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Thursday, March 20, 2014

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!

Wednesday, March 12, 2014

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. 

Thursday, March 6, 2014

Henry Wellness Update: Little by Little, Day by Day

Henry is doing well :) We see him getting stronger little by little every day. He is doing a much better job holding his torso straight when he's carried upright and he can sit in the Bumbo for short periods, whereas before he would slump over immediately.

Concentrating so hard!
He is still smiley and happy most of the time (as long as Mama is within sight!), especially now that he has figured out how to reach his feet! Oh he loves grabbing his little toesies! I don't blame him. Those baby feet are adorbs.

Here are some updates from Henry's specialists...

James and I had questions/concerns about the possibility of seizures, which are associated with Dup15q. The neurologist told us what signs would indicate a seizure and what to do in the event that one happens. So far, Henry has not had any episodes that look like seizures. The neurologist also checked out Henry's moves and explained that his occasional jerky movement is a sign of his immature motor skills. She said it's like his brain is figuring out which movements are needed to do what he wants to do and he still has lots of "extra movements" like a younger baby. This was about a month ago and I already see less of those jerky movements.

ENT (Ear Nose & Throat) 
Henry's ENT diagnosed him with acid reflux in December when he found that Henry's throat was very irritated because of the acid. Henry has been taking Prevacid for the reflux since then and it is definitely helping. The ENT, Dr. Chang, noted that Henry's voice sounds normal now that the reflux isn't irritating his throat. He also said that reflux usually improves on its own in older babies: as the digestive system grows stronger the sphincter can keep the acid from going back up. So he said we can expect Henry's to improve in a few months and then we can wean Henry off the medicine. I said, what about his hypotonia? - will that prevent his digestive system from improving? And Dr. Chang said that Henry's hypotonia is not that bad. This is something we have been consistently hearing, and it is always reassuring to hear! His hypotonia is not severe. He is doing ok and he will continue to get stronger.

Dr. Chang also talked to me about the results of the sleep study. They did observe a small degree of sleep apnea, but his oxygen levels remained high throughout the night so Dr. Chang doesn't feel any treatment is needed. I agree. Henry generally sleeps fine and we don't notice any snoring anymore.

Physical Therapy
Henry had an evaluation with a PT named Anna and she used a standardized evaluation to determine the degree to which Henry is or isn't delayed in motor development for his age. In order to qualify for therapy (I guess its a CA guideline?) he has to be 33% delayed... I have no idea what that means in practical terms! I guess it's like, if he's 6 months old he would have to be functioning like a 4 month old? Which actually seems about right.

Anna did some exercises with Henry and checked out his movements and muscles and stuff. Unfortunately she wasn't able to give us the evaluation results immediately, she needed to take her notes home to score it and we are still waiting to hear from our regional center case worker whether or not he qualifies for therapy. I'm not sure whether to hope he qualifies! On the one hand, it's great if he's not that delayed... on the other hand, I want the help for him!

Like Rosie did at Henry's regional center evaluation, Anna showed me some exercises I can do with Henry and some ideas for how to support him using pillows to help him sit up.

Feeding Specialist (Occupational Therapy)
We had been trying to get this appointment for MONTHS. We really needed it when Henry was switching to bottle feeding, but at least the timing worked out that the OT was able to help us with introducing solids. Her name is Dr. Van Boldrick. She observed Henry drinking from his bottle and talked to us about what to look and listen for to tell if he is drinking efficiently. She gave us a different bottle to try with a smaller nipple that she felt would be easier for him. Seems the same to me... 

We waited to give Henry his first solid food (if you can call prune puree "solid" ;) at this appointment with Dr. Van Boldrick. Because of the hypotonia, we just didn't know how Henry would handle swallowing something thicker than milk. So, to be safe, we waited until we were with the OT. And Henry did awesome! He opened his mouth for the spoon, used his lips to scrape the food off, and there was no choking or gagging or spitting at all! What was I worried about?? James and I both noted that it went so much better than the first time we tried to give Calvin food!

Dr. Van Boldrick said that since he did so well, she recommends offering him purees once a day. She said to give him whatever amount he is interested in eating within a 5-15 minute window. She also said that we need to move on to introducing thicker purees when he turns 9 months. She explained that babies need to learn to get used to the textures of food in their mouth at certain milestones even if they are just spitting them back out. I wish we had been told that when Calvin was a baby! But he's a pretty good eater now... most of the time :)

Our cousin Hartley helped me get some pics and a video of Henry eating!

I'm very happy to report that Henry is doing so well :) It's such a relief to be able to see him getting stronger and starting to be able to do the things we hope for him. We watched him go from kicking a little, to starting to raise his legs up, to being able to grab at his knees, ankles, and finally grab those baby feet! It was a slower progression than with other babies, I'm sure, but it was still amazing to see. One of these days I'm sure he'll even get those toes to reach his mouth! I can feel him holding himself up stronger when I carry him and I see how much better he sits propped up. I know he'll be able to sit on his own soon enough! He is getting there! During tummy time he can prop himself up on his elbows and reach out for toys in front of him. He is still rolling from front to back, and from his back he can still only roll onto his side, but he is working on it and one of these days I know he'll roll all the way over! 

I feel like this time around it has been easier for me to let go of the idea that Henry needs to catch up or keep up with other babies his age. With Calvin it stressed me out more, but then, he was my first! With Henry, I feel like the bigger worries are farther in the future and I'm trying not to look that far ahead because there's really no way to see what we will find there. For now, I know he needs his own time and his own path, slow and steady, little by little, with some help and encouragement and a lot of celebration. 

Monday, March 3, 2014

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.

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!

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!