system is still being suppressed quite a bit, both viruses have now appeared to become present in her blood.  This is not a huge surprise to us.  The viruses have so far not been replicating themselves.  In fact, the viruses were present in such low numbers that the lab could not measure them.  

It is quite common in transplant kids, but needs to be watched carefully to ensure that they do not get out of control.  Once yesterdays levels are reported back, the hope is that we are able lower her immunosuppression just a tad to see if her body is able to fight off the viruses on it's own.  It is quite a sensitive balancing act. They cannot lower her immunosuppresson too much as that could remind her body that she has a new liver and send her into rejection. 

They have to find the perfect balance between keeping her strong enough to fight the EBV/CMV but not so strong that she will fight her new liver.

It's hard work keeping this liver happy!

But we have a great team and they are doing a good job of monitoring all her levels!

And to show how appreciative we were of their never ending devotion to us, Alexa and I got busy over the weekend baking cupcakes for our great team.
 

We also decided to take some over to 6A, the transplant ward, where we took up residence in July.

Alexa carried those trays to the nurses and doctors proud as a peacock!  And was super excited at how thankful they were.
 

Alexa's doctors and nurses work so hard; they are so incredibly busy, making sure that our kiddos get the best treatment possible.  If felt great to show, even in this very small way, how appreciative we are of all they do.  

When will this line go away?

It has been awhile since I have updated on here.  I started back at work in early November and what can I say?  Getting back into a routine certainly takes some getting used to.  I tried to organize myself as best as I could:  I made lunches the night before. I made dinners or at least did most of the prep the evening before or in the morning before dropping Alexa off at school.  It certainly made it easier to do pick ups, get a meal on the table, do homework and then have some snuggle time before bath and bedtime routines are started. I still do miss all that "us" time we had.
Add in the arrival of the Christmas season and well, needless to say, there has not been much time to blog.

But there has been one thing that has been pressing on my mind.

After Alexa's scar healed from the transplant surgery, there were two persistent "dissolvable stitches" that had not quite dissolved.  One was right on her scar and that one actually broke through the skin. The other was just above her line, and that one was protruding but had not broken skin yet.  They are like tiny plastic strings that are more of a nuisance than anything else.

In the last month they were becoming less and less noticeable.  The one that had not broken skin, actually disappeared, I gather it finally dissolved.

So, last week I had been helping Alexa get dressed and realized that I had not felt the other in a bit.  So I started feeling it despite some reluctance by the little one.  Boy, is she ever snarky in the morning!

I was so happy to see that the pesky little stitch had also dissolved.  I told her the good news and how happy I was that it was no longer going to pester her.

That is when she turned to me and pointing to her scar said
"Mommy, but this line is still here.  When is the line going to go away?" 

I immediately cringed, thought quickly and told her that it was not going to go away.  It will get lighter but will not go away for quite awhile.

She then said
"But mommy, I don't want to go swimming with that line there!"

And that is when I had to hold it together because tears of sadness wanted to stream out of me!

I would like to think that I handled it okay but I am just not sure.  I told her that her scar was special.  Her daddy had a similar one and it meant that the two of them were so brave, so courageous and so strong.  That only very special people get to have a scar to show everyone how very special they are.

She said okay and then said that would go swimming in her Rapunzel bathing suit.  It is the only full-piece she owns, so I guess I was not so convincing.

And I can't say I blame her for worrying about that scar.  Prior to transplant, I hated the thought of her perfectly, beautiful round belly being marked for life.  There were many days before the transplant that I kissed and rubbed that perfectly beautiful and unmarked belly knowing that my days for seeing it like that were numbered.  I know it sounds dumb--here we are contemplating transplant to eliminate the risk of brain damage and I was worrying, essentially about appearances.  It sounds superficial.  But I have to be honest, it was a thought that I had to shove out of my brain because it was too much to handle.

But the instance that tape came off and that scar was visible, something changed.  Instantly, I did a complete turn around.  I saw that belly and that scar and I instantly fell in love with it all over again. I love to rub and kiss it, when she will let me of course.  That belly is now my symbol of what a brave girl I have and reminds me of how far she has come.  To me, that scar is truly beautiful.

I am saddened and worried too that Alexa, at 5 years old, thinks that there is something wrong with her stomach that needs to be hidden.  How much stock do we put into appearance when my 5 year old is choosing to wear a one-piece over her favourite bikini's? And how do I change her mindset?  The last thing I want is for to have low self-esteem  or  low self-confidence because she has some different medical needs.

How do I make her see how beautiful, smart, brave, courageous and special she truly is?  I don't know yet, but I sure as hell won't stop until she sees what we all see.

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!

Road Trip & Hallowe'en Fun

There are a couple of reasons I wanted to go on a road trip with Alexa:

With me going back to work very soon--YEP, you read that right.  As of Monday morning, I will once again be a working girl.  I could get into that more, but this is a happy post, so I am moving on! Since I am going back to work, I wanted to take our last couple of days together and spend as much quality time together as possible.
I think we accomplished that--two 9 hour drives in 4 days with a inquisitive 5 year old is more quality than anyone can ask for!

                   

                   


Alexa is done from all infusions!  YAY!!! We are no longer tied to the home with a nurse coming to visit us every day.  We no longer have to go to Sick Kids for 4 hour infusions of cytogam.  So this was our way of freeing ourselves.  Alexa did not have the greatest of summer.  Don't take me wrong, I know she recuperated much better and faster than any of us dreamed of. But to me, the summer is my favourite season.  I love going swimming, going to the beach, amusement parks, etc.  All of which, Alexa could not enjoy for obvious transplant related issues.  So this was my way of making it up to her. My  way of giving her a bit of her childhood summer back.

And finally, we took this opportunity to further celebrate hitting 3 months post transplant.  I am a big believer of celebrating everything. All the little things, all the big things. Some thing that others may take for granted--We celebrate.  See, we were never given any guarantees, so we celebrate all the moments that we are given!
I bought us a cake, decorated it and surprised Alexa with it when she came home from school.  We then went out on a mommy/daughter transplantiversary date.

                   

Wait until you see what we have got planned for one year!

So back to our road trip.  We decided that we would go to Pennsylvania for the weekend.  We left early Friday morning and got to our hotel at about 3pm.  Got some late lunch and then hit up the Hershey World of Chocolate:

          

 

          

 

                                   

We took a ride into the making of chocolate and did some trick-or treating.

                 

Made some smores.

                 

 

                      

 

Went on a trolley around Hershey Town.

And got lots of goodies.

The next day we went to the the Hershey Museum and Hershey Park, where we went on loads of rides.
                                     

                                  

               

                          
           
 

On Sunday, we drove 2 hours east to Langhorne, where we went to Sesame Place.  We went on even more rides.  Alexa went on her first big girl rollercoaster.  We saw two live Elmo and friends shows and did even more trick-or-treating if you can believe it. 

                            

 

           

 

                          

                         

 

One road trip! Hundreds of memories! We are already in planning mode for our next one!

And who could forget Hallowe'en!

Not even the poorest of weather could stop this little princess from getting her fair share of treats. 

            

 


                                        Hoping your Hallowe'en was as great as ours!