Naaman's Journal

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COVID-cleared for procedure 6/4/20

He can have all the snacks he wants after that! Poor little bud had his third (or fourth, I lost track) COVID test today at a drive-through testing site in New Haven. It’s never good but he was particularly angry at this one.  He called the nurse a “stupid blockhead” which is about the nastiest thing he knows how to say, so you know he was mad! He got to watch Bambi on the tablet,

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PT teletherapy and Cycle 5 coming up

Hi, Team Naaman.  It’s been quiet on the blog but no news is good news sometimes, right?  Physical Therapy at home For the time being Naaman will participate in therapy sessions at home.  Teletherapy with a three year-old is about as interesting as you imagine, but our PT is really engaging. Hershey kisses and an enthusiastic big sister also help. Cycle Five starting soon On Thursday, Naaman is scheduled to start Cycle Five of long-term

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Pulmonary Telehealth Visit Today

Happy Memorial Day Weekend, Team Naaman. Before you’re alarmed by the post title, rest assured this was a planned visit with the pulmonary doctor.  Cheeky’s had a string of respiratory issues from respiratory distress during sedation to these little cold viruses turning into ER trips for oxygen.  The visit went really well and the pulmonary specialist says he’s got mild asthma. All we need to do is continue his daily inhaler and follow up in a

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Finishing up Cycle 4

In case you missed it, May the Fourth be with you. Leia and Han enjoyed a day of Star Wars foods and game and movies.  Why have tater tots when you can have Vader’s taters? (Yes, superfans, our Leia and Han got their own light sabers.) Chemo in clinic Thursday While Naaman has daily oral chemo at home, he still has IV chemo monthly in clinic.  Things went very smoothly and we were there just

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Iron Man’s “port”

No news is good news, Team Naaman. Cheeky is breathing well at home and no fevers in a week! He has a telehealth appointment with respiratory in a few weeks to hopefully figure out a plan for why he keeps having respiratory events with his colds. Everyone knows how much Naaman loves the Avengers, and has been hooked on Hulk and Captain America mostly.  Iron Man has been taking over as of late, and for

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ER again

Last night Naaman had another ER visit. The same story as two weeks prior: thick snot, ear/eye gunk, cough, low-grade fever all day and fever spike late in the day. We saw the same staff as two weeks ago (which is actually great because they know him and know his story by now), but this time we got away without a COVID test and oxygen. Naaman has an ear infection and still has bronchiolitis, which

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Resilience Gives Instagram Takeover!

Our friend Jake at Resilience Gives let Naaman and Nadine “take over” their Instagram for the day! Check them out here: IG story For any non-Gramming members of Team Naaman, don’t fret. You can still follow the link and check out Resilience Gives. Be sure to click on all the cuteness on their page. Team Reese, Team Angel and Team Emma! Enjoy. XX

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Make-A-Wish comes to Naaman’s house

It’s time we let you in on a little secret… Naaman was granted a wish! SeaWorld and Disney’s Animal Kingdom for all the penguin and animal fun a three-year old can get.  Only his wish was postponed before we could even announce it. No need to be sad (because he doesn’t even know about the wish-granting yet!) because Make-A-Wish ensured he and Nadine had a treat come right to their doorstep this week.  A parade

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