Back at it: a Nolan Update

Hey friends!  Don’t worry, I didn’t forget about you!  It’s been a busy little while for us, so I wanted to give you a quick update on everything that’s been going on.

First, I got a new job!  It was a transfer to the hospital and it’s been a great opportunity to be able to work with our patients.  I think my experience with Nolan is going to be a great asset there.

Nolan has been doing REALLY well: his weight has been creeping up ever so slowly (he’s over 19 pounds now) and a lot of the physical therapy that he hates so much has been paying off.  In March he finally began crawling!  At first he would do a ton of crying and whining whenever he would craw, but then he would crawl a little further and further each day.  Then I think it occurred to him that that “annoying” crawling was getting him places.  Then he was OFF.  The kid is all over the place!

The next step was pulling up and standing to coast along furniture.  He actually took to this rather quickly and is a pro:

NolanCoasting

As long as he’s holding onto something, he’s a walking fool.  If you want to see a video of him using his little walker, go to Nolan’s Facebook page.  So now that he can coast, the next step is balancing and walking on his own.  He’s actually doing well with that too: physical therapy is now working on helping him stand on his own, then holding the back of his shirt, to show him he can stand and walk without anyone holding his hands.  So far, so good…I imagine he’ll be walking real soon!

Feeding is going well with him too, especially lately.  In a usual week, we’d be lucky to get Nolan to have a couple spoonfuls by mouth…in the whole week.  And a lot of it would be through trickery.  Lately, though, he’s been much more interested in eating.  He’ll sit at dinner and eat 5 or more spoonfuls of food in one sitting.  And he’s been doing this practically every day.  I know 5 bites of food isn’t a lot, and he still has a long way to go, but compared to 2 bites a week (or sometimes a month), this is a major win.  I’m hoping he keeps it up: it would mean he’s closer and closer to getting rid of that G-Tube.

Finally, after like a billion ear infections, Nolan finally had some ear tubes put in.  I think it’s made a huge difference: he’s been less fussy, less sick…all is good!

Still a lot of work to do on our little guy: he’s still going to physical therapy 2 times a week and speech therapy 2 times a week and will soon start occupational therapy…but things are paying off, and I think the rest of this year is going to be a great one for him!

NolanHappyBirthday

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on May 17, 2014, in life and tagged , , , , . Bookmark the permalink. 2 Comments.

  1. Found your blog and am looking forward to following it. I’m a soon to be Dad of a HRHS girl from China, and appreciate finding a another Dad on a similar journey.

    • Hey Mark,

      Thanks for reading! I hope you can find some good info here and good support. If you ever have questions, feel free to ask!

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