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!

Tuesday, June 16, 2015

Stargazing at Fremont Peak

James and I took the babies on another camping trip this weekend. We seem to go to a new campground every time. This time it was Fremont Peak State Park up in the hills south of Gilroy. James picked this park for this particular weekend because it has an observatory which was open on Saturday night. Even without the powerful telescopes at the observatory, the stargazing from our hilltop campground was truly amazing.

We always do two nights on our camping trips because with a one night stay, it feels like we spend the same amount of time packing and unpacking our gear as we do actually enjoying the trip. Instead, we like to get to our campsite Friday night, spend the whole day Saturday, and then pack up after breakfast on Sunday.

Setting up camp

On Saturday we did a couple of little hikes/walks. James and Henry hiked up to the peak. Later, we all walked up to the observatory.

Walking up to the observatory

View from the peak

View from the peak.

Apparently it is black fly season. Man those bugs are annoying! So most of our time spent hanging out at the campsite was actually spent hanging out in the tent. But hey, hanging out in the tent is fun!



Is it me or does Henry look really mischievous here?


Showing off his new skill: clapping!

Campsite dinner: Pizzadillas! (Pizza Quesadillas... so easy and so yummy.)

After dinner we watched the sunset. Gorgeous views! And so foggy down below us!


Once it started getting dark, we walked back up to the observatory. They had three telescopes set up outside and the roof of the building was opened to reveal the very big telescope inside. In a classroom at the back of the building, astronomers gave a presentation but we didn't bring the babies back there so we didn't get to hear the talk. 

Since it was still pretty early in the evening, the telescopes were focused on the visible planets. We got to see amazing views of Saturn (rings and everything! and a few of it's moons!), Jupiter (we could even see it's stripes and four of it's moons), and Venus, which was so bright I felt blinded! Calvin gave it a try looking into the telescopes, but he couldn't get the hang of closing just one eye ;)

We didn't stay too late because of the kids. We went back to the campsite and put Henry to bed, but we let Calvin stay up long enough to sit by the campfire and enjoy a S'more.


There were lots of people gathered at the park with telescopes and fancy cameras to get a look and some photos of the night sky. After Calvin and I went to bed, James stayed up to take some photos himself. 


The Milky Way!

I'd say the night sky views and the observatory are the best things about this park. It was really special to have a chance to do some great stargazing and planetgazing.

The flies... I could have done without!


I think the new moon is actually tonight. Anybody going to do some stargazing?

I know a couple of other people who also went camping last weekend. How did your trips go? Did you get swarmed by black flies like we did?? Haha. I hope not! :)

Friday, June 12, 2015

Henry Wellness Update: Looking, Listening, and Pre-Language Skills

I feel sure that without Henry I would never have had the chance to appreciate the very subtle elements of emergent communication. Here are some of the ways that Henry, though still nonverbal, is showing us how much he understands and helping us to understand him.


Good looking, Henry!

At speech group, Henry is sitting in his special chair (with a buckle so he doesn't fall out) at a small table with other kids and their parents. His speech therapist, Monica, calls his name. Henry looks up, looks at her and makes eye contact. Monica cheers, "Good looking, Henry!" and holds up two toys. "Do you want the blue one or the red one?" she asks. Henry looks from her to each of the two toys and then grabs one with both his hand and his mouth. 

He didn't say blue or red, or even point to indicate a choice. But he looked at Monica when she spoke to him, and he looked at each toy before grabbing one. It's a tiny thing, but directing his gaze with intention shows that he understands what is going on. And when Monica says "Good looking!" she's not calling him handsome ;) She's letting him, and me, know that he did a good job of making eye contact at an appropriate time and focusing on her while she was talking to him. The therapists call it "shared attention."

Sometimes Henry is too distracted to pay attention when someone is talking to him. Sometimes his other sensory needs get in the way. Another day at speech group, he just couldn't seem to stop biting the table long enough to look at Monica and listen to her when it was his turn. When that happens, it's frustrating. For us the parents and therapists, and possibly for him. But more and more we see him becoming able to do things more intentionally and less impulsively. More and more we see that he is able to pay attention to someone speaking to him and create that shared attention.

There are other ways in which Henry's gaze shows us what he understands. One of his speech goals is to respond to "distal pointing," or looking at something far away when someone else points it out to him. So if I say "Look, Henry, it's Daddy!" and James is across the room, the goal is for him to follow my gaze or my gesture and focus his attention on his daddy. He does this best with people. I think it's because the names for people are more familiar to him than the names for objects. If I say, "Look at the airplane!" and point up into the sky, he generally won't look up. Because maybe "airplane" doesn't mean much to him yet. But this speech goal isn't really about words he does or doesn't understand, it's about knowing that if someone says "Look over there!" and points, then you're supposed to look where they're pointing. And occasionally he does it... but mostly we're still working on it.


Sing Me a Song

Henry sits in his high chair at home with his other speech therapist, Holly. Holly is doing songs and rhymes with him. "Open... shut them. Open... shut them." Holly sings slowly. When she says "open," she holds Henry's hands apart. When she says "shut," she brings his hands together as though he is clapping. "Give a little clap, clap, clap!" she sings and she helps him clap his hands three times. "Open... " she repeats, pulling his hands apart - but then she pauses. She waits and watches him. He waits and watches her, eyes wide, anticipating the next part. A moment passes and then Henry pulls slightly on Holly's hands. It's a tiny movement, the slightest pressure, but that, combined with the expectant look on his face, shows that he knows what comes next. Holly responds with the next part of the rhyme, and a nod to let him know he got it right. "Shut them!" and helps Henry bring his hands together. 

Henry has really been interested in songs and rhymes lately, and I think it's because he is just starting to understand them. He is starting to be able to follow along to the words, the rhythm, and the gestures. In the past, he wouldn't really attend to songs and hand motions like he does now. Now, he is really watching and listening. He's starting to get it. I feel like it won't be long before he can do some of the hand motions himself!

His favorites are "If You're Happy and you Know it" and "Open, Shut Them."


Let go! 

At breakfast, Henry has snatched his spoon out of my hand and is chewing on the handle. I need it back to feed him another bite. "Henry, give me!" I say, and I hold out my hand. He takes the spoon out of his mouth and looks at me out of the corner of his eye with a sly smile. He continues to clutch the spoon and waves it around. "Give me!" I say, still holding my hand out. Henry looks at my hand, then back at my face. He smiles broadly. Finally he holds out the spoon over my outstretched hand, but his chubby little fingers are still holding tight. "Thank you, Henry! Now let go!" I say. But he doesn't, and I pry his fingers open as I say again, "Let go. Thank you."

Henry is learning to follow some simple directions. "Give me," "let go," "come here," "put in" and "look," to list the ones that come up most often. He definitely understands "give me," but he's so funny about it! He almost always does this thing where it's like he's trying to be sneaky and not hand it over even though he knows he's supposed to! And then when he does hand it over, it's like his hand doesn't get the message and he can't figure out how to loosen his death-grip on the object. The same thing happens with "put in" when we're putting toys in a bin. He'll finally hold the toy over the bin, but he still has to figure out the part where he's supposed to open his hand and let it drop in!

It's been recommended to me to keep the commands short and simple: just one or two words. So I don't say, "Give me the spoon please." I'll usually just say "Give me" or something like "Give me spoon" with a one-word name for the desired object.


More More More!

Henry sits in his high chair during lunch. I tear off a small bite of PB&J and put it on his tray. He scoops it up with one hand and pushes it into his mouth. Since he's had a few bites already and I know he's not famished, I pause before offering him another bite. "More?" I ask. "Do you want mmmooore?" I exaggerate the word for emphasis. Henry says nothing, but bounces in his chair and claws the tray like he is picking up invisible bites. I take his hands and help him make the ASL sign for "more" and I say it again, "Mmmooore!" Then I give him another bite. 

Calvin is asking for something. I turn away from Henry to help Calvin with his lunch. After a few moments I hear Henry softly saying, "Mmmoh! Moh! Moh!" I turn back to him with raised eyebrows. "More? Oh! You want more! Good talking, Henry!" I cheer as I place another bite of sandwich on his tray. 

This is the closest thing Henry has to a first word! Not "Mama" or "Dada." Nope. For this guy, food is apparently the biggest motivator. He only says it for food, though we use the word and sign "more" for many other things. He won't say it on command, and he doesn't say it every time. It usually comes out in scenarios like this one where I've turned my attention away from him and he's ready for another bite.

He does a lot of babbling, and sometimes his babbling sounds very much like words but it's hard to be sure. He is even starting to imitate sounds. Here's a video of Holly playing with Henry and using bouncing to encourage him to vocalize.


Henry's pre-verbal skills give us a glimpse at how his cognition is developing. It looks like he's becoming more able to focus on specific things. He seems to be recognizing patterns, like patterns in rhymes and songs. He's starting to show that he remembers things. He's starting to show that he understands things we say. He shows us his sense of humor :)

There's some overlap between his speech therapy and his occupational therapy. Hand motions in songs and rhymes, using gestures and pointing to communicate, and that business about letting go of the spoon!

It has been eye-opening to realize that there are so many elements that play a role in communication, and it is so amazing to see them unfold little by little for Henry. It does seem a little strange that it's possible for him to have made so much progress in speech therapy without any real words or signs, but these pre-verbal skills that he's developing have already made a big change in his ability to communicate with us.


Holly and Monica, if you are reading this, first of all THANK YOU so much for all the support for Henry and for me. It is wonderful to get to work with you! Also, if there's anything here that I haven't got quite right, please feel free to correct me! I'm learning as we go.


More updates on Henry's development are in the works. One about his motor skill development, and probably one more about his eating/feeding.


Thanks for reading!!


Tuesday, June 9, 2015

Permission to Shake it Off

Henry's second birthday is a little more than a month away. It will be here before we know it! And I've begun writing some wellness updates to share about how much he is doing and learning. I set out to write one post that would include his progress with language, motor skills, and feeding. But I quickly realized I had so much to say about it that it really needs to be a series of posts instead of one terribly long one!

How exciting that there's so much to say about Henry's progress!

As I was working on the first of these wellness updates, I felt compelled to explain that the things he is learning, although new and exciting for him, are things that typical babies learn and do much earlier. I felt compelled to remind people that all his progress is still very delayed and slow-going compared to other kids. Almost as if to say, We're so excited! But actually, let's not get too excited. Sorry.

Like Debbie Downer.

What is up with that? 

That is totally unnecessary.

Why would I want to take away from the joy of sharing how Henry has grown? Why can't I just let myself be proud of how far he has come without insisting on a disclaimer about how far he is behind the norm? Why do I feel like it's important to remind people that he's different? 

If you read this blog, you know that Henry and Calvin have developmental differences caused by their chromosomes. I don't have to say it over and over again. It is who they are and I don't have to apologize for it or feel pitiable for it or hold back from celebrating when there's something to celebrate! Even if they had the expected number of chromosomes, their journey is their own. There would still be ups and down, struggles and victories.  

I think part of it comes from a desire to be humble as I'm bragging about my kids, but in a way I feel like I'm disrespecting them if I'm saying how far they've come and how far behind they are in the same breath. They don't deserve that. They deserve praise for how hard they've worked and how much they've learned and how far they've come. With no disclaimers. And no Debbie Downer.

That guilt, that worry, that fear... whatever it is that makes me feel like I need to temper my enthusiasm about Henry or Calvin's development, or wear their "differences" like a weight around my neck... That is something I do not need. And Calvin and Henry definitely don't need me carrying that stuff around.

So I'm giving myself permission to shake it off. 




It creeps up on me. And sometimes I need a reminder that it's ok to let it go. 




Thank you, Taylor and Elsa. 

Once I get those songs out of my head, I will get back to writing those wellness updates! Because I do have happy and exciting things to share about Henry! And he deserves uninhibited celebration. 


Other parents, does this kind of thing ever get you down? Or do I sound crazy?

Well, if this resonates with you at all, I give you permission to shake it off, too. ;)

Tuesday, June 2, 2015

Monterey Bay Aquarium Pics

After our awesome and magical Disneyland adventure, we just weren't quite ready to go back to real life right away. So we decided to extend our vacay a little and head over to Monterey for a night on our way back north so that we could take Calvin and Henry to the Monterey Bay Aquarium! 

This aquarium is really awesome. The best part for our family was that there were so many interactive exhibits for kiddos and Calvin was actually tall enough to do most of them! There's also a super fun play area for little ones with stuff that even Henry, a non-walking kiddo, could enjoy. Plus, the exhibits are just amazing! Our favorites were two of the special exhibits there right now, the Jellies Experience, all about sea jellies; and Tentacles, which featured octopuses, squid, and cuttlefishes. 






Looking out over the bay

Calvin found Nemo! And Dory! :)







This sea otter is eating shrimp that have been frozen into a block of ice.


Haha it looks like we are winking! It was really sunny!




Upside-down Sea Jellies






They were a little excited about the penguins.
Sensory play area with different textures and sounds to explore

Toddler water play area


These two sure do love an aquarium! And Monterey Bay Aquarium did not disappoint!