Thursday, April 16, 2015

Calvin's Birthday Breakfast and a Trip to Fairyland

 The Bean turned 3!!

We had done a little birthday celebration with our cousins on Easter Sunday, but of course we wanted to make Calvin's actual birthday special too!

Birthday Breakfast is becoming a big tradition for our fam. I always want to make it special, but this time I think I took it pretty far with party decor since we didn't throw Calvin a party with his friends this year. Calvin was still on his mushy mush diet following his palate repair surgery, so we couldn't do any of our usual birthday breakfast goodies. Instead, I made a big batch of smoothies for Calvin, Henry, James, myself, and our cousin Hartley (who took the pics for us). I even taped three birthday candles to the ends of three drinking straws so that Calvin could blow them out :)


Birthday Breakfast! Smoothies all around!

Calvin checks out his birthday gifts. He was especially excited about the bubble machine!

And then he found his new tricycle!!

Calvin loves his new ride! His feet do reach the pedals, I promise! I realize it doesn't look like it in that pic, ha ha :) The bar attachment allows a grown-up to push him and help him steer while he gets the hang of it and it can be removed when we don't need it anymore. He has a helmet too, which is a hand-me-down from his friend Sagan.



Speaking of Sagan, he and his baby brother Izzy and their mama joined Calvin and Henry and me at Children's Fairyland in Oakland to spend Calvin's birthday among the storybook characters and magical creatures there.

Entering Fairyland, welcomed by a yellow dragon and an elf blowing bubbles from his mushroom perch.

Children's Fairyland is an amusement park for littles with rides and playgrounds and displays that help tell folk tales and fairy tales like The Three Little Pigs, Peter Pan, Alice in Wonderland, Pinnochio, and many others.

Sagan and Henry as two of the three little pigs... Calvin didn't want to go into the houses! You can see the house of bricks in the background. Maybe Calvin is the wolf?

These little blue boxes accompany each different story area. You can get a special key to use on these boxes to hear the story and a song. Calvin is listening to Snow White sing "I'm Wishing" from the Disney movie.



Riding the Gryphon on the Alice in Wonderland carousel. Henry is asleep in the Ergo. I feel like this pic makes it look like my arm is in a sling, but it's Henry's head under the Ergo hood.

Crawling through the tunnel into Mr. MacGregor's garden in the Beatrix Potter neighborhood.

A ride on the Jolly Trolley! 

Rachel, Izzy, and Sagan in the car next to us!

I know Calvin was exhausted by the end of our day at Fairyland, but he didn't want to leave! He just wanted to hang out with this elf on the mushroom and chase the bubbles around! He still says the bubbles were his favorite part.



He may be tiny, but he is looking more and more like a big boy every day. He is as curious and independent as ever. He has such a sweet and open heart. Always thoughtful of his baby brother and friendly to others. Being a toddler is not easy! Sharing is hard, having grown-ups set limits is hard, learning new skills is hard. Going through surgery and recovery is most definitely hard! But Calvin's sunny charm shines through all of it, and God's love shines through him.



Happy 3rd birthday to our Bean, and many many more!

Thursday, April 9, 2015

Hippity Hoppity Easter 2015

I'm catching up on Spring Things! Most of the month of March I felt absolutely buried under a mountain of appointments and I couldn't even begin to think about planning anything beyond Calvin's surgery. So I let my self plan nothing for Easter and nothing for Calvin's birthday ahead of time. I waited to see how we were all feeling post-op. And this was weird for me, considering that for his past two birthdays I literally started party planning in January. I know, I'm crazy.

But surgery came and went and all was well. Calvin was feeling even better than expected. So I talked to my cousins and we pulled together some last-minute ideas, including a super-last-minute rainout plan, and we ended up having a very nice Easter celebration.

On Saturday, our cousin Ramiro came over to color eggs with Calvin. We didn't try letting Henry participate in this one... maybe next year ;) They used plastic eggs to do some stamp painting while I got the cups of dye ready, then we dipped and dyed and dried and the eggs turned out colorful and bright!




Saturday night, the Easter Bunny apparently hopped into our apartment and left some goodies for Calvin and Henry, including eggs hidden around our living room!


We did not attempt to take the babies to church, but we did start the day with reading the Easter story and retelling the Easter morning story with our Duplos and Bible toys :)



 I made Easter sensory bins for the boys where they got to hunt for tiny eggs (shh! Don't tell them they're candy!) and butterflies in Easter "grass." I even got edible Easter grass for Henry!






Later the boys hunted for the eggs hidden around the living room. That sneaky Easter bunny filled the eggs with some of their favorite little toys from our small world play! Little plastic dinosaurs, animals, and bugs ;) (They have no idea that Easter eggs are "supposed" to have candy. They were totally happy to find their own little toys hidden inside! Wonder how long we can get away with that trick...)




Then our cousins came over! And they helped me make the cute little bunny pudding cups. Pudding cup + coconut shreds dyed green with food coloring + jelly beans + Peeps bunnies + a Sour Punch straw for the handle!




I did pudding instead of my usual cupcakes because of Calvin's mush-food-only post-surgery diet. He couldn't eat any of the candy on top. These doubled as an Easter and a birthday treat and we all gathered around Calvin to sing Happy Birthday.



Of course, the obligatory family Easter photos! I can't resist. Plus, our wild and unkempt backyard looks pretty in Spring, even with the drought :)



It had rained that morning, which is why we were at our place instead of at a park like we had hoped, but it was barely a drizzle and it got nice and sunny in the late afternoon. Since the sun was out and the yard was hardly wet, Calvin, Ramiro and Abbie did a little egg hunt in the backyard. 



And then we put bunny ears on the babies and stuck them in a basket full of Easter grass and stuffed animals. And they hated it. Until we started blowing bubbles, and then they were like, OK this isn't so torturous after all :)

Ew. What is this stuff?? It's all... ew. I hate this.

Get this stuff off me! Get me out!!!

Wait. Are those... bubbles? 

We LOOOOOVE bubbles!!!!

This is the GREATEST!!

LOL. The things I do to torture my kids for the sake of a cute picture.


Then we brought our basket of bunnies back inside and added baby cousin Evan! And Evan was like "Seriously, guys?" But by then Calvin and Henry were over it and were actually having fun in the basket!


:D Happy Easter! 

Monday, April 6, 2015

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.


video


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.


Thursday, March 19, 2015

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.



Tuesday, March 10, 2015

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 :)