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Thursday, July 23, 2015

Henry's Sweet Second Birthday

Henry turned 2!! Woo hoo!!


It's been a big year for our little guy. A year ago he was still struggling with severe reflux and crazy severe sleep apnea, which both turned out to be related to respiratory difficulties ultimately caused by his hypotonia (to the best of my understanding). On his first birthday, Henry was juuuust baaaarely starting to sit on his own, and only for a few seconds! He was still struggling to eat solid foods and still depended on formula from a bottle for most of his nutrition. I remember filling a cupcake wrapper with whipped cream and sticking a birthday candle in it for him because we knew he wouldn't be able to eat a cupcake :)

Throwback to Henry's "beary" first birthday

The turning point for him really was the surgery he had last October. As nerve-wracking as it was to send my littlest into a surgical procedure, the progress he has made since the surgery feels miraculous. With his breathing improved, the reflux disappeared. He stopped aspirating liquids and after a few months we were able to stop using thickener in his formula. His feeding improved very quickly and by Christmas he was able to eat regular table foods. By spring he had learned how to drink from a straw and an open cup and we were able to wean him off of formula and baby bottles (Hallelujah!!). Now, he is a great eater. He continues to work with a feeding therapist as he slowly learns to feed himself.

Not only did his feeding improve, but over the following months he made leaps and bounds in motor development. Soon after the surgery he was sitting stronger and longer and he started belly crawling - he was finally mobile! By early spring he was crawling on hands and knees and pulling up to stand, and by late spring he was cruising circles around the house! I recently wrote this post: Motor Moves about Henry's motor development.

His cognitive development really began to shine this year as well. Henry started speech therapy in April and for the first time, we felt like we could really see glimpses of what he understood and what he was trying to tell us. Here's the recent update all about Henry's language development: Looking, Listening and Pre-Language Skills.

This year has felt like Henry's chance to finally get to the business of being a kid: playing, learning, growing. To start showing us his curious and energetic personality. To start discovering how to interact with his world and the people lucky enough to be a part of it.

As he grows and develops, the things that are challenging for him and for us, his parents, also change. But it's all part of the big picture of Henry having the chance to grow into the kid he will be. And I'm grateful for that.



Here's how we celebrated Henry's 2nd birthday!

Of course, we started off the day (bright and early!) with birthday breakfast! James made waffles and we covered Henry's with whipped cream and sprinkles and topped it with a candle.



We spent the day at one of our favorite places - the zoo!



On the zoo train

It's my party and I'll nap if I want to ;)

Calvin went around poking all the animals in the sculpture garden with a stick. 



That afternoon our cousins came over for pizza and cupcakes. My mom made her famous Black Bottom Cupcakes (chocolate cupcakes with a cream cheese and chocolate chip filling) for Henry's birthday. When it was finally time for cupcakes, the birthday boy was just about ready for bed! But he perked up when he got to eat one :)


Hooray for Henry! Our big 2-year-old boy!


Wednesday, July 1, 2015

Henry Wellness Update: Motor Moves

Thinking about how to write about Henry's motor development without it being super boring was bumming me out. (Which is why it has taken me so long to put this post together!) So I decided it would be more fun to share a few videos that show off his moves.






In this video, Henry is with his occupational therapist (OT), Julia. Putting items into a container is both a speech goal and an OT goal for him. He knows what to do, but he's got to open his hand and drop it! Hard to say if his hand is not getting the message, or if he just doesn't want to put the toy in... At this point, I suspect it's the latter! He sure liked that blue block!

Even though he never does put that blue one, in, I like how you can see him manipulate it with his hands in this video. He turns it over and over, uses his fingers and wrists, passes it from one hand to the other, waves it around and shakes it. That hand and wrist control is important as he learns practical skills like the taking out/putting in that he's working on here, as well as self-feeding skills like using a spoon.







If you're happy and you know it... CLAP YOUR HANDS, KID!! What a joker! I swear he can clap at the right time in this song. He can. I've seen it! He also raises his arms up on the "Hooray" part. I swear! He does! But of course I couldn't get it on video! Well, it still shows he can clap and it cracks me up every time I watch it! Hope you got a good laugh too! :)

Clapping is a big milestone because it shows that he's got the motor control of his hands and arms, as well as the coordination needed, to bring his hands together. For Henry, it also reveals something about his receptive language because he has learned verbal cues for when to clap. He claps when we cheer "Yaaaay!" and he claps when we sing "If You're Happy..." (even if it's not at the right time every time!). 

Henry is also making progress with waving for "Hello" and "Bye Bye," and he is using a couple of ASL signs (or his version of them anyway!). He puts his hand to his mouth to ask for food, and he does a sort of clap, bringing his hands together, to say "more." More overlap between speech and OT, and all really important progress for Henry's communication and coordination. 





Henry has been crawling for several months now, though at the moment he seems to prefer cruising as a way to get around. But I wanted to include a video of him crawling because his crawling development is really important for him learning to walk one day. He did "belly crawling" for a few months before he got strong enough to lift that belly off the floor and crawl on hands and knees. Now you can see him move pretty quickly up on his hands and knees. The alternating motion of his hands and his legs is related to learning how to take steps one day, and holding himself up on his hands with his belly off the ground helps him strengthen his abdominal muscles which he will also need in order to be able to stand and walk on his own.

(And James' backpack is stinky because he wears it on his commute bike rides every day and it gets all sweaty. He does wash it, though. In case you were worried.)





I took the boys to the zoo last week and it was a whole new experience with Henry now able to stand and cruise along the fences! It was a lot more fun! I'm not sure how much Henry looked at the actual animals, but he sure had fun with the fences! 

He's getting really good at cruising (walking sideways while holding on)! He doesn't put much weight on the fence/shelf/whatever he's holding on to. He just needs something for balance. He's also able to stand while holding on with just one hand for balance. His orthotics really help with these things, though he is pretty stable even barefoot. The shoes give him a bigger base for support, and the orthotics help him keep his joints aligned. 






In these last two videos, Henry is walking with Will, our new PT. Our former PT, Krystyna, moved away. I was really sad to lose her as Henry's therapist, but we are enjoying working with Will. As you can see, walking forward is a lot harder for Henry than walking sideways (what I call cruising). It takes more core strength, which he's still building up. Helping him practice walking like this can be frustrating for me because he is such a noodle! And he isn't super motivated to do it - he'd much rather turn around and have you pick him up, or get down on the floor and crawl, which of course would get him where he's going much faster! 

Will has Henry do some strengthening exercises - almost like baby sit-ups and squats - to help him work on the muscles he needs to better support himself. Henry also has a push toy that he can use to practice walking, though he is not a huge fan of it. He prefers to push our little Ikea end table across the room. 

In general, Henry's movements have become more controlled and his stability with sitting and standing (assisted standing) have really improved over the past few months. He's still got a ways to go before he'll be walking, but I'm so proud of the progress he is making! One of his therapists (sorry, I can't remember which one!) commented that it helps that he's such an active kiddo - always on the go, always moving around the room. For a kid with low muscle tone, all that activity helps him build that strength that he needs and gives him a chance to work on coordinating his movements. 

Again, to Henry's therapists - if you guys are reading this post, first, I can't thank you enough for your work with Henry! And second, if any of this doesn't sound quite right, please feel free to help me out! It is all a big learning process for me. 


I'll have one more wellness update on Henry sometime in the next couple of weeks, about his eating/feeding progress. Hopefully I'll get it posted before his birthday, but his birthday is fast approaching!