Clinical Trial Anniversary

And, just like that, it's been a year...

This week marks Little Buddy's one year anniversary in the clinical trial.  One year of our constant travels to Minnesota.  One year of constant prayer that the trial is working.  One year of not knowing if this will save our son.

I can tell you that Little Buddy has changed in a year.  He is still happy and mobile, but his verbal ability is starting to regress.  He has increasing issues with attention and impulsivity.  But we always knew that enzyme replacement therapy was a treatment, not a cure.  Our hope has always been that this treatment slows down the progressive nature of the disease enough to retain his quality of life longer and, potentially, give him a shot at the cure which we feel science is just on the cusp of.

The year anniversary also meant that we would be in Minnesota for a full week in order for him to have his neurocognitive evaluation, his MRI, his lumbar puncture, his PICC line placement with subsequent blood draws, and his new increased dosage of the enzyme.  I also had to try to keep him entertained through an entire week peppered with hospital visits!  Little Buddy is a lot to handle by myself through all of that, but luckily our friend Ms. A offered to fly into help.

Our first day was by ourselves, however, for Little Buddy's neurocognitive exam.  Afterwards, we had to find ourselves something to do until Ms. A arrived.  We decided to go to one of the zoos!  Besides the normal animal fun, Little Buddy was excited to see the dinosaur exhibit they had opened.

  

Ready to go to the zoo!

Someone got a little concerned when the animatronic dinosaur moved!

Hey T-Rex, you know what else should be extinct?  Sanfilippo Syndrome!

We also found the farm animal section and someone loved pretending to drive the tractor!

Little Buddy's always been a fan of water features and water falls at the zoos and other parks...

So once Ms. A arrived, we decided to take her to find a BIG waterfall!

It's always fun to do something new during our Minnesota adventures!

We also got to see our dear friends, the L family, while we were in town.  Their daughter, K, is in the same trial as Little Buddy, and it is always such a pleasure to see them!

K wasn't thrilled about trying to take a group picture though!

"What are you doing?"

Little Buddy and Ms. S.

We did manage to get Little Buddy, S, and her brother, T, up on the tire swing together!  They had so much fun!

The next day was surgery day.  Thankfully, all went well, but Little Buddy is always a bit grumpy after surgery day, so we took him to the other local zoo in an attempt to
distract him and wear him out for a good night's sleep.

A year ago this week, my sweet boy woke up with wide scared eyes in this same room after getting his port placed.  Today, this is all routine.

     

Checking out the giraffe statue with Ms. A before finding his favorite animal, the tiger!

All grumpy boys deserve some ice cream after surgery!

Heading to bed before infusion day tomorrow!  We will be increasing dosage and hoping for even better results!

Here is is!  Go, go increased dosage, go!

     

Lucky to get more playtime with K after a long day in the hospital!  

Our one year milestone is in the books and he's still smiling.  I couldn't be more proud of this brave boy.

     

Ready to head home but we're going to miss Ms. A!  She was such a huge help this week, to both Little Buddy and myself.

And now time for bed after a long trip!  But you know what makes this picture even more bittersweet?  It's his last picture as a five year old.  Tomorrow is his 6th birthday.  So many emotions for this momma.  Sometimes it's hard having his treatment anniversary right at his birthday, but I also know it is the best gift we can hope to give him.  We love you Little Buddy!

Tomorrow I am Momma to a six year old.  Wow.

Goodnight, 

LBM

Little Buddy's Momma