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.

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!

8 Months and Going Strong

It has been over a month since I have updated and to be honest, I don't have a lot to say.  But tomorrow is 8 months since the transplant and I could not let that go without acknowledging it.

We have been busy but as far as Alexa's health, not a whole lot going on right now.

We are down to monthly draws and for the third straight month Alexa's liver labs are bang on.  Right in the middle of normal.  Just where we like them.

We have clinic every 2 months at the moment.  Our metabolic appointments always brought on a ton of anxiety.  Fortunately for us, this does not hold true for our liver clinics.  It is just a different atmosphere. 
It is no secret that I absolutely adore our doctor, and at every visit I am reminded of why.  I never, ever have felt rushed with him.  He comes in, has a seat and is really interested in all that Alexa is up to--medically and personally.  He wants to hear about our trips, her favourite restaurants, her dance classes.  He listens to all our concerns, takes each one seriously and formulates a plan for them all.

The one concern that I have had is in regards to Alexa's hair. We have noticed her hair thinning out and falling out a lot more than normal.  At this point it is not so common. Immediately and up to 2-3 months post transplant it is normal for children to get small bald patches.  It is a combination of the stress of the surgery and all the medications.  Alexa did experience this. 
But this is different--they are not bald patches; but her hair is definitely more fragile and she is losing way more than is normal.  Dr. A took a look and it is not as bad a I thought; however, seeing as it is not common at this late in the game, he ordered a bunch of extra labs for next month.  There are a couple different reasons we are looking at.  Deficiencies in Arginine and zinc are possible.  Her prograf could also be the culprit.  We are going to monitor her for a couple of months and if her labs return normal, we will be referred to a dermatologist if there is no improvement.

We had an ultrasound as well and the doctors did a happy dance upon reading the reports that her ascites is completely reversed.  Well really I could have told them that and they knew it too.  Clinically she has not looked like she had any water build up at all for months.  But last ultrasound did show that there was still some water retention.    I know this bothered her doctor some, so he was quite happy for the reports to finally match up with what he was seeing. 

All in all, she had great labs, great ultrasound, appropriate height and weight gain! We can deal with a little hair loss....

It is hard to believe that just 8 short months ago, this is where we were....

 

 

The moments right before I had to leave my darling angel in the hands of her surgeons.

 

      

 

Who would have believed then, that 8 months later, this is where we would be:

 

 

 

 Sailing around the Bahamas!

 



Clearing Some Things Up....

In one of my most recent posts, I  inadvertently said something that hurt some people.  The same people who are very near and dear to me, that I care for greatly, and who have supported me through all the ups and downs.  Offending them was the last intention I had when I said that I have learned that "there is a difference between living with citrullinemia and living".
My error was that I failed to elaborate.  So let me correct that error here and now.

For the 5 years that Alexa had citrullinemia, I LET citrullinemia run our lives.  The fear and anxiety of managing citrullinemia took over our lives and I LET it be the deciding factor in everything we did. 

Did you know that there were times, after I put Alexa to bed, I would retreat to my own bedroom, sit on the bed and stare at her monitor with a knot in my stomach waiting for what would happen next.  If she slept too easily, my anxiety would lead me to think the worst.  If she was restless, my anxiety would lead me to those same bad thoughts.  I couldn't eat, I couldn't sleep.  All I could do was sit, stare at the monitor and cry. 
Did you know that not one day went by last year where I would go to pick up Alexa from school without that same knot in my stomach? Waiting to breathe a sigh of relief upon hearing whether she had a good or bad day. A bad day meant that I would have to be super alert for any signs of high ammonia.  A bad day meant that I was more likely than not going to the ER just to be safe. 
That anxiety was paralyzing and ruling our lives.

Did you know that I have wanted to put Alexa in ballet and dance since she was 2 or 3?  But LET her diagnosis deter me from it.  I was too afraid of her catching illnesses to enroll her. 
Did you know that before Alexa was born, I had plans to take her to visit family in Ecuador when I was on my maternity leave?  But I let the fear of being in country where they have more than likely not ever heard of citrullinemia stop us from visiting.
Did you know that my fear kept us from taking part in a family vacation to Cuba because the resort was a 2 hour bus ride from the airport? And a 4 hour (at best) plane ride away from our hospital...
Did you know that we have always wanted to take Alexa on a cruise....but of course, there was no way I was going to have that happen...what if she got sick on one of our "at sea" days, what if the hospitals in one of those ports did not have her emergency medication on stock?  So guess what, we put it off.  Fear of the what if's made me put it off time and time again.

I could easily have fallen back into the same trap after transplant.  Go back to that place where the fear of catching an illness forced me to keep her away from all those extra curricular activities. I could have easily let transplant take over the new excuse for not going out there to do all the things we have wanted to do and have Alexa experience all that I want her to experience.  And to be honest, there were a couple of times where I almost did go back to that place.  You know--THAT place where I try to keep her in a bubble to protect her from all the germs, viruses and illnesses out there.  But out there is where the world is.  Out there is where we have to live. 

And this is where things changed for us.  Our transplant team refuses to let us go back there.  When I asked our transplant team what they thought of me taking Alexa to Pennsylvania last October.  Their response was "Of course!! Why would you think it would not be okay???"  That is their response to everything! When I called and asked about dance and gymnastics...I got the same response.  They know we are scared but they refuse to let that fear stop us.

So you see, it was not the UCD or citrullinemia itself.  There are many, many families I know who have a child with a UCD or are UCD adults themselves.  They made it on that cruise, they have been to Hawaii, they do all those extra curricular activities like dance, track&field, soccer.  They learned what we did not--How to manage both living and citrullinemia in equal parts.  How not to let it take over all aspects of our lives.

Citrullinemia is a huge, undeniable part of our lives, of Alexa's life.  But it is not ALL of her.  She is made up of so much more.  And now that we know that we don't have to fear everything, now that I can breath a little easier, it is my job to show her all I can to help her decide who and what she will be.  It is my job as her parent not to fall back to that place where fear and anxiety dictate all again.
I have to teach her now that the way WE were living was not taking advantage of everything we had at our fingertips.
Citrullinemia wasn't stopping us....my fear was!

Happy 6 months!

Alexa and I made a cake to celebrate our 6 month anniversary of her second birthday, her second chance at life.

It was my very first time using fondant. I did not even have the "proper" instruments but with a  little bit of YouTube tutorials and lots of love, I think it came out perfectly.

Here you have it:

Happy 6 months to Alexa and her daddy. Without him, this day would not be possible.

And thank you Lord for keeping them happy and healthy these last 6 months!  We are looking forward to a lifetime of many more happy and healthy anniversaries.

Six Months

Can you believe that tomorrow will mark 6 months since the transplant?

Our world has changed significantly in just 6 short months.  We find ourselves moving further and further away from the UCD world as we knew it. Yet, as we move away from it, there is always some sort of reminder, somthing to ground us and remind us of who we really are and where we came from. The effects of citrullinemia, and for the most part, many of them we still do not know, but they will be with Alexa her whole life.  The trauma and anxiety that I learned to carry around on my shoulders will never be completely gone.  They may just disappear for a good long while.

When Alexa had citrullinemia it was not uncommon for me to have the same repeated nightmare--that Alexa's laboratory results would come back showing super high levels of ammonia.  I would wake up sweating and tears smeared across my face and pillow.  I recall clearly the last one that I had pre-transplant.  In fact, it was the very night before the transplant.  I had a dream that her ammonia was so high that the doctors had to call off the transplant.  I woke up in a panic and decided to forgo sleeping that night.  

I had not had one of those type of dreams until this past Sunday night.  I woke up remembering that her reported LFT's were in the 2000's.  Woke up in a panic and realized that although it may be fewer and farther now, the ingrained fear is still there.  That is what 5 years of UCD life did to me.  

But we are working at getting better.  We are working on healing those wounds. We are working at getting this new life of ours to usher out those deep fears that citrullinemai taught us.  And I think we are doing a pretty good job at it.

Alexa's last set of labs came back with wonderful news.  To quote her nurse, "her LFT's are beautiful". And yes they were indeed!  For all my liver mommas out there who NEED to know numbers, AST-34, ALT-31!  Take that citrullinemia! NORMAL NUMBERS FOR THE FIRST TIME EVER!  So good that we are now down to monthly draws!  

Metabolic wise, I have been tracking her citrulline and arginine.  Her arginine is sitting very comfortably in normal range and her citrulline in the low 500's.  If you recall, pre transplant they were in the 3500's, so seeing 500 is nice.  It is ok, but not quite normal yet.  But that's ok, I am determined to get it there. May take my lifetime to do it, but one day, one day, it WILL fall in the normal range.

And in the sweet 6 months that I have been a liver mom, I have learned some very valuable lessons.  I learned that there is a difference between living with citrullinemia and LIVING.  There is a whole world of places to see, things to try, adventures to go on.  We have been given a second chance. And so there is not a minute to waste.  I will endeavour to do all the things that we could not or were too afraid to try when we were living with citrullinemia. 

In this new world of LIVING, we go on spontaneous road trips to Hershey World.  

We go skating and won't worry about the exposure to cold, or the amount of calories that are being used up without being replaced.

And we will continue to skate, because, after all, we are CANADIAN!!!

In this new world, Alexa started taking ballet and acro classes in preparation for the dance school she will be joining in September.

And in this new world, Alexa is going to try gymnastics too!

Today, she asked if she could go rock climbing.  Well of course you can my darling girl!

This world is also taking us down south on a little Boston adventure this May, and we could not be more excited about it! One long weekend in Boston, two transplanted kids to cure a UCD, walking along cape cod, whale watching and plenty of good times to be had for sure.

Alexa has also asked to go back to Mexico and Cuba and maybe even try the Portugal trip that never happened last year.  Yes, my girl. We will do all of those too.  Maybe not all at once, but all in good time.

This little liver world of ours as we have come to know it, has been extremely good to us.  In fact, it has BLESSED US. 

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!