Dear John Paul,  

Yesterday, you turned 14 months old and exactly one week from today marks one year from the first time we brought you home.  The first time home only lasted 12 hours before you had to go back...but it was the beginning of a new chapter in our journey with you...enjoying having our whole family together.

I feel like we are starting on another chapter of your sweet life now.  It has become increasingly evident that, against all odds, you are struggling with something more than SMA.  A few weeks ago, you had a second MRI of your brain to monitor the increase of fluid in the ventricles of your brain.  The doctors did see a slight increase compared to your previous MRI that showed a significant amount of fluid, but are referring us to a neurosurgeon for a full interpretation and to assess if they would recommend doing anything to treat it.   Needless to say, I am very interested to hear how they feel it is impacting you and what they would expect to see in the future.  For that matter, I would love for someone to come up with a reason it is happening.

On an unrelated issue,  the doctors have tested and retested your urine and have found both times, that you have elevated levels of something called homovanillic acid.   This is one of the indicators, along with a few other symptoms that is causing concern that you could have something called a neuroblastoma.  It is a type of cancer that attaches to nerve tissue.   I won't lie.  When I got off the phone with the doctor who told me this I started searching the house for hidden cameras.....seriously?????  Is this some sort of sick joke????  I feel pretty silly even writing it as a possibility.   I hope I am being silly.  We will meet with the neurosurgeon one week from today and they are trying schedule the scan for the neuroblastoma for the same day.

I am trying very hard to just deal with known facts and not hypothetical situations right now.  Its not easy.  I feel the need to remind myself a lot that all of this medical mumbo jumbo is so complicated but your life is much more simple.

I love you John Paul.   I can't wait to snuggle soon.

Love,
Mom

Dear John Paul,

I am sitting next to you, here in the ICU.  You are pretty tired and trying to rest, but are doing much better and we are getting ready to go home.  Several times in the last two weeks however, I have had a few of those moments that inspires a prayer that goes something along the lines of ..."oh God, not yet, not like this."   You are here, at the hospital because you got some sort of bug that was making the stuff in your chest so thick that we had two do two emergency trach changes, (secretions get so thick that they block off all air flow) in two days and several other times in those days that things got very close.  Those times are so critical....and at one point we had a hard time getting the new trach in once the plugged one was out.  Not good.   The week before, we were at a muscular dystrophy clinic and your humidification chamber full of water tipped and poured down your circuit and back into your trach....potentially drowning you.   Luckily, we caught it pretty fast and you recovered quickly but they called the code just in case.

The appointment itself was very productive,  we talked about trying to get a special valve put in your circuit that would allow you to exhale through your mouth...thus passing through your vocal chords....it would just be so amazing to hear your sweet voice!

You had a second brain MRI because some of your doctors are concerned that you could have some inter cranial pressure that could be causing your lack of ability to really focus with your eyes.  We could get results as early as today...if they do see pressure...the bad news is there will be a lot of procedures in your future....the good news is that there may be something they can do to help you...which would be amazing!

The second part of this letter I wrote from home and you are just getting ready to start a new day.  I love you, little man...

Love,
Mom

Dear John Paul,

Wow!  Where do I start?  At present you are two days away from celebrating your 13 month birthday.   A lot has happened in the month since your big 1 year milestone.  You had a lot of "firsts" actually...you attended your first Mass...celebrated right in our dining room...also, your first Christmas at home...which was absolutely wonderful...your first taste of a candy cane...on December 22nd you also had your first pneumonia diagnosis which was scary for mommy and daddy but luckily, it was quickly downgraded to tracheitis which is a lot easier to treat for kids with SMA.   You did have to spend a couple of days at the hospital after Christmas when you started bleeding a lot from your trach because of your infection, but we got a better medicine and you were able to come home fast.  You also celebrated your first Kilner Christmas at the Heights (daddy's alma mater) and got to meet a whole lot of your family that you hadn't gotten to meet yet...and everyone loved meeting you and couldn't get over how big you've gotten...already wearing 24 month clothes!

I just want to say thank you, John Paul, for the great joy you bring to our family.  My favorite thing in the world is watching your siblings love you in different ways...Ben brushing your hair, Madie kissing on your toes or playing Play-Doh with you, Joe singing Christmas carols to you, Liam reading you stories and just sitting and talking with you...all of them playing games with you on the iPad...

I savor every moment.

I love you so,
Mom