A chronicle of my life events, including raising children with Asperger's syndrome, with Down syndrome and with love.
Life, love and laughter, with a few unexpected moments thrown in for good measure...
Okay, so maybe in my own mind, the countdown has been going on for a while. 5 weeks! That's all that stands between Levi and his first birthday. I'm officially in the midst of party planning and I will admit that thus far, it's felt the most exhausting. I think it's because I'm trying to go big - this is our last first birthday, after all - AND stay within a reasonable budget. All of this while trying to still keep it all fun and exciting. It's hard. Sometimes too hard for a woman who wants nothing more than to fold some laundry and take a nap (most days). But it will be sooo worth it once party day is here!
First cake - for Nana's birthday!
I think that Levi's birthday will be bittersweet - I read so many stories of parents who have kids with Down syndrome. Many have confessed that birthdays, especially the first one, can be difficult. It truly is a celebration of life and all that the little one has worked so hard to accomplish, but it can often be a painful reminder of how the gap between their child and "typical" peers is widening. Will knowing that this issue will likely be dredged up from the bottom of my heart help to keep me from feeling that sadness? Only time will tell... For now, I'm going to focus on the details of the party and keep enjoying what's left of the rest of Levi's first year. It will be over before I know it!
Practicing fine motor skills
So at 47 weeks of age, I discovered a major error on my part. This knowledge came about accidentally as I found a better way to measure Levi's length. He's so wiggly, it's hard to know whether I'm getting an accurate measurement. So along with this "new and improved" method, I found that Levi's actually a full half-inch shorter than what I'd thought! Ack!! For whatever reason, his growth (length-wise) has always been one of the things I like to keep a close eye on.
This new information drops his height down to about the 15th percentile on the typical growth charts. I'm so happy we have an appointment with the endocrinologist next week. I'd really like confirmation from an expert that I'm not doing anything (or NOT not doing anything) which might be affecting his growth negatively.
Working puzzles with Evan
This week, Levi has shown serious improvement in taking a bottle. He's averaging almost 15 ounces per day, which is great. The recommendation for a child his age is typically a minimum of about 16 ounces per day, so he's really close. The problem is that pumping breastmilk is not going so well. I can't keep up with that demand so I've needed to mix in formula. I don't mind that so much as long as he's getting at least 6 ounces or so of breastmilk per day along with the formula. I'm just doubting whether we'll be able to make it to his birthday. Ideally, I'd love to keep a few ounces of breastmilk in his diet for another couple of months, but I donated almost my entire "stash" from the freezer a few months ago because it seemed he was never going to take a bottle and I didn't want it all just to go to waste. Live and learn, I suppose...
Enjoying a bedtime bottle
Levi has started to develop another skill, which I believe is part of his overall plan to avoid four-point crawling! He's started pushing to his feet from a sitting position. With practice, he'll learn to pull to a stand from one knee/one foot. It's a rudimentary skill right now, but I look forward to seeing how he's doing near his birthday!
Yelling is still Levi's favorite form of communication, though I am hearing more and more of the complex babbling sounds. I definitely need new ideas on how to motivate him to talk more. When he wants attention, or is bored or is just trying to be silly, he gives a loud, throaty "aaaaaaah!!" I'd actually do the sound for you, but it kills my throat - I don't know how he does it all day!
Here's a sneak peek at the inspiration point for Levi's birthday. I'm so excited!!
Stats for the week:
Height: 28 inches
Weight: 21 lbs
Head Circumference: 17.5 inches
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!
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!
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
My little pumpkin is a whole eight months old!! And what a month it's been... It seems like every other day, Levi was making some new achievement, reaching some new milestone.
He can sit up independently now! He falls over some, but he can totally sit up by himself without any support for several minutes at a time as long as he doesn't get too enthusiastic about waving his arms all around while he's playing. At the suggestion of his PT, I've been stretching his hamstrings frequently so he's more comfortable with the long-sit and less likely to flex his legs into a ring-sit. That definitely helped his balance.
He's also been practicing his 90/90 sit on the stool. It helps to have a little support behind him, but his endurance and balance is better every day! Today he managed to stay on for about 3 minutes without any issues.
Watch out, World! He's beginning to army crawl! He started off on the inclined crawling track, but just 2 nights ago, he found motivation in a badmiton birdie which was rolling around on the floor and he pursued it to the best of his ability. He managed to move himself forward about 4-5 feet in the span of a minute or two. Not too shabby! Once he perfects his technique, I imagine there will be no stopping him as this kid LOVES to move!
Working on his modeling career instead of using the crawling track for it's intended purpose...
His vocalization is still increasing and I'm starting to hear an occasional "gee" or "ya" sound in there. That's awesome. Perhaps the "ma", "da", "ba" sounds are not too far behind. One can hope! Also, when I'm feeding him lunch, I'm frequently signing "eat" and "more" and when I do, he seems to understand some part of what I mean as he'll yank his fingers out of his mouth (he's always sucking on his fingers in between bites) and open up for the next bite.
Did someone mentioned something about a "ham?"
His bottom front teeth are still teasing us. I can see them - they're there... but they're still somehow under the gums. I don't know if the gums have swelled up around the top edges or what, but holy crow, they're slow....Despite a lack of teeth, he's been doing really well with eating. He has been eating the dissolvable baby puffs and does a fine job of gumming them to bits. He's moving his tongue laterally really well also and so I think that he'll soon be ready to move on to soft cubes of food. He loves to grab the puffs and try to get them into his mouth - though they often end up stuck to his face instead! Oh yeah - when I'm feeding him, if he's really into it, he'll grab the spoon and help guide it into his mouth. And then of course, he expects that I locate another spoon to continue the meal as he's loathe to give up his stolen one! Then I'm fighting both the fingers and the spoon as I try to get more food into his mouth.
His sleeping has improved a little, at least in the of where he's sleeping... The swing gets used infrequently and I don't have to hold him until he's soundly asleep before I can lay him down. He falls asleep on his own without much fuss most of the time. I can see the difference in the back of his head already - his hear was all worn out from rubbing his head back and forth in the swing when what he really wanted to do was roll around. His hair (in the back) is finally playing catch-up with the stuff on top and on the sides.
Enjoying the Jumper
He just had a sleep study done and the unfortunate side effect of testing is that you sometimes get bad news. In this case, I found out that Levi is having some episodes of apnea while he's sleeping. We won't have the detailed report of the study for another week or two, so until then, I don't know what the source of the problem is. On one hand, it would be nice if it was an obstructive apnea issue because the treatment plan is fairly easy: remove whatever is blocking the airway (if it's bad enough). The downside is obviously the surgery. Trevor had his adenoids and tonsils removed before he was three, but his first surgery was after he was 18 months old. It's even more scary to me to think about sending an infant into surgery. On the other hand, if it's a central apnea, then the issue is more likely related to his GERD. The solution for that problem is less clear as it's more of a positioning kind of thing that usually requires trial and error. It might be an issue that has to be "waited out" if that's the case, which I don't like because now I'm worried about his safety while sleeping. The one thing I can say about it is that I'm glad I followed through with getting the study done sooner rather than later.
Despite being forced to stay up two hours past his bedtime and then having his head wrapped like a mummy, he slept great ~ until Mr. MeanJeans came and added a nasal cannula halfway through. Then it was all screaming and not-sleeping for far too long. Mommy managed to get about 5 hours of sleep altogether.
He's been doing PT for 6 months now and so he was due for his Early Intervention review to update his IFSP. He has an OT (occupational therapist), whom we were meeting once per month for feeding advice, but we're going to start seeing her biweekly to work on developmental play as well as any feeding concerns and improving oral motor skills. PT will also continue weekly.
His growth has slowed down considerably since hitting 6 months of age, but he is still growing, so I believe there's no cause for concern. I spoke with his doctor about my concern that his thyroid might be functionally low, despite normal lab results. She insists that there's no evidence of cause for concern at this time and that we'll recheck around 10 months rather than a year since I previously checked at 4 months. He seems to be growing more in spurts than just a constant kind of rate. In fact, he's tall enough now that he can play in his jumper without anything under his feet except the carpet. That's a great advancement as Evan often came by and stole the little foam mats we stored under there. It was a pain to keep track of them.
He got his second flu vaccine with no apparent reaction - yay! And so now he's all done with shots until his nine month appointment, I believe - double yay!!
That's it for now except for the standard measurements and of course, photos, photos, photos!!
Height: 27 1/2 inches - approximately 40th percentile
Weight: 19 pounds (this is down a few ounces from last weeks measurements - he must be burning LOTS of calories!!) - approximately 40th percentile
Head Circumference: 17.2 inches - approximately 20th percentile
On the Down syndrome chart (which most physicians don't use any longer unless the child is too small for the typical charts), Levi is at about 85th percentile for length and about 90th percentile for weight.
Evan
No it's not Halloween, but I did this same picture with Evan and I LOVED it!
Here I am again. Writing another HUGE update because I've been procrastinating. I have all these great thoughts to put to “paper” but time is of the essence and essentially, I have none... well, that's not completely true. I have some, but it almost never coincides with proper brain function. So in most cases, writing when I actually have the time is much, much harder than it should be!
So my main reason for returning today is because Levi has recently turned 7 months old. Unbelievable!! I can say with certainty that the last month has brought many changes – mostly for the positive.
Sitting up alone for the first time
He rolled over from his back to his tummy for the first time and the next day was enthusiastically log-rolling across his world! He just began eating solid foods at 6 months of age and he's progressed really well to thick purees already. In fact, because he has a hypoactive gag reflex and a weaker swallow (due to low tone), he seems to do better with the thicker foods vs. the thinner purees. This got me eager to start making my own baby food again. He's still getting a little rashy with the fruits (except avocado) but I think it's probably less than it was at the beginning. He's tried all the standard fruits and even mango and the avocado. We haven't tried green veggies yet – but they're next on the list! His favorite food seems to be carrots. He was quite happy to sit up straight and remove his fingers from his mouth and open wide for a bite!
Chewing on anything he can find - I'm sure teeth aren't too far off!
I've begun signing some basics with him: diaper, mama, dada, eat and more. Of course, I'm not expecting to see anything in return for a while, but I look forward to it anyway...He is starting to blow raspberries to get attention and when he no longer wants to eat/nurse and in response to us blowing them to him. His therapist mentioned that this is a precursor to babbling, so that’s exciting to hear.
Excited to play with mama
He's so into looking at everything going on around him. I'm gonna have a moment of brutal honesty here... I've come so far in becoming comfortable with his diagnosis and how others perceive him, but sometimes I get so frustrated with the darn low-tone issue! He is just so cuddly and loveable and when I look at him examining everything around him with intensity, I know his brains are working just as hard as anyone else's – and then that darn jaw just drops down and his mouth gapes. Suddenly I feel like I have to defend him to anyone who may see him slack-jawed and explain that it has zero relation to intelligence or ability and is singularly related to muscle tone. Sadly – it's likely an issue within my own mind. Or perhaps that's my naivety speaking. Either way, I need to work on that. His oral muscle tone will improve with time and as he begins chewing and becomes old enough to understand therapy instructions to work on it specifically.
Standing for minutes at a time with only the couch at his back!
On to his skills – and this boy has got skills! He can sit without support for a full minute, though he does need to be positioned and entertained. If he thinks too hard about what he's doing, he tends to tip over backwards. Oddly, he's no longer frightened by his sudden change in position, like he used to be – as long as there's a pillow back there to provide a soft landing!
Smiling for the camera so much more often
We're working on pushing up on to straight arms and though he dislikes it immensely, he can do it through a verse of Twinkle, Twinkle Little Star and The Itsy Bitsy Spider! The hard part is getting him to do it while kneeling too – that always results in immediate crying and looking around for someone to save him. He'll get there – I say this with all fingers and toes crossed. I hope it's sooner rather than later , but it will be in his own time, regardless.
Cuddles from his big sister
The biggest issue we've dealt with in the last month is Levi's nap problem. He's never been a long-napper, but in the last month, his naptimes consistently got shorter until many of them were only 35 minutes long. That is nowhere near long enough to do all the good stuff naps are supposed to do for little ones. I racked my brain searching for answers and suddenly it occurred to me that all the other kids had a transition period where they learned to fall asleep without “mamassistance” by crashing in the cradle swing. That is an item we've not had in our household for this child. As soon as I thought of it, I just had to have one. Hubby deterred me for all of 8 hours, but that was only because Levi was already in bed for the night. First thing the next morning, I headed to the store and found my coveted item! Levi took his first nap in the swing within an hour of arrival and [insert heavenly angel sounds here], he slept for almost an hour and a half!! Yes!! The trend has continued and in one week, he's formed pretty much the same schedule the other kids had at this age. He gets up between 6:00-7:00 am most days and takes an hour long nap around 9:00 and then a 90 minute nap around 12:30 and then a third, 45 minute nap at 4:00. Then it's off to bed for the evening by 7:00.His temperment is SO much better – he's not extremely cranky every afternoon and for that I'm extremely grateful! I'm hoping that in another 2 months, he'll be taking just two naps consistently for a total of about 3 hours. Sleep consolidation is pure bliss....
Only the second-ever picture of all the kids together!
We are pursuing a sleep study just to make sure that there are no medical issues that would be messing with the quality/quantity of his sleep, but I'm thrilled with the improvements that have already occurred.
Quality time with his brother, Evan
His stats for the month: This big boy is weighing in at 19 pounds (approx 55th percentile). He is 26 7/8 inches long (approx 40th percentile) and his head circumference is 17 inches (same as his brothers' at this age and approx 20th percentile).
I'm so very excited to see what the next month has in store for us. Levi continues to surprise us at every turn!
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