Tuesday, March 27, 2012

A New Trick!

Levi learned a new trick the other day. He managed to push himself up to a sitting position from his tummy. Of course he was under his swing when I saw it for the first time, so there was no hope of getting a video... but no worries, he's been practicing a LOT for the last two days and so I finally caught him in the act!


Saturday, March 24, 2012

Nine Months Old!

Another month down - and it was a great month, just as I had expected it would be! I swear it feels like I did last month's just a few days ago.

This month started off with the sleep study, which found that Levi was having episodes of apnea thanks to his GERD. The recommendation by the doctor was to add Zantac to his medication regimen. The problem is that his dosage of Zantac is 2 mL twice daily. The liquid is peppermint flavored, which all kids despise. And... this kid doesn't take anything without having it mixed into food. There's no way I can hide that much peppermint-flavored liquid. I inquired if there was any other prescription or formulary available but it appears there is not. So for the time being, I'm going to try to work with the Prilosec (which he's already on) to see if I can take care of the problem. To start with, I moved his dosing time from breakfast to dinner, so that it's most effective overnight while he's sleeping. I'm also trying to make sure he's not eating too big a meal all at once. That's hard to do, because the little guy is only awake about 10 hours per day - and has to eat 3 meals & nurse 3-4 times as well. He spends a LOT of time eating...

What'choo lookin' at?

And yet, he hasn't really been gaining any weight. In the last 3 months, he's only gained about a pound and a half - none in the last month. I'm hoping it doesn't have anything to do with his thyroid - and is instead related to burning off more calories than he's consuming since he's been so active with his crawling and rolling and such. He has another thyroid check in a few weeeks, after his next checkup, so we don't have long to wait and find out.

He's been doing really well with eating. He's tried all kinds of table food, cut into tiny bits of course. He enjoys baked sweet potatoes, pizza, hot dogs, peaches, baked potato with sour cream and sloppy joe, crockpot potatoes (cooked with pot roast) and toast with coconut oil. The only thing he seems to dislike is scrambled eggs!

Tough guy eats coconut toast...

Wagon wheels are okay too

I've also had a little luck with getting him to accept a beverage out of a cup/straw. He likes the Nuby sippy cup with a bite valve (because he likes to chew on everything). But... he seemed to be trying to figure out how to chew on it without getting liquid - it was really too big for him to get his lips around and hold to suck on it and bite at the same time to get a drink. So I switched to a Playtex Soft Spout sippy cup with a typical valve on it. He did okay once I took the valve out - he still doesn't seem to get that he's supposed to suck on it. Without the valve, he'll let a few drops into his mouth with his mouth around the spout and then swallow it. That's progress! Then a few days later, I tried the honey bear cup with a straw and he actually did swallow a few sips of that as well. (we've been doing watered-down juice only). His OT had pointed out some time ago that drinking from a cup is so different from nursing. With nursing, he has a very wide latch and the liquid comes directly to the back of the mouth. With a cup/straw, the liquid arrives in the front of the mouth and he has to control it and move it to the back of the mouth to be swallowed. So really, this is an entirely new process for him. I just have to keep giving him opportunities to practice and he'll get the hang of it soon, I'm sure. He'd probably be an expert already if I was persistent about it. But I only seem to remember once every couple of days!

Mantra: chew, chew, chew... grrr...

where'd all this green stuff come from?

His two lower central incisors (front teeth) finally came through starting on March 5th (36 weeks). It took about 2 1/2 weeks, but now you can plainly feel both teeth and see them pretty well too. Of course, it will probably be another month or so until they're up the whole way so that you can see them every time he smiles.

He was already mad - so I got in there and got proof of those sharp little teeth! Glad he hasn't gotten the idea to bite while nursing yet...I get a little nervous each time though!

Around 36 weeks, I did request to have his PT reassess his progress on the Early Intervention test that they use to determine how much of a developmental delay a child might have in any of the five areas they evaluate. His scores came out pretty much right where I expected - he was at 6 months in communication (he's certainly the strong, silent type), 7 months in cognitive, social-emotional and physical development and 8 months in adaptive behavior. To me, that says he's doing really well! Rumor has it that kids with Trisomy 21 sometimes plateau developmentally at around 8-10 months of age and that the gap between them and their typically-developing counterparts tends to widen at that time. This may be true for Levi; it may not. We won't know until we get there... and though I tend to focus a lot on numbers and short-term goals, I'm also going to try to remember that almost all kids with Trisomy 21 learn to do all the things their peers do... they just need a little extra support and time. I will need to remember to be extra patient (not one of my natural talents) and know that he too will get there... regardless of the time it takes.

I've mentioned this in my weekly posts, but I have to say it again... Levi is mobile! He can inchworm-crawl the whole way across a room if he's so inclined. Unfortunately, he realizes that it's a lot faster to roll most of the way there and then crawl the last foot or so. So we spend a lot of time trying to convince him that crawling is more fun...he's not buying it. Well maybe he is (a little)... on his own terms.

We've (his therapist and I) realized his weakness seems to be not so much in his arms as in his shoulders. So to strengthen this area in the hopes of making quadraped crawling a possibility sometime soon, we've been trying to encourage him to kneel with some weight on his straight arms. The problem is that if I do get him in that position, he almost always tries to straighten himself out - extending his back and doing the "superman." I knew we had nicknamed him Baby Superman for a good reason! He also needs to increase his abdominal strength to help hold himself up in a quadraped position. So it's lots of crunches and pushups for this kid's homework assignments!

He's thrown one other wrench in the works - he's figured out how to transition from stomach to sitting. He can't quite do it completely on his own as he needs a little help to lift his hip up... but he's doing 95% of it without assistance. That means that whenever I try to have him practice doing pushups, he flips his little foot out and voila! he's sitting. I think he's just doing whatever it takes to avoid being on hands and knees...

Still not much talking. He has taken to spending time yelling at the floor and occasionally a cat and less often, me. When he gets frustrated or is working really hard, he'll make raspberry noises. When he's bored or just wants to hear himself, he yells! Hubby swears he said, "Yep," once while he was playing with him. Who knows... as long as the doctor tells me his ears look clear and he contines to respond when we talk to him, I'm going to presume his hearing is still okay and that he's just too busy working on motor skills to bother with language yet. But I'll be keeping a close eye on it, nonetheless....

Wow! So much to say - but I think I've finally covered everything... see you soon!

Weight: 19 pounds, 12 ounces (~40th %)
Length: 28 inches (~40th %)
Head Circumference: 17.3 inches (~18th %)

Oops! An extra thought - he has realized that my phone can be something fun. If he's sitting on my lap when I'm doing something with it, he's grabbing and scrambling to have a chance to play with it. Typical of my kids. Love it!

Thursday, March 22, 2012

World Down Syndrome Day 2012

Yesterday was our first World Down syndrome Day! I was so excited to do something special that I ordered Levi a custom onesie...

I took Levi into Katelyn and Trevor's elementary classrooms to introduce him to their school mates. He was a hit - particularly with the teachers. I was all concerned about what I'd do with him while I was reading the book, "We'll Paint the Octopus Red," to the kids. I should've known better - those ladies were baby-hogs to the core. One of the student teachers even had to lecture the primary teacher about cooperating and sharing!

Anyhow - the kids enjoyed the book and asked lots of great questions about Down syndrome. Katelyn and Trevor were pleased to be able to show off their littlest brother and everyone enjoyed the snacks. I'm so glad we went!

I even found out that there is currently a child in the elementary school who has Down syndrome. I had asked this past summer when we completed Trevor's IEP, but I was told that there was not, only perhaps in the high school. (that person must not have been aware of her) Unfortunately, we didn't get to meet her - but I'm glad to know that the people I encountered today all seemed to really care for her personally and enjoy her as a person and a student. It made my heart glad.

I'm definitely looking forward to returning or planning something else fun for next year!

Monday, March 19, 2012

Too Cute for 2!!

Okay - not really... he's just the right amount of cute for being two years old!! Happy Birthday to The Destroyer! (also known as Evan) He's got a reputation for bringing mayhem with him wherever he goes, but he does it with a cheesy grin and a smile that lights up his whole face. This is probably the only reason that he's still allowed in the house. He's a classic example of a child being "too smart for their own good." But that's okay - we love him for ALL that he brings to the household.

Evan is 36 1/4 inches tall (~86th%), weighs 27 pounds (~38th%) and wears 2T clothing. He's got sandy blonde hair and deep blue eyes and despite being the odd man out in resembling his siblings, he looks just like his daddy did at his age!

Just one example of Evan-induced mayhem

Evan is definitely left-handed. The kid prefers the left for just about every activity. He can use a tripod grasp when using a writing tool, but will occasionally grip it in his fist if it suits him. He's a super-active kiddo who wants to be outside all the time and loves to climb and run and operate all the tools/equipment he comes across (doors, locks, pencils, etc...) He only slows down for a little while if he's watching one of his beloved DVDs. He learned all his letters, numbers, colors and shapes by watching videos from a Preschool Prep collection. Once he soaked up all of that, he pursued the 3 Sight Words videos that came with the set. I couldn't have cared less if he got interested in learning to read yet - after all he was only one. But his older siblings wanted to watch and so he did too. And the next thing I know, he's reading the words he learned on the flashcards that came with the set. Then he would ask to watch the DVDs and he learned ALL the words in the set. I'm still impressed with that.

Once he exhausted that source of information, I started giving him DVDs from another early-reading set we had looked into. He's fascinated and I suppose I'll no longer be surprised if he's suddenly reading those "harder" words sometime in the near future.

He has recently become a pacifier addict. In the last few weeks, he went from sleeping with a single pacifier to having one in his mouth and another in each hand for a total of three! I'm not sure when he realized this was a possibility ~ probably sometime when he was sick and I encouraged him to use a pacifier outside of naptime to keep him from putting every toy he encountered into his mouth. At least he's relearning that the paci's are for sleeping only and doesn't scream at me all day to give them to him.

Speaking of screaming - his stubborn side has certainly been showing lately. He refuses to eat most of the food we offer. He will stand at the back door and petition to be taken out to play (loudly and often). Hopefully at some point in the not-too-distant future, this will turn into determination and persistence in a positive way. Until then, I'm covering my ears and waiting it out!

He loves books and is labeling things like crazy. His speech has come such a long, long way since beginning therapy six months ago. His therapist is really great (yes, I adore her) and I will miss our weekly "playdates" to help Evan further his skills ~ but the reality is that he's doing SO well, there's no way I see him qualifying for services when he's reassessed in another six months. In the meantime, his therapy is shifting from weekly appointments to bi-weekly visits to free up the therapists schedule to help other kids and because we'll likely be much busier with all our other playdates and activities through the spring and summer. If he doesn't need to be seen every week, so much the better!

He is a clown to the core, but also, Evan loves to love on everyone lately. He shows affection to Mom, Dad, the cats and his siblings... This is my absolute favorite though. It makes my heart melt!

I am so excited to see what this next year has in store for Evan. I've said it before and I'll say it again - I've never met a Pisces I didn't like... Evan is proving my rule to be true. Despite our disagreements on diaper changes and eating and the like, we're buddies through and through. He is still my pookie-bear!

Wednesday, March 14, 2012

(almost) Wordless Wednesday

Can't believe this guy's last day of being one is tomorrow...

Saturday, March 10, 2012

In & Out Day

Levi is 37 weeks and 1 day old today. To me, it's significant, because he's been "out" as long as he was "in." I certainly never expected to deliver him that early and at that moment, I didn't feel ready... but it all worked out just fine and now we're closer than I want to be to his first birthday and time just keeps marching forward ever-faster...

This week, Levi finally gained enough strength and coordination in his upper body to be able to propel himself forward across the floor. I wouldn't quite call it army crawling - more like inchworming - but he can go! And he knows it! It's great to see him notice a toy from a few feet away and dedicate himself to (eventually) getting over to investigate. He does like to roll a lot and so I'll often see him combine the two moves to get where he's going!

I finally got in touch with the sleep study doctor. He confirmed that Levi had 36 periods of apnea during his sleep study two weeks ago. His oxygen saturation level dropped into the 80's during these periods and he was very restless, kicking around over 200 times. Overall, Levi only slept for about 80% of the night, so this is clearly affecting the quality of his sleep. Becuse no obstruction was detected, the conclusion is that this is a central-type of apnea, related specifically to Levi's reflux. He's already taking Prilosec (a proton-pump inhibitor) daily, so it seems we'll need to put him on another medication such as Zantac and also work with lifestyle changes such as not eating too close to bedtime and creating an inclined position for sleeping in the crib. Thankfully, this means we shouldn't be looking at surgery - but at the same time, it's not a clear-cut answer on how to solve the problem. Also, I don't know how I'll be sure that he's sleeping more restfully except that maybe he'll start sleeping through the night more often than he does now. Of course, the other kids began sleeping through when they dropped their overnight feeding, which was right around 9 months. Coincidence? Possibly - we'll see...

I asked his physical therapist to do a quick assessment of where he is developmentally when he had his therapy session this week. I expected to see some delays compared to typically-developing peers, but hoped that he wasn't more than a month or two behind at this point in time. I was pleasantly unsurprised to see that he came out at 6 months for communication (just like my other kids would have at his age - they were all more focused on gross motor stuff), 7 months for cognitive, social-emotional and physical development and 8 months for adaptive behavior. As I suspected, he's doing great! - Go Levi!

Today for dinner, we had something I was able to easily share with Levi without any alterations... a baked potato with sloppy joe, sour cream and shredded cheese. He ate about half of what I offered him and although he initially appeared a little confused about the texture of the beef, he seems to ultimately enjoy it and ate about a teaspoon's worth. I need to remember that it's time to make more of an effort to make sure he's getting more and more table food and less purees.

Levi did have another growth spurt this week. I thought  he might have after he slept all the way through two nights in a row!

Oh, and his teeth - these teeth are the bane of my existance. Okay, not really... but this process is frustrating to me! They started coming in weeks ago and though the edge is finally through the gums, they're still not up far enough to see. Drat! My hope is that by next weekend, I'll have something white to look at (and photograph). Stay tuned... Levi's been pretty good about the whole ordeal. No drooling, no major tears, just lots and lots of chewing on anything he can get into his mouth.

Here's the scoop at 8 1/2 months!

Weight: 19 pounds, 10 ounces (I suspect now that he's moving so much his gains will probably be much slower here)
Length: 28 inches
Head Circumference: 17 1/4 inches

37 weeks: gnaw, gnaw, gnaw...

Wednesday, March 7, 2012

Friday, March 2, 2012

So Proud

I don't often write about Evan. Being your typical "boring" kid with nothing "unusual" going on, he doesn't get a lot of the spotlight on here. So tonight, I wanted to celebrate a great accomplishment for him. He has literally stunned me in that he's 23 months old and virtually taught himself to sight-read over 30 words (to date).

I had purchased a Preschool Prep learning DVD set. It included videos for letters, numbers, colors and shapes, which I thought would be a fun way to enhance Evan's learning of these subjects. My older kids wanted to watch the sight words videos which were also included. Evan, of course, was hanging around during these viewings over the last few weeks.

Last week, it came to my attention that he is recognizing some of these words. (in addition to having already learned all the letters, numbers, colors and shapes) So I sat down with him and recorded going through the flashcards. At the time, he was reading over 17 of the words on the cards. I checked again today and he's up to over 30 of the 45 provided words. I'm amazed.

Sure, I know there are kids out there who can read many more and more complicated words at Evan's age (or maybe a bit younger), but I haven't worked with him at all on this. And 6 months ago, he needed Early Intervention therapy to get his language skills up to par; I never would have guessed he would have come so far so easily. I guess all he needed was a nudge in the right direction.

I am SO thrilled that this little smarty-pants is going to be Levi's primary peer role model as he grows. Between his winning personality and tenderness towards others (except the occasional transgression) and his exceptional use of his talent, this little guy is quite the package!