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.

Too Busy to Blog! And a Quick Trip to NC

So far 2015 feels like a nonstop whirlwind of places to be, phone calls to make, and cleaning to do! Last year we would have stretches of time where we'd be super busy for a few weeks, and then things would calm down and we'd get a bit of a break. I am ready for one of those lulls, but there doesn't seem to be one in sight!

I feel so behind with blogging, but honestly, as much as I love this blog, it's the thing that has to go on the back burner when I'm feeling overwhelmed. If you follow us on Instagram and Facebook, you'll see I update those more often since it's easier to share some quick pics than to write up a whole post!

We had a bit of a break a few weeks ago with a quick weekend trip to visit James' brother, Stephan, near Charlotte, NC. Two of James' sisters came with their kids, and James' mom and dad came as well. We had a big family party to celebrate Stephan's 40th birthday. It's always great to hang out with family. And we never remember to take pictures because we are too busy enjoying ourselves! But I think that's a good thing. 

After we left Stephan's, we drove up to Raleigh and took Calvin and Henry to see the dinosaur exhibit at the NC Museum of Natural Sciences. So awesome! 

It's a real diplodocus femur!

Digging for fossils

Sitting in a sauropod footprint

Rawrrr!

While we were in NC, we even got to see some snow!

Henry did not love the snow... I don't blame him. I don't love it either! 

Calvin, on the other hand, definitely loves the snow :)

We skipped Tot School for a couple of weeks after Valentine's day, because I was just too busy to put anything together! We're back to it, but I think instead of doing a post a week (which I clearly cannot keep up with!), I'll wait a few weeks and then combine our Tot School themes into fewer posts.

We're keeping it pretty simple at the moment with some animal habitat themes. Last week we did Arctic & Antarctic animals, and this week we're doing ocean animals.

In the meantime, I will try to get around to writing some therapy updates on the boys. Long story short, they're doing great health wise and they're getting lots and lots of therapy which is keeping us all really really busy!

Here's an adorable video of the boys (including James) playing in the snow :)

Happy Henry and Calvin-tines Day

Last week for Tot School we did all Valentine's Day themed play. In fact, we were having so much fun with all our pink and red and hearts and sparkles that we didn't even do a letter of the week! The letter N will just have to wait.

We started out the week by painting some Valentine cards for the boys' grandparents & great-grandparents. Calvin, Henry & I also painted cards for James. 

I picked up these Valentine gel window clings from Target and Calvin LOVED them. We did some letter matching with them too. Only problem was that he often wanted to carry them around the room and they kept getting all linty from his clothes and the couch! 

I included the gel clings in a Valentine sensory bin along with a few other Target dollar section items: the mini "koosh" balls, some heart-shaped "slinkys," the necklaces, and some heart buttons. I also added heart confetti and conversation heart stickers which I had leftover from last year and some red, pink, and white pom poms. The boys both enjoyed playing with all these goodies :)

After a while, Calvin took all the pom poms and koosh balls out and made "rain" with the confetti and stickers and buttons. (The stickers have paper backings so they are not sticky.)

Then we pulled out our Valentine mail box (also from last year) and Calvin played with posting the little items through the slot. 

I took some of the heart confetti and buttons along with some pink glitter and made two Valentine sensory bottles. At first I had made the sensory bottles in baby food jars, but they leaked so I switched to these little plastic jars that used to hold sprinkles for baking. 

And speaking of baking, on Friday Calvin helped me bake a very Valentine "funfetti" cake! 

The night before Valentine's Day, Hartley babysat for us and James and I went out for a Valentine's date night :) I love date night! 

For breakfast on Valentine's Day, James treated us all to heart pancakes. So cute! He thought about bringing them to me in bed, but decided that the babies are not ready for Pancakes in Bed just yet :P

He made them by pouring the pancake batter into a plastic bag and piping it like icing onto the pan. 

Our original plan for Valentine's day was centered around getting Henry's hair cut. We were going to make a day of it and ride the train down to San Bruno, where there's a nice kids' salon, take Henry for his hair cut, have lunch there in the downtown area, and maybe treat ourselves to ice cream or something. 

But the weather that weekend was so warm and sunny we couldn't resist the urge to do something outdoors instead. Still, Henry. Needed. A. Haircut. His long curls were always in his face. So I decided I could just do it myself really quick and then we could head out for a picnic instead of a train ride. 

In true second child fashion, Henry's first haircut was much less ceremonious (and also much less stressful)  than Calvin's first haircut. I was still nervous. And he wouldn't keep his head still! But once I got started it was actually easy. Snip snip here, snip ship there... and Voila!

Not too bad. We actually thought it would still curl, even though it was shorter, so we were surprised to see it stay straight even after being washed. Oh well. Bye bye baby curls. Henry is a big boy and deserves a big boy hair cut! 

With Henry's haircut done, we packed up and headed to Park Chalet for a sort of cheating picnic. I say cheating because it's a restaurant, so we get to have our picnic served to us, but that's what makes it so nice! It was pretty crowded, as it always is on such nice warm days, but we got a spot on the lawn and spread out our blanket. Calvin had fun playing with other kids there and we all got to relax and enjoy the gorgeous day. 

We headed home for naptime and dinner. Last year I wanted to do a fancy family dinner at home, complete with special Valentine's attire (pink bow ties!). This year we kept it low key: homemade pizza in our pajamas :)

I love Valentine's Day, as I'm sure you can tell, and I think Calvin really loved it too! Here's a cute video of him talking about the garland of hearts that we had strung up in our kitchen, and showing off the Valentine sensory jars. 

Hope you had a happy Valentine's Day! XOXO <3

Tot School: Fasteners & Letter I

Last week, despite being very busy and feeling very frazzled, I managed to do some Tot School stuff with the boys. It was a good thing that our theme for the week was fasteners because I was able to rely on some of our Melissa and Doug toys and I didn't have to make anything myself.

Houses with Latches Puzzle

Undo the latch... open the door... see some animal friends inside! Say "Bye bye"... close the door and latch it again :)

Dress the Bear Puzzle

I was impressed at how well Calvin did with this. He can do the snap, the zipper, the buckle on the wrist, and he can thread the lace, but not tie it. He can do the big button with some help. 

Lacing Cards

These wooden lacing cards are also by Melissa and Doug toys. I let him work on threading the lace through any hole without worrying about any kind of pattern or order. Great fine motor work for him, and also good for working on concentration and patience :) 

Pack for a Hike

We packed for a pretend hike and an indoor picnic on a rainy day. This CamelBak backpack was great for this activity because it has so many different fasteners: zippers, snaps, buckles, and velcro! As we packed our items into the many pockets, Calvin used the fasteners to close the pockets up. Then we pretended to hike along a beach, though we were actually walking in circles around our apartment :) When our "hike" was over, we stopped and undid all those zippers, snaps, buckles, and velcro to unpack our things and we enjoyed our indoor snack picnic.

Our letter of the week was icy letter I! Here's how we Investigated I...

Words with I

Round-up of all the Items I could find with names that start with I. 

Ice Play Sensory Bin

Since I was our letter of the week, I took it as an opportunity to let Calvin and Henry play with some ice. I put a bit of water in the bin and added ice cubes, plastic ice cubes, frozen teething rings, James' whiskey stones and a couple of pitchers for pouring. Calvin loved it! For Henry, I gave him an ice pop made of frozen coconut water to gnaw on :)

Ink Stamp I

I have a set of small alphabet stamps, so I pulled out a big ink pad and let Calvin stamp away with the letter I. The small stamp was a bit difficult for him to manage, but that made it a good motor-skill exercise too.

Ice Painting

I added food coloring to water in an ice tray to make some gorgeous jewel-toned ice cubes for painting! I was worried that they'd stain Calvin's clothes so I let him do the ice painting in his birthday suit :) The ice-painted letter I turned out very pretty!

Tot School: Textures & Letter V

Last week I seriously considered skipping Tot School. Actually, I seriously considered skipping it this week too. We've just been so busy. I'm sure that is shocking :P  On top of our very full therapy schedule, Henry had his 18 month check up and I've had a couple of dentist appointments myself. Good news from Henry's well baby check - he's on the growth chart! Finally made it above that 1st percentile and into the 3rd percentile for weight!

I did pull it together and do some Tot School play with the boys that went along with the theme and letter that I had planned for last week. (I am pulling it together this week too, but we haven't had time to do much so far :/)

Our theme last week was textures. I interpreted this as any type of texture... fabric, food, etc. Here's how we played with textures:

Touch and Feel Books

I scoured our shelves for baby board books that featured some kind of texture to touch on each page. I even pulled out some holiday touch and feel books because we didn't have that many and I wanted to have a nice variety for the week.


Dress Up

I have our Halloween costumes from the past couple of years in a box for dress up, so I brought it out this week and added Calvin's fire fighter raincoat and galoshes. We had been to the fire station that day and Calvin had been given a brand new fire fighter helmet. While we played dress up, we talked about the furry bear scarf, the silky tiger costume, the slippery raincoat, and the hard fire fighter helmet.

Mini Sensory Bins

#bedhead

I set up bowls with 4 different sensory fillers, each with a very different texture: sticky yogurt, rough sea salt, soft pom poms, and smooth lentils. Then I put a couple of dinosaurs in each one so that Calvin would have something to move through the filler. Eventually, of course, the yogurt infiltrated the other bowls and I am still finding pieces of rock salt in the nooks and crannies of my kitchen ;) Hazards of sensory bins.

Sensory Laundry

Giant sensory bin! I put both boys into the laundry basket with some clothing items that had different kinds of textures. A soft scarf, a leathery jacket, a slippery raincoat, a silky robe, etc. Henry liked it more than Calvin. We played a lot of peek-a-boo with the scarves :)




Our letter of the week was V. I almost went out of order and saved V for Valentine's week, but then I decided to just stick with my plan and do a little early Valentine-making for the letter V.


Words with V

Our usual roundup of things around the house that start with our letter of the week. V was a hard one! But I found a few things. Calvin is holding a bottle of his little Vitamin D supplement. He really liked smelling the vanilla beans. I almost pulled out the vanilla ice cream from the freezer, but I decided to save it for the letter I.

Play Dough Spelling

It looks like cheese... but it's play dough!

I think it's good to go back to working with his whole name once in a while to remind him that these letters we're talking about are all parts of his name. So we used letter cookie cutters with orange play dough to spell out Calvin and name each letter. 

Van Go? Painting

Vroom! Vroom! Painting with vans! I've been really into the idea of alternative paint "brushes" lately. I think it started with the pom pom painting we did last week. Then we used Calvin's plastic dinosaurs to paint dinosaur tracks. So this week, the vans seemed like the perfect thing. Plus I modeled writing the letter V in the fingerpaint. Henry used yogurt, as usual, for painting because he can't help but put it in his mouth :) It's van-illa yogurt!


Valentine V

At the end of each week we decorate our letter. Soon we'll have Calvin's whole name! For V, I pulled out some Valentine stickers left over from last year. At first, Calvin was more interested in putting the stickers onto himself... but eventually we decorated the V :)