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! 

Labs and Metabolic Clinic

Today we had another set of labs scheduled.  We were just there on Monday-- prior to that we thought that we could try going to labs every 2 weeks.  Clearly the fact that we were back today is an indication that we are not ready for every 2 weeks.
I had mentioned in my last post that Alexa's Liver Function Tests (AST and ALT) had been on the rise. They were inching their way up slowly to a place that would require many more investigative tests should they not go down.  So Monday, I was really hoping that they were on the down trend.  Things were looking hopeful...
Her doctor came in and was so excited to see that her ascites is gone! Completely normal!  He was kind of surprised, and still bothered by the fact that he could not give me a reason for the ascites in the first place. He is a scientist after all, and they NEED reasons for everything!  And the fact that it mysteriously came and went on its own, even after every test under the sun reported no abnormalities, will just never sit well with him.  But it does with us....we gave her time to do her thing and she did.  We are and have been weaning down her lasik (the medication that helps relieve fluid from her body) and as of Monday, coincidentally, Thanksgiving for us Canadians, she will be completely off of it if we do not see signs of ascites returning.

But back to those LFT's.  Dr. A came in and told me that they had increased again.  And for my own sanity, I think he decided to not tell me how high they had gotten.  Alexa has had a cough since about Saturday, and the rise could very well be explained by the virus, however the continued rise could also mean a host of other things, one of the worst being rejection.  So although, I had not been panicking, these numbers have definitely been weighing on my mind.  If I had KNOWN that Mondays AST was 84 and ALT was 83, I think, who am I kidding, I KNOW panic mode would have set in.  And I think they know this too.

Since I already had a metabolic appointment today, they asked that I come in a bit early to have our labs done again.
I got our metabolic nurse to give me a print out of today's lab results as I could not wait for transplant to call me in the afternoon/evening. The good news is that they are better.  Not perfect yet.  They could be lower. It would be nice if they were even lower.  They still are slightly high.  But they are better than they have been in the last 3 weeks.  We are about as good as we were at our September 17th appointment.  And as I was typing this, I got the call from the liver team with the rest of our numbers.  FK is perfect so no dosing changes necessary!  Phew!!! Again, I breathe a sigh of relief!

Meanwhile our metabolic team was super happy with her progress.  It was nice to be sitting in the metabolic offices, and to not be anxiously waiting for our nurse and dietician to walk in with the dreaded ammonia results.  For once, I did not care and did not even ask (not even for old time's sake!) It was nice not to have to document what she has, or more frequently what she had NOT eaten, as was more often than not the case with Alexa pre-transplant. We didn't care about how MANY calories she consumed and we didn't even plot her on the growth curve!
Instead we met and talked about all the wonderful things she has been doing and eating!  We chatted about how school is going and different life is from just a couple of months ago.
They looked at her amino acids and were generally happy!  The only one that was off is her arginine.  It is low, as is typically amongst citrullinemia patients post-transplant, so they have started her back up on a low dose of L-Arginine.  (one of the meds she was on pre-transplant).  It's not the end of the world and I knew this day might come eventually.  Chances are she will be on it for a long, long time.

As I mentioned earlier, we are celebrating Thanksgiving this weekend.  And boy do we have a LOT to be thankful for.  I am thankful for the wonderful doctors and nurses at HSC.  I am thankful that we live close enough to be able to enjoy the luxuries that HSC has to offer.  I am thankful that I married such a loving and devoted father who knew that the only chance his daughter had of living a life free of brain damage, was to give her a part of his liver.  He did not waiver, he did not second guess himself.  He just KNEW what had to be done. I am thankful that right now I have a healthy happy 5 year old girl who was given such strength and bravery. I am thankful that for the first thanksgiving ever, Alexa will be able to really enjoy a thanksgiving dinner and at least try turkey. I am thankful for our family and friends who have supported us along this route we have embarked on.  The list could go on and on!

I asked Alexa what she was thankful for.

Her response:

I am thankful for cheese strings and cheese slices and wild wings mac and cheese bites! 

And with that I would like to wish all of you a wonderful, happy and healthy Thanksgiving from our family to yours!!!!  

 

The results are in!

And if the length of time it took to report back to us didn't give it away (I've learned, the worse the scenario the faster the call), this face will surely tell.

Loving her "reward" shades!

The CT reported absolutely no narrowing at the connections in the vessels and no blood flow issues!  Happy faces and thumbs up all around at this piece of news as it means that no surgical intervention is necessary! Phew!!!!

Of course, the harder you look, the more you will find. The CT reported "a noticeable prominence of her small bowel"  Huh?  It was explained that a portion of her small bowel is slightly enlarged or swollen....
What exactly does that mean? Maybe nothing--probably swollen from the trauma of the surgery; maybe it was like that all along, maybe it wasn't.  Maybe it will be like that from now on....Who knows?  But the doctors do not seem so concerned and to be honest, I am not that much either.....It will continue to be monitored at our regular ultrasound appointments.

We did have a slight scare at yesterday's appointment which resulted in repeat blood work.  Of course the specific blood test they were monitoring (PT-INR) could not be taken from the PICC, so she had to have 2 separate peripheral draws making her a not so happy camper momentarily. Not sure how we are going to go back to draws once our PICC is removed (which I hear might be in the not so distant future!). Alexa got through the second draw, and I got through the waiting for the results and her level came back at a perfect 1.1.  I took a huge sigh of relief as the first level reported was super high--immediate intervention kind of high! Glad we did not have to go down that route! I am sure the lab just wanted to see how quick I could grow some extra grey strands! Turns out--pretty damn quick!

We have her prograf level exactly where we want it right now! And in 1 week, we eliminate 3 medications!!! Her daily IV infusion of gancyclovir will be done in about 3 weeks time and we only have 2 more of those 4 hour cytogam infusions that we get done at the hospital! I can see our 3 month post-transplant up upon the horizon!

And if it were not for those pesky LFT's, I would be doing a happy dance right now! Her LFT's are being closely monitored (more so than usual), they are not concerned YET, however they are (and I quote) being "mindful" of them.  They have been increasing slightly over the last 3 weeks.  Not huge, only about 5 - 10 points, but increasing 5 points at each visit for 3 weeks in a row is definitely not the trend they want to be going in.  She has had a runny nose and that could very well explain the increase but still not happy.  We definitely want to start heading in the other direction.

And this seems like a great time to remind everyone of The Great Camp Adventure Walk that we are doing on Saturday to give back a little to the hospital that has given us so much!  I am soooo close to my personal goal.  Thank you from the bottom of my heart to all those who helped make this happen!

If you would like to donate please click on the link below:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?px=1255435&pg=personal&fr_id=1040

Superstar Patient

Alexa is a superstar! Seriously!

We had our CT Scan this morning, and partly my fault for not asking, partly our team for not informing us, that the specific scan they requested, required a contrast dye to be traced.  So that meant that her ever so valued PICC line could not be used.  They had to insert an IV!

This is probably one of Alexa's biggest fears.  Nurses tend to have a very hard time trying to access and keep a good IV, so naturally Alexa is VERY apprehensive terrified.  She started crying the moment I told her that the nurses had to do an IV.  The nurses put the numbing cream on her in a couple of places(and it's a good thing they did this) and off we went to wait for the cream to take effect.
Then came time to try to access.  Alexa was so scared, but she tried so very hard to keep as still as possible even through her tears--she knows that if she starts panicking, chances are it will not work and they will need to pinch her again.  Let me tell you she did a great job.  She counted and took deep breaths and mommy held her tight so she would not have to look at it.  Through no fault of her own, the first stick did not work--they got it in and got a bit of blood flow but the vein bruised and therefore not usable.  It is so upsetting to have to tell my baby girl that it didn't work when she looks at me and says "but mommy, I stayed so still". YES! Yes you did princess, this was not your fault, your vein just did not cooperate.  We calmed her down and reassured her of how proud we were and how brave she was.
And off to try again in another location--this time it worked!!!  

We got into the CT room and prepared her of exactly what was going to happen.  Once she knew that there were no more needles and she was only going to have 4 pictures done, she was a happy little girl once again.

Alexa stayed very still for all the pictures--Apparently this shocked one of our metabolic doctors who we ran into while leaving the CT room.  She thought they would have had to put Alexa under anaesthesia.  Pffft--seriously?!? Have you not spent any time with this child?

 Mommy and Alexa sang and held each others hand as she went in the machine.

Only child I know who will keep a smile on her face as she goes through a CT machine

And for being such a great patient, she got to pick out a special surprise toy:

We will not have results for a couple of days--promise to update as soon as I hear!

Guess who's famous?

Okay! Not really....but famous enough for this household.

A bit ago, I received a call from the SickKids Foundation who are hosting The Great Camp Adventure that we are taking a part in.  They called to inform us that we had won 4 tickets to the American Idol Live Concert at the Air Canada Centre.  It was a great night.  We met another wonderful family who is participating in the event also.

We also got to meet two of the staff who work at the foundation and they asked if they could do a post on their blog about Alexa's journey with The Hospital for Sick Children.  

We were only too happy to be asked to be a part of it!

http://dothehappy.tumblr.com/post/61321571149/superhero-dad-donates-part-of-liver-to-daughter

Plan C?

I have kind of lost count of where we are at with the drama behind what is causing the build-up of fluid in Alexa's abdomen.
Alexa had an ultrasound done on Thursday which revealed that she had the EXACT same amount of fluid from when her ascites first popped up a month ago.  It has not gone up--And that is good! But it had not gone down either--not so good.
That kind of baffled me, because her stomach HAS gone down--I have been measuring faithfully every morning and it has gone down from 26 inches to 23 inches. She has made slow but steady progress there. Her stomach is also much softer. She is MUCH more comfortable and eating much more (of the foods she likes of course--like these Corn Flakes French Toast which she helped prepare. And by the way, thank you to whoever first pinned this on Pinterest because they are sooooo delicious!)

BUT the ultrasound is showing us something different! In addition to the fluid, the ultrasound also happened to reveal some narrowing around the connections in her vessels.  Now this could be completely incidental--It could have always been that way, and may be HER normal.  It may or may not have anything to do with the ascites.  However, they are looking for something, anything that will lead to why she developed the extra fluid and why it has not gone down as quickly as they have hoped.

So we move to plan C--At least I think this is plan C or is it D? As I said, I've lost count....
Yesterday after the surgeon and GI docs had a look at the ultrasound and her lab work up in detail, it was determined that they would like to schedule a CT angiogram.  The angiogram will get a detailed look at the vessels and check flow, pressure, etc.

Now this is normally the point, where we insert my major freak out.  Only this time, I am not!

A friend told me to look at Alexa and how she is doing to get a sense of how things are.  Well look at this face as she steals my fruit and granola yogurt.


She is happy! She is excited to go to school--literally runs on the way there and enters the yard without so much as a kiss or hug (mommy is not liking that at all!).  We have extended her day this week to 2:30pm!

She is enjoying trying new foods--as long as it does not look like meat!  Although she ate spaghetti with meat sauce and told me that she liked that "brown stuff". LOL.  When I told her it was meat, she looked at it a bit more closely and said "see mommy, when you mix it with the pasta, you don't taste it--I like it!"  That's a win in my books!

She has been doing extra homework with me in the afternoons to make up for the time she is missing from school.  And she is doing it all really well!  Her memory is so good--she remembers tiny details that I could never. Her vocabulary and sentence structure has sky-rocketed--she talks a mile a minute! And continues to be the most sweetest, thoughtful little girl.  Even when I forget, every night she reminds me to say our prayers for her vavo (my grandmother) who is in the hospital as well as any of her UCD family who might be in the hospital.

So, I look at her and apart from her being slightly too skinny--she has lost a ton of weight, I know she is doing fine right now!  We promised to take things one day at a time.  And that's what I am doing.  I will have faith and pray that the angiogram does not show us anything alarming that requires "intervening".  We will continue to work on her medicine dosing until they have reached the perfect balance her body wants.  I will have faith in my girl and not freak out--because she wouldn't!

But just to be on the safe side, would you mind throwing out a prayer or two to ensure those pesky vessel connections do not become a thorn in my side?

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.