Top 10 Moments of 2015

Happy New Year!!

I want to start off the new year with a little recap of our family's big events of 2015. It will give me a chance to think about what I am really thankful for from the past year, and it will also give me an opportunity to share about Henry's latest and greatest milestone which I can't believe I haven't written about on the blog yet!! 

So here we go! Here's our top 10 of 2015!

1. Calvin's Palate Repair Surgery

A big deal for our "22qT" (Get it? Because 22q deletion.) This was his second surgery, the first being a hernia repair when he was 5 months old. In this surgery, he had one last hernia repaired, and he had his submucosal cleft palate repaired. (Check out the post from his surgery for the details.)

While it does not seem to have had an immediate impact on his speech, it was a necessary first step toward getting his palate and the surrounding anatomy as functional as possible. It's complicated. Every time I try to explain it I'm afraid I'm getting parts of it wrong... but basically there is likely at least one more surgery in his future to help him with his speech development, but this surgery had to happen first. And it went as well as could be expected. And we're so thankful to have had awesome doctors working on our little guy. 

2. Our Magical trip to Disneyland

I'm so glad we got this trip to Disneyland and California Adventure in before we said our goodbyes to the west coast. And I'm not even remotely sorry that the boys were so little that they won't remember it. James and I will remember it and we'll remember how happy it made them at the time and how much fun we had as a family. And we'll all relive it through the pictures! 

3. Camping with Toddlers

We went on 4 camping trips last year, bringing our total to 6 camping trips since the babies were born. We got to enjoy different parts of California's gorgeous landscape... redwoods, hills, lakes, the bay... we even got to visit an observatory and see planets and stars and stuff. Our little urban babies (at the time) got to get dirty and enjoy some nature. And by the 6th time around, I think we pretty much got the hang of it. On the Must Bring list: just-add-water pancake mix, lots of baby wipes, glow sticks, and a laid-back, I-don't-care-how-dirty-the-kids-get attitude. (Seriously, toddlers will get SO DIRTY. SO SO DIRTY.)

Here are my past posts about our camping trips:
China Camp
Little Basin
Fremont Peak

Anthony Chabot

4. Calvin Went to Preschool

I was so nervous about sending Calvin to preschool! But in all respects it turned out to be a good experience. His teachers were so kind and patient with him (and with me!). The class was very play-based. Calvin got to have his speech therapy one-on-one twice a week at school. And he loved going to school. In fact, I am feeling a little mom-guilt about the fact that we are not putting him into preschool again until the fall... For a few reasons, mainly financial, we are going to keep him tot-schoolin' with me at home until next school year. I know he will be excited when he gets to go to preschool again! In the meantime, I am going to enjoy having him at home for a few more months. And I know Henry is happy to have his brother around again too :) 

5. Mom and Dad did some Races

James and I are pretty proud of our fitness accomplishments of last year. We ran two 5Ks with City Beer Runs in the spring, and then I started training for the Giant Race 10K in August. Meanwhile, James was continuing to do his bike-train commute to San Jose, and once or twice a month he would bike the entire 60 miles from SF to SJ. This helped him train for the Marin Century race in which he rode a total of 135 miles, including biking to the race early in the morning!

James and I ran the Giant Race 10K together in August. I did not keep up with my running after that, but James' sisters have talked me into training for a half marathon in April... so I guess it's time to dust off my pink sneakers! (And buy some cold weather running gear because YIKES IT IS COLD UP IN HERE EARLY IN THE MORNING!! I miss CA weather already.)

6. Most Awesome Family Halloween Costume So Far

I am still so proud that we pulled this off. And I still can't believe how we lucked into these awesome pics at the zoo!

7. Mom and Dad do Invisalign

One of the benefits of James working for Align is that we were both able to begin Invisalign treatment. Invisalign is a way to straighten your teeth with clear trays called "aligners" instead of metal braces. I started in March of 2015 and James started in April. My teeth were pretty darn crooked... especially my two front teeth. One stuck out in front of the other and in some pictures it would look like I was missing a tooth! It is harder to tell from James' "before" pic why he needed Invisalign because it was his bottom teeth that were crooked and you can't see them when he smiles. 

March 2015

April 2015

December 2015

Now I'm about a month away from the end of my treatment and I'm so happy with the result! James' treatment got a little complicated and he's having some dental work done before he is able to finish straightening his teeth, so it may be a couple more months for him. Again, you can't tell from his smile!

8. Crazy Cross-Country Move

Probably the most life-changing event of last year: James took a job at Duke University and we made the leap into a new life here on the east coast. It was a decision that we put a lot of time and thought and prayer into. We are so grateful that we got the opportunity we were waiting for to be able to relocate and be closer to our parents and brothers and sisters. We are sad to be so far from our loved ones in California. We will miss all the places that became special to us there. But we really believe this was the right move for our family and we are happy to be here getting settled in North Carolina. So here's to the new year in our new home in our new state! 

9. Christmas Morning in our New Home

We even got to spend Christmas morning in our new house! The boys woke up to find dinosaur tracks and what appears to be a T Rex shadow on the walls of their bedroom! Then, there were gifts around the tree, treats in their stockings, and another big surprise in the playroom!!

Are these two the cutest or what?!? They were super adorable on Christmas morning and spending those special moments in our new house helped make it feel like home. 

OK, Drumroll Please........

10. Henry is Walking!!!

Yaaaaaaay! Hooray for Henry!!

This video cracks me up. Henry is toddling around like a drunken sailor... Calvin, who I assume is hamming it up for the camera, keeps assaulting Henry - acting like he is going in for a hug, but instead knocking poor wobbly Henry over... and their cousin Davis keeps trying to help Henry and get Calvin to make amends for pushing his brother down!

Henry took his first steps in November. His very first independent step was from his speech therapist, Monica, to me during speech group. Little by little, we saw him taking two... then three or four steps from one piece of furniture to another. In the beginning we could hardly get him to walk to or from one of us because he would just collapse and expect to be picked up. But by the end of November he could make it from one end of the living room to the other and he would walk from one person to another without begging to be carried. He was able to really show off at his last therapy session with our California PT, Will :)

That video is from Thanksgiving, and over the past month he has gotten stronger and sturdier. He doesn't crawl to get around anymore, he gets up and walks! He can't stand up from the floor without pulling on something to help him, but he will crawl over to the nearest wall or piece of furniture or person's legs and pull himself up to walk where he wants to go. He still stumbles and falls or gets tired and sits down fairly often. But his progress has been amazing and so heartening! We are so proud of our "Super Duper!" (Get it? Because Dup15q.)



It was a good year. So much to be thankful for.

And thank you, dear readers, for caring enough about our little family to read this blog :)
I hope you, too have much to be thankful for from 2015, and I wish you lots of love and blessings for the new year.

Peace.

A Walker in the Park

Check out this happy camper showing off his new reverse walker!!

Henry's physical therapist hooked him up with this walker to help Henry get some practice walking. I will admit, I was pretty skeptical about the idea of Henry using a walker because he was never successful in walking with the "push toys" that pre-walkers often use for practice. Like this wagon that Calvin used to push Henry around in ;)

Or this one, also given to us by Henry's PT.

With the push toys, Henry was always more interested in chewing on the handles or playing with the toys on the front than he was pushing them. We could never persuade him to really walk with a push toy at all. 

He cruises around the furniture really well, but cruising is moving sideways and he needs practice walking forward. We have been helping him walk by holding his hands or his hips. The reverse walker will allow him to be more independent as he works on walking and I'm very happy to report that he is much more willing to actually walk with it than he was with the push toys!

We brought his walker on our camping trip last weekend. Check him out in action! Steering is going to be a problem for a while, I think... But, hey, he's on the go! One step at a time, as the saying goes!

Wellness Wednesday: No News is Good News

Henry had his 2 year check up this week with his regular pediatrician. She said he looks great! His height and weight haven't changed too much since his last check-up, but he is growing and he's "on the chart" so she said he's doing fine. We went through the list of his medical spcialists, now mostly former medical specialists: 

Gastroenterology - cleared. 

ENT - cleared. 

Opthamology - two thumbs up. 

Pulmonology - got a check up on the calendar in a couple of months, still using the BiPAP. 

Neurology - only needs to see him once a year, we're good until spring.

He's all caught up on his immunizations, and that was it! See ya in 6 months! And while it's not nothing -  He is still followed by pulmonology and neurology, he still needs a BiPAP at night, and most kids see their pediatricians once a year, not twice - it is so much less medical stuff than we've dealt with in the past. 

Whew! How nice to have doctors appointments that end with, "You're good! Peace!" 

(OK, not her exact words :)) 

It was a good reminder to me to be grateful for those months when we were having medical appointments once or twice a week between the two kiddos and those days spent in the PICU after surgery, because that's how we got to be here at "You're good! Peace!" 

It's not to say that things are exactly quiet around here for Henry. He has a very full therapy schedule - 5 sessions a week, sometimes 6 - and it can feel exhausting to always have our days revolve around therapy times and doing what I can to make sure Henry is happy and ready to participate (ha.). But I will certainly take that kind of busy over a calendar full of medical appointments and hearing doctors tell us over and over again "try this" and "we'll see" and "come back in two weeks."

So with a grateful heart, I am happy to report that there is no news from Henry's 2 year check up :) 

Happy Wednesday!

Bye Bye Binky

If you have seen many photos of Henry, and especially if you have been around Henry in person, you may have noticed a certain accessory that he has very rarely been seen without...

Oh yes. I'm talking about the precious pacifier. 

He didn't always have it in his mouth, but we always kept it clipped to him so that he could have it on hand whenever he needed help calming down, or if he was having an oral sensory moment and needed something safe to chew on. Because of Henry's cognitive and sensory differences, we felt like he really needed that paci - not that he needed it constantly, but that when he did need it, he really really needed it. To be perfectly honest, I was often really friggin' thankful for that pacifier because I could not imagine how to get a hysterical Henry to calm down without it. And sometimes, the paci wasn't even enough calm him down. 

When we weaned Henry off of his baby bottles, I leaned heavily on using his pacifier to replace the comfort sucking from the bottle. It made bottle-weaning go really smoothly. When I started thinking about weaning Henry from his pacifier my first thought was something like, Heck No. Never. He can take it with him to Kindergarten. He can take it with him to high school!! Don't take my paci away!

Because of Henry's cognitive delay, I knew that we weren't going to be able to do anything like the "Binky Fairy" or passing down the pacis to a younger baby or anything that involved reasoning or explanation. I also knew that Henry would likely still have oral sensory needs and difficulty self-soothing well beyond a reasonable age of using a pacifier. So I figured the best thing would be to swap out the paci for another, more age-appropriate, source of comfort. There's another mom of a Dup15q kiddo who I follow on Instagram. I often see pics of her son, a couple of years older than Henry, wearing a necklace with a teething pendant. I've also seen older kids who wear "chewy" necklaces or carry small "chewy" toys around with them to help them deal with sensory or anxiety issues. So I thought, Brilliant! I'll just swap out the paci for a chewy and it'll be totally fine!

Over the past few months I started taking away Henry's pacifier little by little, trying to get to the point where he would only have it for naptime and bedtime. That never really happened because inevitably, at some point during the day he'd have a big fit and I'd give him the paci to try to calm him down (even though it didn't always work).

As summer started to wind down, I started feeling more serious about moving past the pacifier. So last week I went for it and finally made him go a full day without it. Instead of the paci on his little clip and ribbon, I replaced it with a teething pendant, per my brilliant plan.

Here's the thing. He hated it.

At first he ripped it off and threw it on the floor. A few times.

Then he basically ignored it until he was upset or tired, and when he would reach for what he thought was his paci and came up with the pendant instead, he would get even more upset and try to rip it off again. It was like that for about two days. I kept on clipping it to him in the hopes that he'd warm up to it, but instead he eventually started ignoring it entirely like it didn't exist.

So my attempt at replacing the paci was a bust. I even tried putting together a basket with a variety of toys and materials with different textures to see if there was anything that he really enjoyed biting or sucking on.

He had a lot of fun with it, but there was no clear winner. 

Those first two days were the hardest. The first No Binky Day also happened to be a day when we were out at a big picnic with Henry's speech therapy school and yes, of course he had a meltdown while we were there for all the other teachers and parents and kids to see. It wasn't the worst meltdown he's had, but he was pretty inconsolable and I was trying everything I could think of to calm him down. In the ergo, with the hood up, with the hood down, bouncing, walking, singing, swaying, offering him the stupid teething pendant, offering him water, offering him food... finally I put him in the stroller and walked around and that worked as long as he couldn't see me! I'm sure it was quite the show, but luckily Calvin was off playing and of all the audiences for a meltdown I can't really think of a better one than a bunch of therapists and other special needs parents with their kids!

I was really terrified that night to put him to bed without the pacifier, but it actually went miraculously fine. It has been a full week now and I have stopped making him wear the teething pendant, since it's clear he has no interest in it! He's sleeping fine without his pacifier and during most of the day he's perfectly happy without it. 

When he starts to feel upset and it's hard to console him, I do miss having the pacifier as a quick fix - or at least the illusion of a quick fix. But it wasn't truly reliable anyway, which kind of proves that he didn't need it anymore. I think it'll just be a learning process for us all as we get used to finding ways to help Henry calm himself without his pacifier. He is getting to be such a big boy after all!

I was so scared to take away his pacifier, especially when I saw that there was clearly not going to be an easy replacement for it! But I think we're past the hardest part, and I'm feeling relieved. One more hurdle crossed. One more milestone reached. This counts as a milestone right? I say yes. 

Anybody else want to share about the Bye Bye Binky Blues? What worked for your kids? 

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!

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!

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!!

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. ;)

Henry Wellness Update: New Year, New Skills!

Henry has been working hard and making a lot of progress over the past two months! Right around Christmas and New Year's, we took a couple of weeks off from all the boys' therapies and during that time a lot of exciting changes happened for Henry. It was really exciting to see his therapists again in
January and tell them all about how great he's doing :)


New Moves

In the fall, Henry started scooting around on his tummy and figured out how to push himself up into a sitting position from lying down. Now, at 18 months old, his arms and torso are strong enough to hold himself up on all fours!

He gets up on his hands and knees and rocks a bit, forward and back, and sometimes he'll give one big push with his knees and kind of slide forward onto his tummy :) Although he looks like he is ready to crawl, he isn't quite strong enough yet. The way his physical therapist explained it, he's strong enough to hold himself up on four points (two hands, two knees) - which is great! - but he needs to be strong enough to hold himself up on three points in order to crawl. He's got to be able to lift a knee and bring it forward, and that takes more tummy and arm and torso strength. But he's close! And working on it every day!

Henry reeeeaaaalllyyy wants to stand. He wants it bad. Every time we try to set him down to sit on the floor, he puts his feet down first and wants to stand with our help. He often pulls himself up onto his knees at our coffee table (train table) and in his crib. In his crib I have even seen him pull himself all the way up to standing! That only lasts a couple of seconds before he plops back down on his tushie :) But, when he gets up onto his knees at the train table, he can stay there long enough to reach for things on the table. And destroy parts of the train track, to Calvin's dismay... #henryzilla

New Noms

Henry is eating real food!! No more baby food for us!! Can I get an AMEN?!!

Cheerios, scrambled eggs, PB&J, pasta, chili, oatmeal, quinoa, green peas, black beans, broccoli... you name it!

Ok, not any anything. He doesn't really have enough teeth for crunchy stuff like raw veggies, so they have to be cooked, and meat is also a little too tough to chew unless it's ground, but I don't cook much meat anyway. The best part? He's not picky!! I cannot tell you how weird and amazing it is to have a child who will eat anything that I feed him without complaining. Wish my other kiddo would do that (I'm looking at you, Bean!). Henry has a big appetite too. He eats more than Calvin. His occupational therapist says that kids with low muscle tone have to use so much more energy to move their bodies, compared to typical kids, that they likely burn a lot more calories. So with all Henry's new moves, it's no wonder he eats so much!

He is learning how to feed himself, but by far I still have to feed him. He can feed himself things that are large enough for him to pick up, but soft enough to mush in his mouth once he gets it in there, because he hasn't figured out how to take bites from a large piece yet. Crackers and small pieces of cheese are perfect for him to feed himself. Fruits are hard because they're slippery. Cheerios are a little too small, but he sometimes manages to get one in without help :)

Henry has a history of difficulty with swallowing liquids. We've been using a thickener in his formula for almost a year now. But since his surgery he has been doing much better with swallowing and now he is able to take small sips of plain water from a spoon and even drink formula without thickener as long as it's in a bottle with a slow flow nipple (meaning that he can only take small sips, not big gulps).

Henry with his occupational therapist, Julia

 We have even started working on teaching him to drink from a cup. We use a special therapy cup that allows him to make the same shape with his mouth as he would with a regular open cup, but restricts the flow of the liquid so he is still taking small sips.

It's the same cup we used to teach Calvin and it came from Calvin's occupational therapist back when he was 13 months old. She called it a "dot cup" because of the three little holes that allow the liquid to flow out. I don't know if that's the real name for it...?

He is starting to look like such a big boy! 

As he is becoming more capable and more aware of his surroundings, communication is starting to be challenging. He doesn't have ways to tell us exactly what he wants or exactly what's wrong when he's upset, and his upsets aren't always the usual baby needs anymore (poopy, hungy, sleepy, ouchie). He had a speech evaluation recently and will likely start speech therapy soon, which will help both him and us have some guidance when it comes to communicating together. The therapist who came to do his evaluation gave me some helpful input on how to work with him on some communication skills. Simple commands like "come here," and "give me the ____" and helping him to start pointing/gesturing with his hands, for example. 

Henry and Calvin are also interacting and playing together more, and it's so sweet to see! They make up simple little baby games on their own. Like, Calvin will turn the lamp on and off and Henry will laugh and shout when the light comes on. They play peek-a-boo with pillows. They play a kind of fetching game where Calvin brings a toy to Henry in the high chair, Henry throws it on the floor, and Calvin brings it back. Over and over again with lots of laughing. They love to both get in Henry's crib and just kind of bounce around together :) Sometimes Calvin gets too rough with Henry. He's definitely figuring out the limits of what makes Henry laugh, and what makes Henry cry. And occasionally, he does seem to make his baby brother cry on purpose... but that's normal sibling/toddler stuff, right?? 

Hooray for Henry! :) Thanks for reading.

Any milestones or celebrations to share about your kiddos this week?