Peaks+Valleys: a Hank update.

 

This blog entry will be a grab-bag of emotion. While I couldn't be happier to share a few of these things,  for others I simply have a pit in my stomach at the thought of writing these words and solidifying their truths.

 

Here goes nothing.

 

A little while ago, about 15 months to be exact, we went on to the wait list at Connecticut Children's Medical Center department of Developmental Pediatrics. The current waitlist is about 2 years, so I won't complain about the 15 month thing. The appointment itself went fine and Hank had fun (it was all play based.) The results, however, were less than ideal. There is a referral being done to a genetic neurologists for "syndrome testing" and also to follow up on a large concern that Hank may be having nightly seizures. Some kids get all the luck, right?

 

But why stop at seizures and syndromes, surely there is still plenty more we can throw at him?

 

While we still await the official summary, the spoken prognosis given to us for Hank's speech is extremely small and possibly non-existent. They have recommended fitting Hank with an AAC (augmentative and alternative communication) device. The goal is to provide him with a form of expressing all of those incredible thoughts running around in his mind.

 

And I fully support this.

And I am genuinely excited at the prospect of having him be able to converse

and to ease the frustration he feels daily.

 

However to get to that place, I still have to grieve some. Hearing "Mama" is one of the greatest joys I have experienced so far in being Hank's mama and I need to accept that may just be all he verbalizes to me in his own voice. I will still hope, pray, and wish that he is able to speak one day, but I will also prepare myself for the potential realities.

 

So for now, it is just hard. It is a lot more money, a lot more therapy, and a lot more battles ahead to get to this next phase. But I know us and we will find a way to make this okay.

 

I do want to end this on a positive note, because although this last week has brought some seriously heavy crap our way, it has also been a big week for Hank with some good things!

 

Hank no longer takes a pacifier. We were waiting for our trip to end and for the routine to settle back in before gently pushing this and thankfully, he handled it all much smoother than we had expected!

 

Want to know something even better?!

 

Hank is in underwear full-time! I will give credit much more to Brandon for this because I had no motivation to really dedicate to this. Hank + Daddy had a whole day of success the first day and the momentum just hasn't stopped. 5 days later and only 2 small misses! We have done outings, car rides, and even naps, and all dry!

Thank you, pretzels, for being his motivator. (Yes, true story.)

 

So there it is. A week with quite the peaks and valleys. At least there is a balance, right?

 

Thanks for reading, and for the good thoughts headed his way :)

 

Safe Travels,

Amanda