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Baby T's Story, Chapter 19- Recovery Pt. 3-Six months later...

8/14/12

What has Baby T been up to?

ALOT actually....

The big guy turned one last month.


We had a low-key celebration due to his tendency to get a bit antsy around big crowds.
I included honey sticks in the favor bags for the young guests (all were over 1 yr of course).
He received (and tasted) a birthday card from the
Infant Botulism Treatment and Prevention Program (thanks IBTPP Staff)


A rare (and tasty) card indeed!

Next week will mark the six month anniversary of Baby T being diagnosed with infant botulism.

IB Dad and I often remark on how "long ago" T's hospitalization feels.
Since our last update in April, there have only been 6 appointments!

Less appointments mean more time to enjoy summer.



Hanging out with sister

We took a family vacation, Baby T's first long car trip.



"Point and wait for explanation"

We visited the beach and he got sand in every nook and cranny.


Our summer has included a myriad of good times
though we're mainly celebrating our excellent health!

Baby T is morphing into a boy-toddler right before our eyes.
He is more determined to get into mischief and
is NOT easily distracted/redirected when he has a goal in mind.
He can go from cuddling to yanking our hair/pinching 
then back to cuddling; all within one breath.
We love how mischievous he has become.




Ironically, I ran into the ER dr who was stumped by T when we initially brought him in. He was happy to see our guy doing so well. He confessed that he was keeping tabs on him throughout his hospitalization and exclaimed how  Baby T's case has since been discussed often within the medical community.  He clarified that he wasn't pondering discharging us (as I had previously thought) but was genuinely stumped as to what was occurring with Baby T (but was certain it was not looking very good).  He expressed gratitude for the PICU staff who had an inkling that they were dealing with Infant Botulism in this instance.



Baby T saw his neurologist in May and she was impressed with his progress and doesn't need to see him again until he is walking (or 18 months, whichever comes first).


At his 1 year check up, T's pediatrician was happy to see how well he has recovered.

"I thought these bracelets were a thing of the past! Get it OFF"


We troubleshooted some ways to help T's constipation (which can last for a full year after diagnosis).
His weight gain stabilized after some minor losses
(as his pediatrician so eloquently stated, "he is no wilting flower")
Baby T continues to nurse frequently and dabbles in solid foods
but doesn't seem terribly interested in eating solids very often.


 Today Baby T stunned his physical therapist!
Not only is he crawling like a champ now...
He is on the VERGE of walking!!


"Look out world, here I come!"

He really turned on the charm for PT and while she sure does
love to see Baby T, she doesn't need to see us for 6 weeks!

There are times when I wrestle emotionally with what happened to him.
In communicating with other 'IB Moms' I've often been warned
of feeling these emotional aftershocks for some time.
The hand sanitizer at his dr's office takes me back to the days where
I was required to wash my hands even if just to caress his cheek.
I donated the frozen breastmilk that was pumped during his hospitalization
and while doing an inventory of the stash, certain dates took me back to the PICU pump room.
The sessions where: stress would zap my supply, in the early morning where I'd be exhausted but then shocked into reality and have trouble leaving his side, and when I would rush through in order to return to him as the paralysis wore off and his smiles returned.


I'm so grateful that he won't remember everything that he went through.

His bright eyes have always seemed to be reassuring me that everything is going to be just fine.
It feels so good to move beyond his first year.


And what an amazing year it was.