Thursday Thoughts: Speech and Preschool Worries

I know I originally said my Thursday theme would be thankfulness, but I wanted to do something more open-ended. I need a day when I can just write about whatever is on my mind. 

And Calvin's speech problems are heavy on my mind this week. 

He talks a lot at home now. He knows that, for the most part, I understand him and sometimes he uses sign language or just gestures to help clarify what he's saying. He can have a conversation with me, tell me what he is thinking about, ask for things he wants. He has opinions, he has complaints, like any other 3-year-old. He says funny things, he even sings songs. And I can figure out what he's saying or singing. I understand him because I spend the most time with him by far. 

Good news is that we do think the surgery he had last March to repair his submucous cleft palate has made a difference. He sounds less nasal and he seems able to create the pressure he needs to produce sounds. But his articulation problems are severe. It's like his brain and his mouth muscles have the hardest time figuring out how to make certain sounds. He has to concentrate so hard to put his lips together and say "mmm" or "ba" and there are some sounds he can't figure out how to make at all. 

Sometimes I forget how problematic his articulation is because I'm so used to the way he talks. Other people cannot understand him like I can. Especially other kids. In fact, he doesn't even try to talk much to other people besides myself and James. I think he knows they won't understand him. But it doesn't stop him from being social and friendly! He just relies a lot on nonverbal communication, which he has become really good at - body language, gestures, facial expressions... and it always helps if the person he's trying to communicate with knows a few ASL signs. 

This is why I'm so worried about him going to preschool. He's so clever and capable. He's independent and social. He's even careful and thoughtful. But what is he going to do when no one understands what he says? How far is that nonverbal communication going to get him in a school setting?? How will he show his teachers and classmates how much he knows, how much he can learn, if they can't understand him like I can?

He will still get speech therapy. In fact, his speech therapist will be right there at the school, and his speech doctor at Stanford is going to try to get him increased therapy sessions. 

Learning to communicate without me there to translate could push him to make progress out of necessity. 

And we can get him language boards or let him use his talker app if it seems like he needs that kind of thing. 

But I am afraid it will break his little heart. 

I'm afraid he'll get frustrated and feel hurt. I'm afraid that the frustration will diminish his outgoing spirit. 

I know that kids are resilient and I believe that Calvin is resilient. My hope is that the benefits of a preschool experience will outweigh the difficulties. My prayer is that the challenges will help him discover that he is able to work hard to overcome them. That's how people learn, right? That's how we become strong and capable - by facing challenges and finding ways to work through them. 

In a way, I'll be right there with him doing my own learning and growing as I work through the challenges of figuring out how and how much to support him, and coping with letting go and giving him the chance to get out there, be himself, and learn for himself. 

It's so scary, y'all. I have so much worry and I'm trying so hard to let go of that worry and hold on instead to the hopes, the goals, and the good possibilities. Is it this hard for every parent to send their kid to preschool?? 

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.

Sensory Bin + Color Sorting

I've been trying to teach Calvin color words/signs for months. I'm not, like, drilling him or anything, just making a point to name the colors of objects, reading books with color words, showing him the signs, trying to get him to name colors or find certain colors... basically incorporating it into our usual play and activities. And he is just not picking up what I'm laying down!

Since Fall of last year he's been able to learn nouns really quickly, and lately he's also starting to use more signs for verbs - go, run, jump, bounce, splash, swim, etc. But it's like there's a color block on color words!

He is making progress. If I say the color, he can usually pick the right object for most colors. Ok, some colors. And he will mostly match objects of the same color correctly. If he feels like it. I kind of think he just doesn't get why the colors matter. It's not like naming an animal you're really excited about seeing. Dear colors: He's just not that into you.

So I'm like, Challenge Accepted. And my inner elementary school teacher started devising color sorting and naming games. Here's a little game I played with him as an extension of playing with his rice sensory bin. He likes digging around in the bin of rice, finding hidden dinosaurs and animals, and using scoops to scoop and pour the grains. So this time I pulled out a little color sorting tray that I'd made and I encouraged him to take the objects he found in the rice bin and sort them by color.

The color sorting tray is a plastic paint palette from the craft store. I colored each well with a Sharpie.

The rice bin, apart from being a totally cheap and easy source of entertainment, is a type of "sensory bin."  Playing with different textures can help kids with sensory integration. Here's an article that does a nice job explaining why sensory play is important.  Inside the rice, I buried little animal-shaped beads, buttons, pom poms and dinosaur erasers for Calvin to dig up. 

As he pulled out each toy, I encouraged him to place it on the sorting tray with the corresponding color. He did OK, but he wasn't really into the sorting part. I tried to show him that I was really enthused about it and I think he was humoring me :) Mostly he wanted to put the dinosaurs back into the rice and dig them up again! All right, kid. Dig up dinosaurs.

I don't see any major reason to push the color words right now, but I do think it's a worthwhile part of expanding his vocabulary. I also think that sorting activities like this are nice for general comparing/organizing/categorizing skills and also another form of sensory play. He'll learn those darn color words eventually! #nopressure #hesjustnotthatintoyou And I've got some more ideas for teaching colors up my sleeve. #teacheratheart #playtolearn

And even though Calvin wasn't excited about this sorting activity (just like he wasn't into the sensory balloons we made!), maybe your kid would dig it ;)

The Problem with a Crystal Ball

This weekend we attended a 22q family meeting at UC Davis' MIND Institute (MIND =  Medical Investigation of Neurodevelopmental Disorders) in Sacramento. All week I was nervous about going to this event. It was on the day that other cities were holding "22q at the Zoo" events, but this was the only event we heard about in our area and instead of doing a day at the zoo they called it "22q with the Zoo" and had the Sacramento Zoomobile come bring animals to the kids who were in the care of babysitters (UC Davis students volunteering) while the parents were in the meeting.

Calvin had a blast. Of course all the babysitters loved him and doted on him and went on and on about how awesome he is. #tellmesomethingidontknow ;) Henry was even a pretty good sport about hanging with the babysitters so that James and I didn't have to keep him with us. Calvin got some fancy face/body paint and got to see some reptiles from the Zoomobile. 

These pics were taken at a restaurant after the event. 

The meeting was kind of like a conference where different researchers and doctors gave short presentations on different aspects of development and care for kids/people with 22q. Feeding and eating... general medical needs and care... speech development and concerns... all the way to the really fun stuff like early signs and treatments of psychosis. Yiiiiiiikes. See why I was nervous? Who wants to sit in a meeting and hear about how your adorable two year old is at higher risk for developing schizophrenia??

Deep breath.

I didn't want to go. I felt like we had enough information to support Calvin right now. But James - being all science-y and knowledge-is-power-y wanted to be a pro-active parent and go hear the latest research. I do think it was the responsible thing for us to do. But being responsible is hard.

The last presentation was a panel discussion which included two young women with 22q who were there to share with us about their "transition to adulthood." One of the girls was an aspiring filmmaker who had worked with an inclusive film program at Davis (I think it was at Davis...) and she showed us a short film she had edited and produced. The other girl had a Master's degree in some area of child development (sorry, I don't remember the actual name of her field!) and she was currently a teacher. A 22q adult with a Master's degree is a pretty big deal. We were impressed. She was also married. 

It was encouraging to see these two women because it shows us that some people with Calvin's syndrome grow up to live "normal," healthy, and fulfilled lives. It took them a great deal of work and a great deal of navigating services to get the support they needed (for school/work/medical stuff), but they're all grown up and doing it on their own. 

The thing about having a kid with a diagnosis is that it's possible to make predictions and guesses about his future based on other people with the same diagnosis. Seeing those women was a little bit like looking into a crystal ball and seeing that college, graduate school, and marriage are all within the realm of possibility for Calvin. And that's a great thing to be able to hold on to - this vision of Calvin as an independent and successful adult. 

The problem is that the crystal ball also shows all the scary and worrisome possibilities. The research on the 22q population shows us lots of increased risks. Medical problems. Speech disorders. Learning disorders. Anxiety disorders. Psychosis. 

And I'm like noooo! Why did I look?! I didn't want to know those things! It's a burden to know those things. It's a burden James and I have to carry because it's our job to see them coming, catch the early signs, and get him help. A common theme from all the researchers and docs talking about all those possible disorders is that early interventions show the best results. Getting help as soon as possible is the best solution anyone's got at the moment. 

But I have to hold on to that vision of Calvin's possible happy future. How do I do that with the word schizophrenia haunting the back of my mind?? Then of course, there's also Henry and the crystal ball of possible outcomes for Dup15q!

Of course this "crystal ball" only shows possibilities. Only Calvin and Henry can show us what their outcomes will be. But I feel like these diagnoses have robbed us of the freedom to be fully optimistic about their future. We have to find a way to hope for the best, to believe in the best possibilities for them, while also working our asses off to mitigate the problems. And it's not just about looking to the future. Even if we put aside the crystal ball and focus on the present, it is still hard to balance caring for their needs and worrying about their struggles, with enjoying them and appreciating how wonderful they are. 

I remind myself that all parents have to do that. We all have to balance the effort of parenting with remembering to enjoy our kids. We all have to balance hope and worry for our kids' futures. From what I can tell, the difference for special needs parents is that crystal ball. Not every parent has doctors and researchers listing probable outcomes for their children. It's a blessing and a curse. And we're doing our best with it.

Wellness Update: Hearing, Feeding, and Playing

To end another busy week (is there any other kind of week??), we are getting ready to go camping! So I gotta make this quick!

Calvin - 
Our case worker found a spot for him in a speech therapy play group! Still waiting to hear when he can start.

He had a hearing test a couple of weeks ago and it looks like his hearing is fine and all the parts of his ears are working fine. (He is followed by audiology because his submucous cleft palate puts him at risk for hearing and ear problems. So far he hasn't had any. Yay!) The test was really interesting to watch. She gave him toys and showed him that when he hears a sound, he is supposed to add a toy. For example, they started with a ring stacking toy. So every time he heard a tone, he was supposed to add a ring to the stack. Then they did the same with putting blocks in a tub, and lastly with stacking blocks. He did amazing! The tone would sound, he'd look up at the doctor and hold up the toy as if to say, "Now? I do it now, right?" And she would nod and he'd add the toy. He nailed it.

These are blurry because of the two-way mirror. Henry and I were in the outside room watching Calvin.
Calvin was in the booth with the doctor.

Henry - 
Poor Henry was so sick with a fever for several days, followed by several days of a runny nose! He is finally well again, I'm glad to report.

The swallow study was last Monday and oh it was stressful. Doctors talking fast, giving instructions to one another, adjusting Henry, telling me when to start and stop feeding him, switching bottles, switching nipples, and me only vaguely knowing what is going on! Basically they took an x-ray video of his throat while I fed him liquids at different consistencies and with different bottle nipples to see what thickness of liquids he is able to swallow without "aspirating." Aspiration is when a little bit of the liquid actually goes down the trachea into the lungs.

On Thursday we had an appointment with his feeding therapist (OT) and she explained the findings of the study. They tested two levels of thickness and they referred to the thinner one as "thin" and the thicker one as "nectar." Henry was able to swallow the "nectar" thick liquid without aspirating. When drinking the "thin" one, he aspirated several times, regardless of which bottle nipple was used (the different nipples make the liquid flow faster or slower). Normal formula would be a "thin" liquid. Meaning that when he drinks formula, he is likely aspirating a teeny bit every time.

So this means we have to thicken his formula to a more "nectar"-like consistency using a special thickener called Thick-It. But it's complicated because the thicker it is, the harder it is for him to suck it out of the bottle. But the thinner it is, the more likely that he will aspirate. So there's a process of trial and error involved in finding just the right thickness and also the right bottle nipple.

THANKFULLY, after just a few days of this formula + thickener circus we seem to have struck a balance that is working! Other good news is that the swallow study confirmed that he has no trouble eating purees, so he can keep eating his solid foods (with oils added for calories!). And the best news of all is that I have seen a big improvement in Henry's mood, energy, and appetite over the past 24 hours, ever since we hit the sweet spot with the Thick-It. Fingers crossed and prayers lifted that it's not just a fluke and that this new feeding plan will work for a good long while! It is so reassuring to see him happy, fed, and ready to play.

Speaking of play, Henry also had his first physical therapy session this week. I like our therapist and look forward to seeing her every week. She will come to our house every Tuesday to work with Henry for an hour and it's during Calvin's nap time, so it's nice and peaceful in the living room. From our first session, it sounds like the immediate goal is to improve his neck strength. He still isn't really holding his head up for long periods. He tends to tilt his head back and kind of rest it on his shoulders and spine. So she showed me how to encourage him to "engage his neck muscles" and really use those muscles to support his head.

We also talked about getting Henry a new seat to use on the floor for playing. He sits in the Bumbo which gives him a chance to play sitting up, but it's also a pretty major workout for his trunk and neck. His therapist said it would be good for him to also have a chair where he doesn't have to work to sit and he can focus on learning to manipulate toys. He can do this in his high chair, but I had been thinking it would be nice to have something he could use in the living room and that we could bring to our friends' houses for him to use. So I went ahead and ordered him this chair, which is actually a feeding seat by The First Years brand. Though it's a feeding seat, he can use the tray for toys. It can sit right on the floor in our play area and it's small enough to be relatively portable.


That was not actually quick. Oh well! A-camping we will go! Gotta finish packing and load up the car! Camping post coming next week.... :)

Signing as a Second Language

The boys are feeling better, though their noses are still like leaky faucets! Henry has eaten pretty well the past couple of days so that feels like an improvement. I'll give more of a wellness update later in the week after we get through the appointments that were rescheduled from last week.

The one appointment that we were able to keep last week was a meeting with our case worker from Golden Gate Regional Center. She came to do Calvin's yearly eval and to talk to me about finally setting him up with speech therapy. So I'm happy to say that we're very close to getting him set up with a therapy play group.

In the meantime, Calvin is starting to say more words! It's hard to understand him, but he's definitely talking. Some of his new words are help, splash, tiger, and bubbles. And he's improving on how he says some of the words he was already using like light. We're starting to hear beginning and ending consonants with that one so it sounds more like "yight" instead of just sounding like "I."

He's combining these new words with his signs to communicate. His doctors (and case workers and everybody else) are always impressed with how well he communicates using sign language. We're super proud of him and, as I've said before, super thankful that it has worked so well for us. The docs (and others) always ask, How did Calvin learn sign language? Well, his dad and I taught him. Then they ask, How did you learn it? And the answer is that we started with a baby sign class and then went kind of DIY from there.

We wanted to go beyond the typical small repertoire of baby signs (milk, more, food, help, etc.) and really try to equip Calvin with enough words to communicate not just his needs, but - to some extent, still limited - his thoughts and ideas. Last I counted (I actually keep a list!), Calvin knows and uses 112 signs. He can combine them into two or three word sentences. This is comparable to the spoken vocabulary of a typically developing 24-month-old.

If you're interested in signing with your child, here are the things we did (and still do!) to learn signs ourselves to be able to teach them to Calvin. It feels like I'm learning ASL as a second language, and for Calvin it's really his first language!

1. Take a class.
If you're near San Francisco, Touch Blue Sky does classes at different locations in and around the Bay Area. We took the one called Playgroup Zoom when Calvin was 6 months old at Natural Resources and we loved Bill White, the instructor. He really inspired me to take sign language seriously. Wherever you are, check out parenting resource organizations to find a class. My Smart Hands is another organization that I like and they offer classes all around the US and Canada.

2. Get an app.
Speaking of My Smart Hands, their app is another nice way to get started. We eventually outgrew the app and needed more words than the app had in it's dictionary, but it was plenty of signs for us in the beginning. There are other apps out there so definitely shop around and read the reviews. It was nice to be able to just grab my phone and look up a word when I found myself talking to Calvin about something I didn't know the sign for.

3. Use a book.
Also from Laura Berg of My Smart Hands, we have The Baby Signing Bible. It has lots of great info about using sign language with little ones and it's another easy way to look up words on the fly. Again, there's other books so shop around, but this is the one I can vouch for :)

4. Google it.
This is what I do most of the time. But I have a specific ASL website that I look for in the search results. Signing Savvy has a pretty extensive dictionary and simple, clear videos. The catch is that unless you have a subscription, their search feature is kind of a drag. You type in a word and it takes you to the entire list of words starting with the same letter, so you have to scroll (or ctrl+f) for the one you wanted. I find it easier to Google "ASL" and whatever word I was looking for, then click on the Signing Savvy search result. Or you could add "Signing Savvy" to your search terms. We should probably just pay for a membership and support them, but we haven't yet. ASL Pro also seems to be a good one. They have a very extensive dictionary.

5. Watch videos.
Laura Berg of My Smart Hands has some videos on YouTube with her own kids, and Baby Einstein also has a baby signs video on YouTube. I've heard good things about the Baby Signing Time series, but never used it myself.

6. Learn from friends. 
Friends who had kids before us set the example of what it looks like to sign with your baby. I feel lucky to have other parent friends who also use sign language with their kids because it means we can learn from each other and also communicate with each others' kids a little more easily. (Mainly it means Calvin can communicate with them more easily.)

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No, I'm not being sponsored by any of those organizations, I've just used their resources and it's been helpful. Here are a few other tips from my personal experience signing with Calvin that might be useful for other parents getting started with signing :)

5 Tips for Signing with Babies or Toddlers

1. Say the word and do the sign together.
I remember being in baby sign class and asking "Um, how do I teach it to him??" And the answer is to simply model the signs. When you say milk, open and close your hand. When you say food, put your fingers to your lips. You don't have to say anything extra. It's the same way they learn to talk, they observe and learn to imitate. They will likely learn the sign first, then start saying the word with it and eventually they'll drop the sign and just say it. You don't have to differentiate between signing and talking.

2. Don't sign "cow" unless there's a cow in the room.
Hee hee. That is a direct quote from Bill White, who taught the baby sign class we took. It means that context is important for building meaning. This is important for teaching new signs. Once your child knows a sign, of course you can refer to things that aren't actually there. Like when Calvin signs the names of the animals he wants to see or expects to see at the zoo, before we are actually there.

3. If it's close, it counts.
A friend with an older kid told me that if the baby does something that looks similar to a sign you've shown him, assume he was using the sign even if you're not sure. So if Calvin was kind of opening and closing his hand, I'd be like "Milk? Oh here's your bottle." And give him the bottle. It reinforces that when he does that action, it has this meaning.

4. Start with a class, then add words as needed.
Starting out with a class is nice because the teacher can help you understand the how and why behind signing with kids. It will also give you a solid repertoire of signs to start with. Eventually, you may find yourself wanting to teach your kid more words beyond what you learned in the class, so then you can turn to one of those other resources I mentioned.

Context is important, so teach signs for things your child is interested in, things you want them to learn about, and things they see around them. Around Christmas, Calvin was learning signs quickly so I excitedly taught him Jesus, Christmas, star, the names for all the animals in the manger, and also Santa, presents, stockings, and reindeer :) Calvin loves animals, so many many of the signs he knows are names of animals. He also knows signs for his favorite foods and toys.

5. Their signs may not look like your signs, so pay attention!
Baby motor skills are wobbly still developing, as is their sense of where their body is in space. So if they do some weird hand thing every time they see a cat, even if it barely resembles the actual ASL sign for cat, that is probably what they were going for.

For example, the signs for pig and frog are supposed to be done with your hand under your chin. Well, Calvin apparently can't find his chin (can't blame him, he barely has a chin!), so he does those signs on his opposite wrist. Weird. Whatever. He knows what he's saying and I know what he's saying.

Keep modeling the signs correctly yourself to reinforce the correct way of doing it, and eventually they will find their chin. Or start talking. Whichever comes first ;) I think making an effort to teach the signs correctly shows respect for ASL as a real language used by many people. Also, I don't want to accidentally say a swear word in ASL in public by doing a sign the way my kid does it!

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I hope this post is helpful! I'm not an expert, I never studied any of this formally, but I'm a busy mama with a speech-delayed kid and our family has had a lot of success with sign language. Please add tips and resources if you have any to share!

Two Little Too Little Boys

We had a double header doctor appointment with our pediatrician on Monday. We doubled up Calvin's 2 year check up with Henry's 9 month check up. Neither of them gained any weight since their last check ups (Henry since beginning of March, Calvin since January). Their height growth was minimal. This is a problem. We are having Calvin's growth hormone checked again to see if that could be causing his plateau. It always seems to me like he's eating enough... he goes through picky phases, but it sounds like that is normal. Guess it's back to sneaking coconut oil into his meals. We'll see if his growth hormone level is still normal.

For Henry, it's a little complicated. He enjoys eating, but he's only able to eat small amounts at each meal.  He is spitting up or throwing up almost everyday and I'm about at my wits' end over it. It could be his reflux, so, as I've been instructed by our GI doctor and our OT, I am working with his Prevacid dosage to see if it will help. Sometimes it happens mid-meal and it looks like the food was just too thick and came right back up. His OT said it's possible that his hypotonia is causing slowness in his esophagus and making it hard for him to digest thicker purees. So I also have to be really careful about the consistency of his food.  He has a swallow study next week in which they will use an x-ray video to see how his mouth/throat/esophagus are functioning while he eats and drinks.

He still drinks formula, and had been drinking 24 cal/oz formula (normal formula is about 20 cal/oz) since December. It helped for a while, but now it looks like it's not enough because he still just isn't taking in the volume that he needs. I swear I'm feeding him as much as I feel like I can. But I am constantly worried that if I overfeed him he will vomit. And if he's refusing to drink I can't force him. We met with a nutritionist about a month ago and she encouraged me to add oils to his baby food. So I've been fattening up his purees with olive oil, coconut oil, and butter. I was hopeful that it would have made a difference, but per Monday's check up it hasn't helped so far. So his pediatrician told me to up the formula to 27cal/oz.

I have been through this over and over again with both boys. The baby is not gaining weight. So we dive into trial and error with ways of feeding and amounts to feed and what to feed. And it feels as though it all falls on me, the exhausted mama, feeling like a failure because - wasn't it my job to make these babies grow? Isn't that kind of my only job? And clearly I'm not doing it very well.

Our pediatrician told me not to be so hard on myself. She said we don't know what their limitations are because of their genetic syndromes. She is actually the first doctor to immediately consider their genetics before their diets when it came to not gaining weight. All our other doctors have immediately responded with more formula, more food, more fats, more calories. And of course that is the way to make a kid gain weight. But our doctor responded by suggesting a growth hormone check and a swallow study. And then later she said to go ahead and up the calories of the formula. But she wanted to first try to find out what they are even capable of in terms of growing and eating. And it was nice for once to not have the doctor's response feel like they are saying, You're not doing enough. Do more. Instead she seemed to be saying, You are trying and it's not working. We'll find out why not.

Deep breath and another laundry load of pukey pajamas and pee pee pants.

And Sat And Sat And Sat And Sat

And the book of the week at our house is... !

Yes, we have entered into a new world of potty training! Just like Joshua in the book sat and sat and sat and sat on his potty, Calvin has been doing some sitting and sitting and sitting on his and we, his parents, have sat and sat and sat with him. We're using an approach from the book Oh Crap. Potty Training by Jamie Glowacki which we heard about through our friend Rachel who had only good things to say about it after using it as a guide to potty train her son about a year ago. 

I read the book and I think it is awesome and I think Jamie Glowacki is awesome. I didn't bother reading any other potty training books or asking for other potty training advice. The way she lays it out and the way she talks about parenting in general resonates with me and with James so we like it, we went with it and we'd  recommend it. Basically you start by watching your kid very closely to learn his "tell" or sign that pee or poop is coming so that you can help prompt him to use the potty even before he is able to initiate going to the potty. Then eventually the kid goes from having no clue that he is even peeing to being able to tell the feeling of needing to go and knowing what to do about it (with some steps in between, of course). The book has lots of really helpful information and tips and it's all written in a very honest, down-to-earth tone.

It's been 6 days and we are not accident-free, but The Bean is doing great and I fully believe that he is getting it and that the bumps we're hitting will smooth out. He generally tell when he needs to go and he definitely tries to make it - he just doesn't always quite get there! The first two days were so. hard. I did not expect my own feelings about the process in the beginning. I did not think I was going to panic when he didn't pick it up as quickly as I'd hoped and I definitely didn't think it was going to make me feel so insecure about my ability as a parent! The thing about the Oh Crap book is that it says very clearly that the secret to potty training is the parents. Meaning that parents really have to be committed to the process and mindful of how they are playing their role in potty training. Which I took to mean that if things are not perfect it is all my fault. And it kind of is... but in a very I'm only human way, so I am reminding myself that he and I are both learning and its ok if we both need a little longer to get the hang of things. It just means more time and more laundry. And the occasional floor clean up. 

Rachel's son had picked it up really quickly and I really put pressure on myself because I felt that they were a tough act to follow. I didn't want it to be like "oh well, Calvin's special  so of course he took longer to figure it out..." Even if... in a way... that is true. But it's not because he is special. I don't think it has to do with 22Q or developmental delay or his age. He just takes his time to take things in. He's always been that way. He may be brave enough to slide the big slides with the big kids but he is not reckless, in fact he's very thoughtful and even cautious. To stick with the slides example, we didn't explicitly teach him to slide the way he does - on his belly, feet first. He started doing that on his own, presumably because it feels safer. He's a smart little cookie, he just takes it slow to get it right. And like I said, it's really more about me getting the hang of how to be there for him as he's learning this weird new thing. 

On top of learning to use the potty, our big boy has also been saying more words! It's tough to understand him, because he leaves out most consonants, especially initial consonants, but he's definitely talking more. He's saying inside and outside, owl (which is easy because there are no hard consonants!), jump, up, and out. He will also randomly say or repeat other words, but those are the ones he's pretty consistent with. The ball is rolling very slowly on getting him started with speech therapy (we got bogged down when our regional center case worker left and we are now working with an interim case worker), and he's definitely going to need it, but he's already making some progress on his own. 

I remember that in February and March last year, Calvin went through this crazy awesome development burst where he learned to scoot, commando crawl, sit himself up, then crawl on hands and knees all in the span of a few weeks. It felt like he wanted to catch up at the last minute before his first birthday. It feels a little like that now, like he's making a final sprint to his second birthday as if to show us all that he is indeed a big boy and he's more than ready to be two!

Pride and Perspective

Yesterday I took the boys to this awesome indoor playground in the Bay Area called La Petite Playhouse with some friends. Calvin had fallen asleep on the way there and when he stumbled in, still sleep-groggy, he stopped in his tracks and stared wide-eyed at the ocean-themed play wonderland before him. He stayed that way for at least 15 minutes while I kind of dragged him around to pay our admission, take off our shoes, wash our hands, and get Henry some milk (Henry, meanwhile, was kindly letting me know he wanted milk with an escalating whine). This is actually typical for Calvin, he needs some time to adjust to new places, especially really really stimulating and exciting new places!

After Calvin recovered from the shock, he took off into the toddler play area. Soon enough he left the toddler corral and ventured out into the bigger parts of the structure. He was so excited that everywhere he went he ran as fast as he could on those tiny legs and feet! He climbed up and down and over things. He slid down the slides in the toddler area and he even slid down the big slides!

Some of the parents were surprised that I asked them to let him slide by himself, 

but actually it's much safer for kids to slide alone than on adults laps. 

James and I were getting misty-eyed watching those videos that evening. Of course James, poor working dad, had missed out on the fun. But the reason those videos mean so much to us is that it wasn't that long ago that we were worrying about him ever learning to crawl, to walk, let alone run around and climb and slide like such a big boy! 

This is from one year ago, early March 2013, 

and he had only just figured out how to sit up from scooting/crawling.

Also from March 2013 just a couple of weeks after that previous video. 

He had moved on from "commando crawling" to crawling on hands and knees!

Oh and I remember those days of Gymboree (so, so pregnant with Henry btw), of coaxing and prodding him to inch his way along the baby obstacle courses while kids younger and bigger than him blew past us. Not that I wasn't proud of him then! I was! He made amazing progress at Gymboree and I am still super super proud of how well he did. But back then I could not imagine the awesome kid he is now! 

Calvin with Granny and Mama at Gymboree on his 1st birthday

He is so much like a typically developing toddler. (Actually we think he's more awesome than typically developing todders!) Except for the talking... But I know, I know it will come. I know it in my heart. I fully believe in this little dude and I will support him every inch of the way. Even when that means stepping back and letting him be who he is, where he is, how he is - without any pressure. 

If I'm being totally honest, my feelings of pride about Calvin are weighed down by worries about Henry. I feel like Calvin made it! He did it! *Huge sigh of relief.* Calvin can run and jump and play with the big kids. But when I think of Henry I am still so afraid. He is more delayed than Calvin was and it is to be expected that he will need a much much longer runway. But what am I afraid of? Henry will do those things too, in his own way, in his own time. Still, I think I'm afraid of how hard it will be on him, and selfishly, how hard it will be on me. It's not about comparing him to his peers. I actually think I'm much less stressed about comparing Henry to his peers than I was about Calvin for a long time. It's about comparing him to his potential. What he might be able to do one day seems so so so so far away. And then the big bad deep dark fear: what if he never gets there? How will he be a happy kid if he can't run and jump and play with his brother? 

It's too much. I have to let those scary questions go. Over and over again, each time they resurface. It's so hard. But the thing that eases all those fears more than anything else is just being with Henry. He is happy now. He is well. He is sweet. Over and over again his smiles and kicks and gurgles tell me to stop trying to see ahead and to just look at him now.

So look at them both! They are amazing. 

Calvin Wellness Update: Head Heart and Hands

As Calvin has gotten older, his specialist check-ups have gotten more spaced out. This is a big relief, especially because Henry is having so many appointments these days! I'll write a wellness update on Henry in a few days after the two appointments he has coming up this week. For now, here's the latest on Calvin after his recent Cardiology and Speech check ups.

Cardiology

Calvin is having an echo-cardiogram done. He was such a good patient! Thanks to Mickey Mouse ;)

His last cardiology check up was in January. They have been monitoring his VSD since he was about a month old. His appointment always starts with an echo-cardiogram, and on occasion he has also had an EKG, but not this time. The last echo he had at around 12 months old was tough. He was too little to watch TV and he was restless and wiggly. But this time he laid there very still and calm and just watched Mickey Mouse Clubhouse. (Ok, technically he's still too little to watch TV but whatever. Small doses.) They were able to get all the images they needed to check out all the parts of his heart and how his heart is functioning.

The news was good. Not the best possible news, but say, second best. The best news would be that his VSD is closing on its own. It's not. BUT, his heart is functioning basically as if it weren't there. It's not affecting him in any negative or problematic way. His doc said that as long as that continues to be the case, it won't need to be closed (surgically). She even went so far as to say she doubts it will ever need to be closed. She also said that if the time comes that it is causing problems he is likely a candidate for a less invasive procedure using a catheter device which would allow us to avoid open heart surgery. But again, it does NOT require surgery right now or in the foreseeable future. He doesn't have to have a cardiology check up again until he turns 4! Woo hoo!


Speech 
Calvin had a speech evaluation done last week with his SLP (speech and language pathologist), Dr. Johnson.

Dr. Johnson and a student doctor (sorry, I don't remember her actual title!) gave Calvin a standardized evaluation that tested both his receptive and expressive language. There were some pictures involved and also some toys and they would say things like "Calvin, could you please hand me the bear?" [Calvin hands bear to doctor.] and "Mr. Bear is thirsty. Could you give him a drink?" [Calvin pretends to let the bear drink from a cup.] Or they would point to something and ask him to name it, and of course he answered in sign language. He did great. There were a couple of items he hadn't really seen before like a cookie (ha.) and ice cubes. The docs seemed impressed with how well he did. Plus they seemed to think he was adorable. Which, of course, he is ;)

They told me that the average score for the test is 100 and they hoped for him to score between 80 and 115. He scored 100 exactly for receptive language. Which I guess is a C? But whatever. The docs were impressed. I was proud of him. For his expressive language, however, he only scored 70. This makes sense. He only has two words that he consistently says out loud, although at last count he knows over 90 signs. I don't know to what extent the test took into account his signing, but they did tell me it was helpful for me to interpret whenever I could tell he was saying something in sign language.

Without knowing more about the test, the scores don't mean that much to me. What is important to me is that Dr. Johnson is recommending speech therapy due to the big gap between what he understands/knows and what he can say out loud. He babbles all the right sounds, including sounds that they weren't sure he'd be able to make because of his cleft palate muscles, but he won't imitate sounds on command. Dr. Johnson seemed to think that with some focused practice via speech therapy, if we can get him to start imitating sounds he could pick up talking quickly. I think she's right. I think he's so close. He knows so many words and he can make the sounds. But for some reason he's just not ready/willing to put it all together! The next step is to talk to our regional center case worker about getting set up with a speech therapist nearby because Dr. Johnson is too far away for us to see her for regular therapy. I feel good about it. I think it's the right thing for Calvin and I'm eager for him to get started.

Sign Language
Though he is still only saying mama (it sounds like "mam") and daddy (sounds like "da-yee") and occasionally other m-words like milk and map, we continue to be amazed by his use of sign language. His sign vocabulary is growing as quickly as I can learn new signs to teach him. Almost 100 signs! And he has started signing sentences! The sentences are missing "core" vocabulary (words like the, of, and...), but they are still complete thoughts.

The first time I noticed him make a three-word sentence he was eating lunch and had this little bear toy from his Duplo set at the table with him. He signed bread eat bear. And proceeded to pretend to make the bear take bites of his sandwich complete with sound effects p-p-p-p-p! The words seem to be out of order, "bear eat bread" might make more sense, unless he was saying "The bread is eaten by the bear," but I definitely got what he meant! Since then I've seen him sign other three-word sentences like Help Piggie, please, when his stuffed animal Piggie has gotten stuck somewhere or Eat more banana, when he wants his favorite food :)

Yesterday we spent the morning at the Academy of Sciences in San Francisco and we saw lots of animals in the rainforest, aquarium, and Africa exhibits. Later as we were getting ready for bed, I asked him if he'd had fun and I asked him what he saw there. He told me fish, bird, penguin, butterfly, horse, alligator and frog. All of which we did see, except a horse, but he had been calling the zebra a horse so I think that's what he meant! I was so proud of him for remembering and being able to understand the question and tell me all those animals!

James and Calvin butterfly watching in the rainforest exhibit

And then this morning:
Calvin: alligator turtle
Me: Alligator? Turtle? Did you see an alligator and some turtles yesterday?
Calvin: alligator turtle eat
Me: Eat? ... Bite? Did the turtle bite the alligator?
Calvin: [nodding] turtle eat alligator

And he's right! There was a turtle biting the alligator's tail! Delayed speech or not, I think he is such a smartie.

It is wonderful that he is able to communicate so well. I am optimistic for him learning to talk this year, but I know he will do it in his own sweet time like everything else :) In the meantime, I am considering letting him try out an AAC (adaptive and augmentative communication) app. Dr. Johnson said there was no harm there. It would make it easier for him to talk to other people who aren't familiar with his sign language and it might open up an opportunity for him to express more thoughts than he is able to with signs and even start using core words? It's possible. Also, it is very likely that Henry would benefit from an AAC app in the future. I started looking into apps, but I have hit a couple of roadblocks. The apps that really look the best are very expensive, like Speak for Yourself at $200. Also, the tablet we have is only 7" and on that size tablet the buttons on some of the apps are very small. I'm almost willing to spring for SFY, but I feel like I'd also have to buy a new tablet and the cost for both would be a lot for us.  I'm trying to find a good starter app, preferably free, with a happy medium between the size of the buttons and the number of words on each screen. If anyone has suggestions, please share!

Keeping it Together (in a 3-Ring Binder)

We had a medical appointment every week in January. Last week we had Henry's therapy evaluation the same day as his sleep study! This week we had Calvin's cardiology check up. In February and March we have upcoming appointments with: speech & language pathology (Calvin), ENT (Henry), neurology (Henry), and our pediatrician (Henry). I am waiting to hear back to schedule appointments with a feeding specialist (Henry), a physical therapist (Henry), nephrology (Calvin), and endocrinology (Calvin).

I know, right?

Keeping up with the scheduling is crazy. Keeping up with the info from all of our specialists is even more crazy. At every medical appointment, the doctor/nurse/therapist asks questions about the other specialists and past appointments. It's important for me to have information on hand about both boys' medical histories including their (long) list of doctors and scheduled appointments. It's way too much to keep straight in my brain!

To keep all this crap everything organized, I took the advice I read in the Special Needs Parent Handbook and I put together a binder.

I made one binder for both boys and I divided into these 5 sections:
1. Calendar & Contacts
2. Calvin Medical
3. Calvin Services
4. Henry Medical
5. Henry Services

Under Calendar & Contacts, I have:
- Calendar pages for the whole year so that I can easily jot down future appointments. James and I keep shared Google calendars for both boys, but it is nice to have a paper copy to look at and to keep with the rest of our paperwork. So I make sure to keep both the online and paper calendars updated. It's not that big of a deal, and it's handy to have both.
- Two pages of contact information. The first page lists caregivers and social workers: name, relationship or organization, and phone number. Since our boys have sooooo many doctors, the second page has spreadsheets of contact info for all our doctors: one table for Calvin's doctors and a second table for Henry's on the same page. The tables include each doctor's name, specialty, medical center affiliation, as well as the phone and fax numbers for their departments. Here's what a contact info sheet might look like  for a kid with fewer doctors than mine :)

Under the Medical tabs I keep:
- A copy of the test results indicating their diagnoses (22Q Deletion and Dup15q)
- A table listing important events in their medical histories along with date and location. This includes things like their births, procedures, surgery, tests and diagnoses.
- Immunization records
- Growth charts
- Prescription info
- Handouts from the doctors
- Blank paper for taking notes during appointments
- My own notes from past appointments

Under the Services tabs I keep/would keep*:
- Paperwork from/about our regional center
- Paperwork from/about insurance to cover therapy
- Notes from therapy evaluations
- Notes and handouts from therapists*
- Info about classes and groups that might be beneficial

*I say would keep because neither of the boys is currently receiving therapy.

Lastly, I have a pocket in the back that holds the boys' insurance cards and some sticky notes.

In the future, I can transfer papers from the binder into our family filing cabinet as they become outdated. It may eventually become necessary to have a binder for each kid (I hope not!). If I was keeping a binder for each kid, I might make a section for each specialty. Or do something like this:

1. Schedule & Calendar
2. Contacts
3. Medical History
4. Recent Appointments
5. Services (classes/groups/therapy)

The Binder is definitely helping me keep it all together - literally and figuratively :)

It keeps the sheer number of doctors and appointments from overwhelming me. It gives me a place to stick all the paperwork I don't know what to do with, but think I might need again. It has been so helpful at all our appointments since I put it together.

When I brought it to our first appointment with the new pediatrician, her secretary made a photocopy of the page with the spreadsheets of contact info for our doctors. They were impressed. The doctor even literally said that I was very impressive. Not that the binder was very impressive, but that I was. And I thought, thank God I at least look like I've got it together! But I felt really proud of myself. I'm proud of that dang binder! I feel like it is concrete evidence that I've got something together, even if I don't have everything together. And some days, that's a really nice reminder!

Talking Hands

When Calvin was 6 months old, James and I took him to a series of baby sign language classes. The classes were really more for us than for him. Typically babies who are introduced to signs around that age start using the signs themselves around 10 months. Calvin started using signs right around his first birthday.

A big part of our motivation to teach him baby signs was the fact that 22Q deletion syndrome is typically associated with delayed language development. Somehow the signs are easier for these kiddos to learn and they can use them to communicate when they aren't yet able to use words.

Calvin's very first sign was "more" and the first few signs he used all had to do with food: more, milk, water, cereal, and please. Later he started learning other nouns like animal names, foods, and things around the house like books and toys.

Here are two videos of him at 16 months where you can see him use the signs for "book" and "please." Around that time he was using the sign "please" often to ask for things, and it was great to see him signing, but it was also hard because he didn't always know the sign for the thing he was asking for. That's one of the two big limitations of the baby signing that I've found. The other limitation is that, because of his developing motor skills, the way he does the signs doesn't look like the adult version and some of his signs for different things look identical. We just have to use the context of the situation and do our best to figure it out. For example, the way he signs duck looks just like milk, but if we're playing with toys there's a good chance he wants his toy duck whereas if it's during a meal it's definitely milk. I imagine that it's not that different from interpreting "baby talk."

At his 18 month check up in October, he still was not using any verbal words. He was babbling lots of sounds and had demonstrated about 20 signs, but no words. His use of signing showed that he was able to communicate and that cognitively he is using and understanding language. But it looks like he will need some help developing verbal speech. We started talking about speech therapy with his pediatrician and with our case worker from Golden Gate Regional Center (an organization that will help hook us up with therapy services if/when Calvin needs them). He has an appointment with the speech and language specialists at Stanford (add that department to the team of specialists already following him!) in February, and I think he'll likely start speech therapy after that.

In the month since that appointment, I am very excited to report that he has started saying "mama" and "daddy" consistently enough to be sure that they're real words and not just babbles! It is so wonderful to hear him call me mama for the first time. Feels like it was a long time coming. There are a couple of other words that he sometimes says (or sort of says...), but not as consistently. Those are ball, milk, more, hey, duck, and "all done."

Here's a little video of his few words and a few of the signs he knows. I hate that it's a crappy phone vid, but I am very pleased to share it!

Haha. I blanked on what other signs he knows! I estimate that he uses over 30 signs. Here are all that I could think of :)

more, milk, water, food, bread, banana, grapes, cracker, cereal, please, all done, down, help, toys, play, dance, book, music, mom, dad, Lola (grandmother), Henry, duck, pig, dog, cat, bird, elephant, car, tree, bed, awesome, and (please don't judge me!) Mickey Mouse and  Sesame Street!

We're proud of our little guy, and we're so glad that we decided to teach him sign language! It's a relief to know that he is learning and communicating in his own way.

Wellness Update

Lots of check-ups and appointments at our house! 

Over the past few months, Calvin has had another round of check-ups with all his medical specialists. They all said he's doing great! A couple of them want to see him again; a couple of them said they don't need to see him unless something comes up. He does need one more hernia surgery and there are a couple other possible surgeries in his future. His general health and development are looking good. 

Here's a breakdown of the specialists he saw:

Cardiology - His heart murmur seems unchanged. The VSD (tiny hole in the tissue between his ventricles) isn't closing on its own (boo), but it still could (fingers crossed!). It isn't affecting his heart functioning or anything else about his health (yay!). If it doesn't start to close within the next year or so, they will likely recommend surgery to close it. 

Endocrinology - Kids with Calvin's chromosome deletion often have thyroid problems or low calcium levels. They can also have low growth hormone. All Calvin's tests once again reassured us that his thyroid is functioning fine and his calcium levels are also fine. He is super tiny for his age (less than the 1st percentile!), but given that James and I are on the average-to-short side, the doc said it's not likely a growth hormone deficiency. She said she doesn't need to see Calvin anymore unless something concerning happens like a prolonged illness or a surgery complication related to thyroid function or calcium level. 

Immunology - Immunological problems are also associated with 22Q deletion. A new series of blood tests showed that his immune system is functioning fine! He was even cleared to receive live vaccines for the first time, just in time to get the MMR and Varicella shots at his 12-month check-up. Just like with endocrinology, the doc said he doesn't need to see Calvin anymore unless something concerning happens like a prolonged illness. 

Plastic Surgery - Calvin's previous doctors suspected that he had a submucosal cleft palate (which prevented him from being able to breastfeed), but until this check-up no one had actually confirmed it. His new doc was able to get a good look at his palate at last and confirm that he does actually have that type of cleft (it's not an open cleft, it's where the muscles of the palate are shaped differently and work differently from what you'd see in a "normal" person). The surgeon said it won't affect his eating from here on out but it may affect his speech. If his speech development is affected, they will recommend surgery but they don't make that determination until kids are 3 or 4. 

General Surgery - Calvin has one more hernia to be repaired that was missed in his first surgery last August. Frustrating. It's just above his belly button. It doesn't need urgent repair, but it won't close on its own so we decided to wait a little bit longer and let Calvin get bigger and stronger before another procedure. 

Audiology - Because palate muscles are connected to muscles in the inner ear pretty closely in tiny kiddos, Calvin had an extra hearing test. He passed with flying colors. His hearing is just fine!

 Nephrology - (Kidney doctor) Calvin had his kidneys checked when he was a newborn because his umbilical cord was a 2VC (2 vessel cord: 1 artery, 1 vein whereas there are usually 2 arteries and 1 vein) and that is sometimes associated with kidney problems because the kidneys develop at the same time as the umbilical vessels in utero (or something like that). Anyway, at that newborn kidney check the ultrasound showed that his kidneys were slightly enlarged. So they did another ultrasound to check the growth of his kidneys and sure enough they are still a little bit big for his tiny body but they are functioning fine so it doesn't seem to be a problem. They're going to check them again in a few months. 

Pediatrician - Last but not least, his pediatrician says he is doing great. He's tiny, but growing at the same rate as other kids. His development is looking good. He's ready to start weaning from the bottle and drinking cow milk instead of formula. And he got his 12 month vaccines. 

This week he woke up with a rash that came along with a low fever. We thought it was a reaction to one of the vaccines, but when we took him back to the pediatrician she said it was hives from an allergic reaction. Benadryl cleared it right up. Don't know what food triggered it, but the doc said not to stress about it unless it happens again.

James had his broken clavicle repaired with surgery last Friday. They re-set the bones and put in a plate to hold them together. He'll have his right arm in a sling for 6 weeks. He didn't need surgery on the wrist. They put him in a cast last week and the cast comes off next week to be replaced by a wrist brace for a couple of weeks. He's got appointments with both his shoulder and wrist doctors next week. 

He is recovering from the surgery well and needing his pain meds less and less which is a big relief. He says the worst thing is that the plastic bandages over the incision site are really uncomfortable. He'll have to put up with them until he sees the surgeon for the follow-up next week. 

And me? I'm doing fine :) Busy taking care of these boys, but trying not to take on too much so that I get some rest for myself. The pregnancy is progressing well. My midwife, Michelle,  is coming every other week to check on me and the new baby now that I am in my third trimester. Baby brother is kicking and moving around a lot, especially at night when I am trying to sleep! His heartbeat is always strong when we listen to it on Michelle's fetoscope and fetal doppler. I was having some problems with dehydration a couple of months ago, but I have been able to stay better hydrated by drinking a few electrolyte-rich drinks throughout the week in addition to water instead of just plain water like I'd been drinking (I stick with mostly coconut water to get my electrolytes). 

So Calvin's doing great and will have future chek-ups with some of his specialists. James is on the mend and should have the use of both arms again in time for baby brother's arrival. Baby brother seems to be doing well and I am feeling fine (if tired... but come on, I'm a mom! A mom to a baby and one more on the way! I can hardly complain about feeling tired - I'm pretty sure it's in the job description!).