Super Excited

Super Excited

Just a quick update today, but much more will be coming this week. Jack was admitted to the hospital with rhinovirus that turned into pneumonia last week, but was discharged on Tuesday, and is doing very well. (I think we caught it pretty early). He’s asleep right now with NO oxygen support, meaning that his lungs are doing well on their own.

There are two exciting pieces of news. First, I was able to get an appointment for Jack at the Pediatric Mobility Lab at UD. You can read more here ( about the amazing work that this group does for children with limited mobility. I cannot wait to talk to them about Jack’s case and see what they may recommend for us to help him get mobile.

Also, just before CORP ended at Nemours, Jack had an electronic stimulation trial for his face and throat. Small electrodes were attached which would help to stimulate the muscles to contract. We learned that the therapy would be ineffective for treating Jack’s facial paralysis, however, when the electrodes were attached to Jacks throat, he was able to swallow 18 times within a single hour’s session.

This week, our job will be to figure out if there is any way that we can get Jack seen by a speech therapist who works with e-stim. The therapists at Nemours told us we need to have him receive therapy at least 3 times a week for it to be effective. We’re trying so hard to find a way.

…and that will be particularly hard, now that the boys’ amazing Nana has gone back to Connecticut. She was here for a whole two months longer than she’d bargained for, and trust me, she got more than she bargained for on this trip! There are no words to describe how grateful we are, and particularly how grateful the boys are to have had their Nana with them for this, the hardest year yet. The house doesn’t feel quite right without her….

I will post more after Jacks’s appointment this week! As always, thanks for following…


3 thoughts on “Super Excited

  1. Jill and Mike

    What exciting news about Jack – and no surprise. He always looks so alert and ready to take on any challenge in his photos. He will continue to amaze and inspire his medical caretakers and make his loving family proud – especially long distance Nana.
    Good luck with this new phase of your journey – if anyone can handle the challenges ahead the Grotti team can and we’ll be cheering them on (or doing anything else you can think of – just let us know!)
    Love to all,

    Jill and Mike

  2. Ruth Gaffey

    Nana is always available and will be back in a flash to help in any way:)
    It was a privilege and an honor to be entrusted with those beautiful boys this past year.
    Da and I will be back soon!
    Missing you all so much and is only been 22 hours!

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