Wellness Wednesday: A Sniffly, Feverish Fall

I was thinking about Halloween last year and the year before and I realized that October has not been a great month for health and wellness around here for the past couple of years! Last year, Henry had his surgery in early October, though he was all recovered by Halloween. The year before that, when Henry was just a teeny baby, James, Calvin & I all got the stomach flu the weekend before Halloween and it was just as awful as you can imagine!! **Shudder**

This year, we started the month off with runny noses - first Henry, then Calvin. So Henry missed some therapies because I never want to bring him to clinic with any kind of sick germs. He puts his mouth on everything, and in a place with lots of other special needs kids you never know what kind of medical/immunological stuff they've got going on. I don't want to make a medically fragile kid sick with my kid's germs! Since Henry and Calvin always seem to take turns being sick, the runny noses lasted at least two weeks. But happily the boys didn't have any other symptoms and seemed to be feeling fine. I let Calvin take his runny nose to school. At least he doesn't put stuff in his mouth anymore ;)

So first runny noses, and now fever! I mentioned on Instagram and Facebook that Calvin was sick all last week. He woke up Monday morning with a fever and the fever lasted 3 days, followed up by a hacking cough that lasted another 3 days. He missed a whole week of preschool. 

That whole week, Henry was fine but I had to cancel some of his therapy appointments again because I would have had to bring Calvin and all his germs along. Being stuck at home with Henry and sick Calvin was a total drag. We were cooped up in the house for a week and it made me feel kinda lazy and restless. It's partly my own fault. I should have taken them out for walks or found at least some way to get us out of the house!

By this past Monday morning, Calvin was all better, he'd been fine all day Sunday as well, and he and I were both really happy that he was going to be able to go back to school! Henry had a therapy appointment, I had errands to run, I was showered and dressed and genuinely looking forward to getting back to our usual busy schedule. And as I was standing in the line of parents to sign Calvin in at school, I had Henry in the Ergo and I leaned my head down and kissed his forehead... and it was HOT. Of course. Henry had caught Calvin's fever a whole week later. 

So here we are. Another sick kid lying around feeling pitiful. Canceling therapy appointments again. At least Calvin's in school, though. But why do they have to take turns getting sick??? I feel like I'd rather just get it over with and have them sick at the same time! Though, I realize that taking care of two kids feeling pitiful is probably really tough. 

Parents with little kids, does this happen to your family? Do your kids take turns getting sick or do they get sick at the same time? And does it drive you crazy like it does me???

At least I'm not sick. *Knocks on wood.* 

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!

Hot Yoga... More Like Snot Yoga

I spent the summer (sorta) training for the Giant Race 10k. Now that the race is over, I'm trying to get back into my yoga practice and I'm trying to balance it with keeping up my running. 

In the spring, I was doing Bikram yoga and this month I switched to a heated vinyasa studio. I like hot yoga because I feel like it helps me really get a good stretch through my muscles and it feels relaxing. And challenging. Don't get me wrong, heated vinyasa is no joke. 

One small hitch in my fitness game is that the entire family came down with a cold. It started with the boys and their runny noses. Then James got the worst of it and had to take a sick day. I also had a terrible runny nose, but I was in denial about it so while James was home on his sick day I decided to take advantage of that and go to an afternoon yoga class. Because moms don't get sick, right? Right, guys??

Anyway, I didn't bring my mat towel, and I don't bring a face towel because I'm used to Bikram where they teach you not to wipe away your sweat. So basically I had nothing to save me when my nose started running halfway through class. Fun fact: hot yoga will open up not only your pores, but also your sinuses! And I knew this, but I was in such denial about having a cold that I forgot to grab something to wipe my nose with during class. (I can't be sick. Moms don't get sick. I feel fine. *Sniff*)

So not only am I sweating and stretching, I'm also sniffling and trying to keep breathing through my nose without snot-rocketing onto my mat which is already getting slippery with sweat - should've brought that darn mat towel! By the end of class I'm a hot yoga mess. Snot is mixing with the sweat on my face, and I'm trying to discreetly transfer some of the slime to my bare arm because my stretchy yoga top is too tight to reach my face. So gross, y'all. I probably should have just sucked it up and left my mat in the middle of class to blow my nose. But I kept thinking, it'll be fine! I'm sure it'll stop any second now... 'Cause I'm not even sick! 

So stubborn. 

And the moral of this cautionary tale is... always bring your mat towel to hot yoga! #facepalm

Or, if you have a cold, go ahead and admit that you're sick and stay home with a cup of tea instead! While your toddlers wipe their snotty noses on your pants. If you're as lucky as me, anyway. #butmomsdontgetsick

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 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!!

Calvin Wellness Update: Post Palate Repair and On the Mend

I'm very happy to report that Calvin's surgery last week went well and that he seems to be doing great!

Everything went very smoothly with his two procedures. As expected, his hernia repair was a quick fix (again, this was a hernia resulting from a birth "defect," not from an injury). They made a small incision above his little outie belly button, put in a scope to find the tiny hole, and put in a couple of stitches to close it up. No stitches on his belly, just that surgical super-glue stuff. For his palate repair, the plastic surgeons opened up his soft palate to reveal the underlying muscles. Then they attached the muscles to each other as they are supposed to be. So, to my understanding, he's got stitches to hold the muscles together so that they can heal into the correct shape, and stitches to close up the surface of his soft palate (the part you can see if you look at the back of his mouth). Everything should heal up in a couple of weeks and the stitches will dissolve. For now, he's on a strict soft foods diet because anything hard could poke into his stitches. We will see his plastic surgeon for a follow up next week.

Pre-surgery, waiting to be taken to the OR (Watching Finding Nemo)

Caring for a kiddo straight out of the OR is so tough. Definitely up there with the hardest and scariest experiences for me as a mom. This was the third time, and it's not something that has gotten easier even with an idea of what to expect. Each time, the babies were just so vulnerable and disoriented. The anesthesia gives them nausea. After Henry's tonsillectomy and Calvin's palate repair, they both drooled some blood. At first they were barely awake, and then as they came around they became extremely upset and agitated. They were hard to console. They fought the nurses and tried to pull at their wires and tubes. They cried and cried until they fell asleep, calmed by pain medicine. I am sure they were frightened. I was frightened. I knew they were going to be OK. I believed that the hard part would pass. But it was so painful to see my boys in that state.

I don't mean to diminish the fact that we are very thankful for capable doctors and successful surgeries. I'm asking myself why it feels important to write about that part of the experience, the hardest part for me. Probably the hardest part for them, though they aren't able to tell for themselves. It feels a little dishonest to leave it out or gloss over it. I think it's important to focus on positive things and to give thanks for every blessing. But part of me also feels like it is important to acknowledge the hard parts of the journey, the scary, ugly moments that we have to go through to get to the happy endings.

A couple of hours after surgery, snuggling and sleeping.

The only bad news from the doctors was that the muscles in Calvin's palate are very thin. As one of his surgeons put it, "there's not much muscle there." This means they may never be strong enough to function well, despite being attached properly. If, over another year or two, it seems like he's not improving it will mean another surgery. Meanwhile, he still has his other articulation difficulties not related to his palate (learning to use his lips & tongue to produce certain sounds that are hard for him). There are a few components to helping Calvin develop "normal" speech and his palate muscles are just one piece of the puzzle. We've still got a lot of hard work and speech therapy ahead, but I'm thankful to have this surgery piece behind us. Even if it isn't his last surgery, it was still an important step.

The following morning, watching Finding Nemo again!

Calvin's energy actually returned very quickly! Just the day after surgery he was playing around in his hospital crib with his brother.

The pain meds made a huge difference for the first couple of days, though we were conservative with medicating him. Once we were home, we slowly backed off on the Tylenol and now he doesn't seem to need it at all.

Yummy ice cream treat after leaving the hospital :)

I thought the "soft foods" diet would be a big hit, but Calvin has not been too impressed with our attempts to keep him nourished on smoothies and yogurt :/ Of course, he loved the pudding and Jell-o at the Easter party yesterday.

He's running around and playing, but he's also napping more during the day and feeling kind of clingy at night, wanting to sleep in the big bed with James and me.

He's not quite back to 100%, but all in all he's doing great. Thank you so much to everyone who has kept our family in thoughts and prayers. We had a very happy Easter yesterday and it's hard to believe, but our little Bean's 3rd birthday is just days away!! Love this little guy.

Calvin's Speech Therapy and Upcoming Surgery

Calvin has delayed speech related to his chromosome disorder, 22q deletion syndrome. He used sign language almost exclusively (and very successfully!) from the time he was 18 months old until he was about 30 months old and in that time he learned well over 100 signs. His receptive language has always been on target for his age.

He started speech therapy a couple of months after he turned two. At first he saw his therapist for an hour once a week, then later we added a second therapist to do a second hour per week on a different day, and recently he's been having a third therapy session (only 20 minutes long) with his doctor at Stanford who is a part of the Craniofacial Clinic team that follows Calvin's case because of his submucous cleft palate (also related to 22q).

It took a couple of months of speech therapy before Calvin really started trying to talk. One of his therapists, Holly, thinks it might have actually been the experience of having his arm in a sling (after fracturing his collarbone in September of last year) that motivated him to start using his voice because it was hard to sign one-handed. He still uses sign language along with speaking to communicate, but he is now saying single words, and sometimes 2- or even 3- word phrases. Yaaay!

Here's the Bean with Holly back in January. You can see here that he's not always a cooperative little student!

Here he is with one of his animal books in February.

But now that he is talking we can see and hear that he has a lot of problems with his articulation. He's not using his lips and tongue the way he needs to in order to produce sounds, so when he talks it usually comes out as all vowel sounds, no consonants. His speech therapists (and his dad and I) have been working with him for the past several months trying to help him get the hang of putting his lips together to go "b-" "mm-" "p-." It can be really frustrating for us and for him :/ We try not to push too hard because we don't want to make talking stressful for him.

Calvin's speech development is also affected by his submucous cleft palate. His palate looks intact, no hole when you look into his mouth, but the muscles underneath his soft palate (back of the mouth/throat) are not connected as they should be. Those muscles are supposed to connect in kind of an arch that moves the soft palate up and down and helps control air flow when talking or eating. Those muscles in Calvin's mouth are not connected, so they can't do their job properly.

Calvin is going to have a surgery to repair his submucosal cleft. This means his plastic surgeon will go in and connect the muscles of his soft palate. We don't know how much this will help his speech development, but we hope that it will make things a little easier for him. It should help with the air flow when he is speaking. Of course, it won't solve the problem of getting him to use his lips correctly, and we know he will need continued speech therapy no matter what.

Unrelated to his speech and palate, Calvin also has a hernia in his abdomen that needs repairing. (It's not the result of an injury. When babies have hernias it's because they were born with a little hole where there shouldn't be one. It doesn't hurt him, but it could hurt him one day if part of his intestine were to get stuck in the little hole that shouldn't be there.) To repair the hernia, it's a really quick procedure and it's usually an outpatient surgery. They make a tiny cut and a tiny stitch. We know this because Calvin has already had hernia repair surgery before. But he still has to be put under general anesthesia for the hernia procedure. So, to reduce the number of times he needs to be under anesthesia, we are opting to do the two procedures - the palate repair and the hernia repair - together in one surgery.

Two different surgeons are needed for the two different procedures: a plastic surgeon for the palate repair, and a general pediatric surgeon for the hernia repair. To make his case even more complex, Calvin also has to be cleared for surgery by his cardiologist because of his heart defect (a tiny VSD that gives him a heart murmur, but is otherwise non-symptomatic). His cardiologist will likely recommend that he have a special team of cardio-anesthesiologists do his anesthesia for the surgery.

We've got a surgery date set for March 31. So soon!! But it's pending an appointment with his cardiologist to get the all clear that his heart can tolerate surgery. (We're not worried. He hasn't had any problems related to his VSD - Thank God.) He will also have to have pre-op appointments with his plastic surgeon, his general surgeon, and the cardio-anesthesiologists. All between now and March 31! And, as we learned from Henry's surgery last fall, there's always the chance that his surgery will end up getting rescheduled, particularly because there are three different departments involved: plastic surgery, general surgery, and cardiology.

I'll post updates on Facebook, and, assuming the surgery actually does happen on the 31st, I'll wait until after it's over to write another blog update on Calvin.

The closer we get to surgery, the more the whole ordeal feels pragmatic and logistical instead of hairy and scary. I've definitely spent wakeful nights and tearful moments worrying about Calvin going through another surgery, but at the moment I'm not feeling fearful as much as I am feeling determined. I hate that he needs surgery. It feels awful and unfair. But we're eager to do anything that could help his speech development, and it will be a relief to have that last hernia taken care of. We know he will be in good hands. We are so lucky to have access to the great medical care we get from Stanford for both boys. We love our little Bean and we'll keep doing everything we can to help him grow and thrive.

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?

Why this Dirty Oatmeal Dish Made My Morning

If you're thinking Seriously? Ew. Why would anyone open up a blog post with a photo of a dirty dish?? then, please bear with me! And, um, go ahead and scroll down so you don't have to look at it any more :)

That nearly-finished oatmeal bowl was a very happy sight for me because it wasn't my nearly-finished oatmeal or Calvin's nearly-finished oatmeal... it was Henry's! Henry ate almost a whole bowl of oatmeal for breakfast! Minus the dried blueberries. Not ready for those yet.

Here's why Henry's nearly-finished oatmeal bowl is a big deal. At 17 months old, Henry's diet is still primarily formula and purees. This would be a typical diet for, like, a 6-month-old. Typical kids Henry's age can eat a wide variety of table foods - they can generally eat what the rest of the family eats. Calvin could at that age (although he wouldn't, picky-eater that he is...). I realize that given Henry's medical and developmental history of course he doesn't eat like a typical kid his age. But it is so exciting and such a huge relief to see him make progress!

We've been working with a feeding therapist since April of this year. In the spring, he progressed from plain purees to thicker purees, to being able to eat purees with cracker crumbs sprinkled on top. From there, I tried feeding him more textured foods that were still similar to puree: things like couscous in tomato sauce, rice in thick soup, and oatmeal. But when offered those kinds of foods that had little particles unlike a smooth puree, he kind of panicked and hated it because he just couldn't seem to move those little pieces to the back of his mouth to swallow a bite. His oral motor skills couldn't deal with those textures yet. So I backed off.

And then he had his surgery. 

Immediately following his surgery he took few steps back to really thin purees until he was fully recovered. But since mid-November, he's been making much faster progress! His feeding therapist feels that his breathing difficulties before the surgery were making it uncomfortable for him to eat - totally understandable! - and this was keeping him from developing his oral motor skills. Now, with his airways opened up, he has progressed to thick purees and even pieces of very soft foods. We started with cubes of banana and avocado, which would essentially mush into a puree in his mouth. But this week he was even able to eat small pieces of pasta! Rotini pasta!

So Tuesday morning I went for it with the oatmeal. I was like, Ok, Henry. It's time to try this again. You're gonna do great. You're a much better eater. You ate rotini pasta. You eat guacamole. You can eat oatmeal.

And he did!!! He ate almost a whole bowl of instant blueberry oatmeal - minus the blueberries :)

Hoooraaaaayyy!!!

OATMEALLLL!!!

I realize that oatmeal is not actually a huge deal when it comes to developing oral motor skills... even for Henry. But the oral motor development part is not the only reason I am excited about him eating oatmeal. Here's the other thing...

Oatmeal is big people food.  It's a "table food" as I've heard our docs and therapists and nutritionists call foods that are not specifically for babies. And the more table foods that Henry can eat, the fewer batches of fruit and veggie purees I have to blend up! The fewer jars and squeeze packs of organic baby food I will need to buy! The more foods he can share with the rest of the family! The fewer foods I will have to prepare for a single meal! We can all eat oatmeal for breakfast!! Hallelujah!

So here's to that dirty oatmeal dish. I washed it with pride.

If only all our dirty dishes were that exciting to me! Ha!


What did your kids do this week that made you say "Hooray!" ?

Little Tykes and a Little Hike

Things are feeling like they are back to normal around here after a crazy October. Some good crazy, like lots of fun Halloween stuff and watching our SF Giants win the World Series! But some pretty tough crazy, like Henry spending a week in the hospital. So it's nice to be back to our version of normal - though I do miss getting to watch the Giants play almost every night!

Henry is doing really well now that he is all recovered from his surgery.

Like, really really well :)

No more puking or reflux symptoms, even at night. No more chronic runny nose. No more meds at mealtime. Still a little snoring, and he does have to use the BiPAP when he sleeps, but he is getting closer to sleeping through the night again and we can tell that he is getting better quality sleep because he's also transitioned to just one nap (like a big boy!) and he's starting to show signs of reaching more milestones!

He's started doing his own version of "commando" crawling, which usually looks like he is swimming across the floor.

And yesterday for the first time I saw him move himself from lying down to sitting up all on his own! And then he wouldn't stay lying down for nap time... Good one, Henry. Touché.

He's babbling a lot and eating a lot and I'd swear he's had a growth spurt in the last two weeks. It's wonderful to see!

Calvin is also doing well. He's all recovered from his clavicle injury and he's been out of the sling for a couple of weeks now. No news on a date for his hernia surgery. We decided to wait until his clavicle was all healed up, and we are not in a hurry to head back to LPCH. Calvin's got another evaluation coming up with his SLP (speech and language pathologist) doc at Stanford next week, so I will write a more detailed wellness update on him after that.

Henry has another sleep study coming up this weekend, so we will get some info on exactly what settings on the BiPAP are right for him and just how well it is helping him sleep.

We've had no doctor appointments for two weeks in a row, which may not sound like a lot, but to me it feels like a big break! I imagine that things will start to feel stressful again once we get the ball rolling again on Calvin's medical stuff, but for now I'm thankful for things feeling a little calmer around here.

We took a little hiking trip last weekend up near Mt. Tam. Beautiful weather, beautiful location. Our friend Matt and his daughter, Autumn, came with us and Autumn and Calvin were super cute toddling along the trail.

Calvin loved picking up little rocks and pine cones and his favorite thing to do was to throw rocks into the little creeks and pond.

Happy Fall, y'all.

The Ironic Thing About Fixing Henry's Sleep Apnea

Henry finally came home last Wednesday, after a week-long hospital staycation following his tonsillectomy/adenoidectomy. It took that long to get a BiPAP ventilator set up at our apartment for Henry to use at night.

The t/a surgery cleared his airway and made a significant improvement in his breathing both waking and sleeping. It seems to have also cleared up his chronic runny nose :)

But, because of his hypotonia, it still takes more effort for him to breathe at night than his pulmonologist would like. We don't want him spending too much energy on breathing that he could be using on development. So basically, the surgery fixed the sleep apnea, but didn't totally fix Henry's nighttime breathing issues. Hence the BiPAP.

The BiPAP is similar to a CPAP which is commonly used for people with sleep apnea. The difference (to the best of my understanding) is that a CPAP gives constant "positive air pressure," meaning that it blows air into the person's nose/mouth to keep their airway open, and a BiPAP also gives positive pressure, but at two different levels which alternate to help Henry breathe in and also breathe out. With Henry, part of the problem is that his little lungs and diaphragm don't exhale effectively which means he could end up with too much carbon dioxide in his body. Hence the BiPAP.

On Monday night we had a scare that sent Henry to the ER. We knew going into his original procedure that the doctor would only do the tonsillectomy if he felt it was absolutely critical. They don't like doing that surgery on kids as young as Henry, and one of the reasons is that they are at higher risk for having post-surgery bleeding. For Henry, it was absolutely critical and the doctor still did only a partial tonsillectomy to be on the safe side. Unfortunately, Henry did develop bleeding a week and a half after the surgery. When I saw him coughing blood, I took him to the ER and his own ENT, Dr. Chang, happened to be on call. Henry had to go back into the OR so that Dr. Chang could take a look at the surgery site and cauterize it again. Henry spent just one night in the hospital this time, and came home the next day feeling fine.

Back in the PICU at LPCH... getting some rest after the procedure.

I realize that none of that is ironic so far. I'm getting to that part.

With all these measures taken to enable Henry to get better quality sleep, you might think that we're all getting better sleep. But better quality doesn't necessarily mean better quantity. Before the surgery, when he was still snoring like a chainsaw, Henry slept through the night just fine. He would typically sleep from about 8pm until 8 or even 9am. But his hospital stay has messed up his sleep schedule! He got used to being woken up at night for meds or a vitals check and getting a bottle to help him go back to sleep. So now he is still waking up for milk in the middle of the night and getting him up for a bottle means taking of his mask, turning off the machines... and then putting the mask back on and turning the whole shebang back on afterward. Which is ok if you do it once and he goes back to sleep... but what's happening is he'll go back down for maybe half and hour and then wake up and fuss and we have to do the whole thing again! Instead of helping Henry sleep through the night, this whole ordeal has actually messed up his ability to sleep through the night!

So, no, friends and family. We are not all getting more rest around here. James and I haven't had a decent night's sleep since before Henry's surgery! In fact, big brother Calvin has decided to have a sleep regression of his own. It started with him waking up at 5 or 5:30am instead of 6:30 or 7 like he used to, so we tried a later bedtime for a few days, which seems to have decidedly backfired. The past few nights he's been waking multiple times a night, and last night James gave up and let him sleep in the bed with us. #facepalm

It has to stop! Mama and Daddy need sleep! There's just not enough coffee in the world!!

We gotta night-wean Henry again and I think we'll go back to an earlier bedtime for the Bean.

I mean, I am thankful that Henry is getting more restful sleep and that we don't have to worry about him, ya know, not breathing during the night, but man oh man I miss getting a full night's sleep!!

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz z z z z z

Oh sorry, I just fell asleep while typing this post.

Henry's Home from the Hospital!

After spending a week in the hospital after his ENT/GI procedure, Henry is home! 

His procedure was just as we expected: 

The gastroenterology team used a scope to look at his upper digestive system and found that everything looks great :)

The ENT team used a scope to look at his throat and saw that his tonsils and slightly-larger-than-normal adenoid gland were seriously blocking his airway while he was asleep. So his ENT doctor removed his adenoid and part of his tonsils (not a complete tonsillectomy because apparently that is considered risky in a kid his age), as well as some tissue from around his voice box in order to clear the obstruction. 

All the doctors involved said everything went smoothly. 

So the procedure itself was just what we were expecting, even hoping for. But everything leading up to the procedure and everything following it was totally not what we were expecting!

For starters, the procedure didn't even happen on Oct. 3rd as it had been scheduled! We made all our preparations, brought Henry down to the hospital, checked in, sat in the waiting room... and then we were told that an emergency case had come in unexpectedly and that now the surgery schedule had changed, and, more importantly, there would no longer be room for Henry in the pediatric ICU for his recovery post-surgery. So we got sent home!

He got rescheduled for the following week after James harassed  conveyed our concerns to Henry's doctors. So once again, we prepared for surgery day, dropped Calvin with our cousins, and brought Henry down to Lucille Packard Children's Hospital (LPCH) and this time the procedure actually did happen and it went smoothly. 

Henry in Pre-op with his daddy, waiting to be taken to anesthesia. 

I spent the first night in the ICU with Henry and it was a rough one. Poor little guy was very uncomfortable as he came off the anesthesia and felt the soreness in his throat. He was on pain meds and even a sedative. I could already hear that his breathing was much quieter while he was asleep, but the ICU nurses and doctors felt that he was still working too hard to breathe and they gave him oxygen support via a nasal cannula. 

We had been hoping/expecting to be discharged the next day... but when Henry was checked on by the pulmonologist (lung/respiratory specialist), she said that he would still need a BiPAP to support his breathing during sleep. This was a surprise for us. Based on talking with our ENT doctor, we had hoped/expected that the surgery would allow Henry to sleep safely without a CPAP or BiPAP machine. But the pulmonologist explained that although the surgery successfully cleared the obstructions in his airway (Yay!), Henry's hypotonia (low muscle tone) was still keeping him from breathing well enough without using too much energy when he's asleep (Boo). And he couldn't be sent home until there was a BiPAP set up at our apartment for him to use.

Here's our nugget Henry the day after surgery. He's sleeping with a BiPAP to help him breathe, he's hooked up to lots of monitors, and he's got a big sleeve on to keep him from pulling any of that stuff off. 

Getting that machine to our house was waaaaayyyy more complicated than we were prepared for. Good news was that the hospital case managers did all the work of consulting with our insurance and with the medical device suppliers that our insurance would pay for. Bad news was that it took a week to make it all happen! 

It's complicated and boring to explain why it took a week, but long story short, Henry spent a week in the hospital and James and I took turns spending the night with him. Calvin also spent his fair share of time hanging out at LPCH, playing with their awesome model train and meeting the therapy dogs that come around to visit the sick kids.

And visiting his brother...

Henry's recovery went well. After that first night, he no longer needed the serious pain meds and was fine on Tylenol and Motrin. He got lots of rest, and after a couple of days he showed us that he was getting his energy back. 

"I"m sitting up! I'm smiling!"

"What are all these wires for? Are these, like, important?? LOL!"

"I can go home now, right guys?? Right? Guys...?"

They kept him in the ICU for most of his stay, but finally on his last night he was moved to a regular room. 

Meanwhile, the hospital case managers got things sorted out and the medical device supplier sent someone over to set up the BiPAP equipment at our home. And finally Henry was discharged from the hospital!

Ready to go home from Hotel Hospital!

James and I are so glad to finally have Henry home and to not be taking turns sleeping in the hospital! We are adjusting to using the BiPAP for Henry. We were expecting a small machine with a mask attached... but it's a pretty big set-up. There's the machine itself with the tubing and the breathing mask, plus a small humidifier, plus a compressed oxygen machine, and then a back-up oxygen tank just in case. We are getting lots of support from the company that supplies the equipment. They will do several home visits over the next few weeks to make sure we are really comfortable using the machines and that the machines are working properly. 

Here's a pic of the machines. The blue box on top is the BiPAP ventilator itself. The small white box below it is the humidifier. The big black box under the desk is the compressed oxygen tank. In the corner behind the desk you can kind of see the handle of the extra oxygen tank.

Thank you to everyone who has been keeping Henry and our family in your thoughts and prayers. We are all doing just fine. We're very thankful that Henry's surgery went well. And though we were not super excited to spend a week at LPCH or to have all this medical equipment set up in our home, we are grateful to have the support Henry needs to sleep safe and sound.