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| http://www.flickr.com/photos/potzuyoko/6549346059/ |
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...
Showing posts with label photos. Show all posts
Showing posts with label photos. Show all posts
Monday, October 15, 2012
Good Advice for Fellow Bloggers
This came across my news feed on Facebook and it seems like such smart advice, I just had to share...
Wednesday, May 9, 2012
Tuesday, April 17, 2012
A beautiful day in the neighborhood
On the way to this afternoon's bus, I really noticed the beauty of nature around me. Here's what I found in my half-block walk!
Saturday, April 7, 2012
Just for Fun
This is my favorite picture of the week, which I was able to get because the big kids were home from school thanks to Spring Break! I can't believe it's taken me this long to get a new picture of them all together.
And just for fun... here are some of the outtakes! It's hard to get four young people focusing on the same task for more than a second or two!! (especially if one of them is a chronic hair-puller!!)
And just for fun... here are some of the outtakes! It's hard to get four young people focusing on the same task for more than a second or two!! (especially if one of them is a chronic hair-puller!!)
Wednesday, April 4, 2012
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...
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!
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!
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.
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!
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!
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!
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.
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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.
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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!
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!
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| 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.
.jpg)
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.
.jpg)
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!
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Wednesday, March 7, 2012
Wednesday, February 22, 2012
Wednesday, February 1, 2012
Saturday, October 29, 2011
31 for 21: Day 29 ~ Silent Saturday
I skipped my normal Wordless Wednesday post this week and I just so happened to snap a FABULOUS photo today, so in honor of this great picture, my first Silent Saturday... Levi seems to be enthusiastic about the idea!
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| Happy after eating some Yummy Pears! |
Thursday, October 27, 2011
31 for 21: Day 27 ~ Is the Doctor In?
Having a child with special needs often means lots of extra face time with doctors. In particular, having T21 lends itself to seeing both the pediatrician and specialists frequently, at least in the first couple of years of life.
Today, thankfully, was just a well-child visit to the pediatrician's office for Levi. He had his four-month checkup and it went very well. I informed his pediatrician that we've started working with solid foods and that we're switching Levi's supplementation from Poly-Vi-Sol/Zinc/B12 to the Nutrivene D product. She was fine with that. Levi hasn't indicated any problems as a result of starting off with sweet potatoes instead of rice cereal and so it seems we're on the right track there as well.
People with T21 often have additional challenges with eating and speaking because they frequently have high palates in their mouths, smaller mouths and/or larger tongues. I inquired with the doctor about Levi's mouth and she confirmed my thoughts that he doesn't seem to present with any of these issues. I think that's great news because it may mean that eating food may be less challenging and that the actual articulation of speech may be a little easier for him than we had initially thought. In the end, only time will tell, but it was good news nonetheless.
I did express some concern about Levi's substantial weight gain vs. his minimal growth lengthwise. I know that kids with T21 can be predisposed to hypothyroidism as they grow because their thyroid often can't keep up with their growth. We also have a family history of thyroid disease and so it's even more important to me that we stay ahead of any problem that might develop. Talking to his pediatrician, we agreed that although not absolutely necessary, it would not be a problem to check Levi's thyroid levels now rather than waiting for his 6 month appointment. Typically, they will only check two hormone levels in a test for hypothyroidism - the TSH (thyroid stimulating hormone) and T4 levels. If both numbers are normal, then it is presumed that no thyroid disease is present. However, there is another test which indicates if thyroid antibodies are present. If so, then even though his hormone levels are currently normal, antibodies would indicate that he is in the process of developing hypothyroidism and so we'd want to check his levels more frequently. Thankfully, if Levi does develop thyroid disease, the fix is pretty easy. A simple pill, which can be crushed, is all he'll need to compensate.
The blood draw was not fun to watch (or participate in, I'm sure), but Levi survived and thankfully it was over in less than 2 minutes. Unfortunately, I think it's only going to get worse as he gets older (and stronger), until he's old enough to understand that remaining calm and sitting still is going to help him.
We're also vaccinating on a delayed schedule, so Levi only got half his vaccines this month and will get the rest next month. And no flu shot yet - that will be at his 6 month checkup.
Everything else was great! His stats were as follows:
Weight: 15 lbs, 14 ounces (67th percentile)
Length: 24.5 inches (33rd percentile)
Head Circumference: 16 inches (13th percentile)
These percentiles are all pretty consistent with his last visit, except the length - I think he may have been "overmeasured" last time in the length. The medical assistants aren't always the most precise when it comes to wriggly little babies!
Aside from the vaccines he'll be getting next month, we have followups with specialists to look forward to. We should be seeing the opthomologist in December and the cardiologist sometime in March. Hopefully nothing else develops in the meantime.
And since tonight is Trick Or Treat night here in our township, here's a picture of Levi modeling his costume. Unfortunately, temps have plummeted and it's rainy so the little boys may not be trick or treating with the big kids, but at least his costume gets to double as a sleeper until he grows out of it!
Today, thankfully, was just a well-child visit to the pediatrician's office for Levi. He had his four-month checkup and it went very well. I informed his pediatrician that we've started working with solid foods and that we're switching Levi's supplementation from Poly-Vi-Sol/Zinc/B12 to the Nutrivene D product. She was fine with that. Levi hasn't indicated any problems as a result of starting off with sweet potatoes instead of rice cereal and so it seems we're on the right track there as well.
People with T21 often have additional challenges with eating and speaking because they frequently have high palates in their mouths, smaller mouths and/or larger tongues. I inquired with the doctor about Levi's mouth and she confirmed my thoughts that he doesn't seem to present with any of these issues. I think that's great news because it may mean that eating food may be less challenging and that the actual articulation of speech may be a little easier for him than we had initially thought. In the end, only time will tell, but it was good news nonetheless.
I did express some concern about Levi's substantial weight gain vs. his minimal growth lengthwise. I know that kids with T21 can be predisposed to hypothyroidism as they grow because their thyroid often can't keep up with their growth. We also have a family history of thyroid disease and so it's even more important to me that we stay ahead of any problem that might develop. Talking to his pediatrician, we agreed that although not absolutely necessary, it would not be a problem to check Levi's thyroid levels now rather than waiting for his 6 month appointment. Typically, they will only check two hormone levels in a test for hypothyroidism - the TSH (thyroid stimulating hormone) and T4 levels. If both numbers are normal, then it is presumed that no thyroid disease is present. However, there is another test which indicates if thyroid antibodies are present. If so, then even though his hormone levels are currently normal, antibodies would indicate that he is in the process of developing hypothyroidism and so we'd want to check his levels more frequently. Thankfully, if Levi does develop thyroid disease, the fix is pretty easy. A simple pill, which can be crushed, is all he'll need to compensate.
The blood draw was not fun to watch (or participate in, I'm sure), but Levi survived and thankfully it was over in less than 2 minutes. Unfortunately, I think it's only going to get worse as he gets older (and stronger), until he's old enough to understand that remaining calm and sitting still is going to help him.
We're also vaccinating on a delayed schedule, so Levi only got half his vaccines this month and will get the rest next month. And no flu shot yet - that will be at his 6 month checkup.
Everything else was great! His stats were as follows:
Weight: 15 lbs, 14 ounces (67th percentile)
Length: 24.5 inches (33rd percentile)
Head Circumference: 16 inches (13th percentile)
These percentiles are all pretty consistent with his last visit, except the length - I think he may have been "overmeasured" last time in the length. The medical assistants aren't always the most precise when it comes to wriggly little babies!
Aside from the vaccines he'll be getting next month, we have followups with specialists to look forward to. We should be seeing the opthomologist in December and the cardiologist sometime in March. Hopefully nothing else develops in the meantime.
And since tonight is Trick Or Treat night here in our township, here's a picture of Levi modeling his costume. Unfortunately, temps have plummeted and it's rainy so the little boys may not be trick or treating with the big kids, but at least his costume gets to double as a sleeper until he grows out of it!
Monday, October 24, 2011
31 for 21: Day 24 ~ Another Month Older
Today Levi is 4 months old! I guess not many people typically look at 4 months as being a "major" milestone, but I get excited every time he gets another month older. We went and had portraits taken, as we do every two months in our household. That may seem a bit much, but hey - it's only for the first year. Babies really do change so much in those first 12 months, it seems a shame to miss capturing those changes.
I would like to use today's post to write a letter to my little Levi and of course, the usual will be posted at the end too.
--------------------------------------------
Dear Levi -
Please go back to being a good sleeper. Love, Mom. (Just kidding)...well, sort of
Okay, but really, you need to start taking longer naps and limiting your overnight wake-up calls to once or twice. And that whole thing where you go right back to sleep after eating in the middle of the night ~ do that again too, please!
Mommy has officially joined the ranks of the "living-dead." My sleep-deprived brain is now zombie-fied 90% of the time. Sure it's seems I may to be somewhat to blame as I don't get myself to bed until around 11:00 pm or midnight most evenings, but it's for a good reason. I need to pretend that I don't live in a world only filled with children. I need to "talk" to the other hostages (um, parents) who find the internet is the only way to reach out and touch somebody 5 days out of 7! And then there's housework and chores to be done too. Don't get me started on that!
Anyway, you're four months old now and so if you've read the handbook (you received that on day one, I believe), you'll know that you're now to get your act together and start taking a loooong morning nap. Two hours will be sufficient. Oh - and your sister wants to start sharing a room with you soon, but you can't be waking her up four times a night because your little tummy thinks it needs a top-off. She has to be awake for school during the day, you know. Daddy will be thrilled to be the only person snoring in the bed anymore, but I will miss you (a little bit) even if you were a bed-hog.
Well, now that we've gotten that bit out of the way, let me say "Thank You" for all the little things you do for me each day that make me feel so glad to be your mommy. Your incessant chatter, your smiles and laughter and the way your eyes crinkle up all little when you smile makes me feel all warm and fuzzy inside.
Thank you for loving me endlessly even on the days when your tired mama is all cranky and doesn't want to do much. You may or may not accomplish your motor skills and milestones as per the handbook (you know, the one I mentioned earlier), but you're showing me that this is no race to the finish. This is one of those journeys where it's essential to take the scenic route and enjoy the company of the one you're with.
Thank you, my love, for being you. All your sweetness and perfection becomes more evident every day.
All my love, Your Mommy
-----------------------------------
Stats!
Weight: 16 pounds, 3 ounces (75th percentile)
Length: 24.75 inches (50th percentile)
Head Circumference: 16.25 inches (25th percentile)
I would like to use today's post to write a letter to my little Levi and of course, the usual will be posted at the end too.
--------------------------------------------
Dear Levi -
Please go back to being a good sleeper. Love, Mom. (Just kidding)...well, sort of
Okay, but really, you need to start taking longer naps and limiting your overnight wake-up calls to once or twice. And that whole thing where you go right back to sleep after eating in the middle of the night ~ do that again too, please!
Mommy has officially joined the ranks of the "living-dead." My sleep-deprived brain is now zombie-fied 90% of the time. Sure it's seems I may to be somewhat to blame as I don't get myself to bed until around 11:00 pm or midnight most evenings, but it's for a good reason. I need to pretend that I don't live in a world only filled with children. I need to "talk" to the other hostages (um, parents) who find the internet is the only way to reach out and touch somebody 5 days out of 7! And then there's housework and chores to be done too. Don't get me started on that!
Anyway, you're four months old now and so if you've read the handbook (you received that on day one, I believe), you'll know that you're now to get your act together and start taking a loooong morning nap. Two hours will be sufficient. Oh - and your sister wants to start sharing a room with you soon, but you can't be waking her up four times a night because your little tummy thinks it needs a top-off. She has to be awake for school during the day, you know. Daddy will be thrilled to be the only person snoring in the bed anymore, but I will miss you (a little bit) even if you were a bed-hog.
Well, now that we've gotten that bit out of the way, let me say "Thank You" for all the little things you do for me each day that make me feel so glad to be your mommy. Your incessant chatter, your smiles and laughter and the way your eyes crinkle up all little when you smile makes me feel all warm and fuzzy inside.
Thank you for loving me endlessly even on the days when your tired mama is all cranky and doesn't want to do much. You may or may not accomplish your motor skills and milestones as per the handbook (you know, the one I mentioned earlier), but you're showing me that this is no race to the finish. This is one of those journeys where it's essential to take the scenic route and enjoy the company of the one you're with.
Thank you, my love, for being you. All your sweetness and perfection becomes more evident every day.
All my love, Your Mommy
-----------------------------------
Stats!
Weight: 16 pounds, 3 ounces (75th percentile)
Length: 24.75 inches (50th percentile)
Head Circumference: 16.25 inches (25th percentile)
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| Make a picture slideshow |
Saturday, October 22, 2011
31 for 21: Day 22 ~ A Brief Interaction
Today my husband and I left Levi to have a leisurely evening at home with a friend and we took the rest of the kids to a Halloween event at a local amusement park for some fun. After a little costumed trick or treating, we got to enjoy a few rides and some games too.
While I was off observing Evan's skills on the mini bulldozers, my husband had his first interaction with another parent of a child with T21. He recounted the story to me afterwards and made me proud.
As he was standing in line with our oldest two children, the ride attendant asked if he minded allowing a mother and her child to cut in front of him. My husband noticed immediately that the child had T21 and so he said, "Yes, of course." As the woman was waiting for the ride to begin, my husband said, "If you don't mind sharing, how old is your daughter?" He was curious and estimated her age to be about 4 years. The mother replied that her daughter was 8 years old. My husband was a little surprised, but managed to explain that our youngest child has T21 also and is just about 4 months old. After the ride ended, the woman told my husband that sometimes it's difficult, for the child with T21 but also sometimes for the siblings. And then she wished us luck.
After he finished telling me this story, I have to admit that I was somewhat suprised by the woman's attitude towards her experiences with T21. In the online community with which I participate frequently, the parents on the Down syndrome board are pretty positive about the condition, generally speaking. Somehow, I think I expected someone in "real life" to have the same sort of perspective when interacting with another parent of a child with T21. In fact, I'm a bit disappointed that she didn't.
Of course, I don't know anything about the woman. Heck, I didn't even meet her - my husband did. But I guess I'd hoped that she'd have something positive to counter the expression of negative experience. It's one of those kinds of letdowns that makes me wonder if perhaps there's a bit of disillusionment going on in my own life. Perhaps.
I know that we're sometimes told to expect it, but I can't presume to know that our life with Levi will be any more challenging that our life with Trevor or Katelyn or Evan for that matter. Perhaps it will be, but then again, life often has a way of presenting us with something unexpected. I told my husband that I truly believe that until he shows us otherwise, we need to behave as though Levi has no limits, just like we would for our other children. I think that having high expectations but being open to when those goals are met will be the best thing for him. I also gave Hubby props for remembering to use the term, "T21" instead of Down syndrome. Yay, Hubby!!
We don't often have interactions with other parents of children with T21 as we're generally not really good with introducing ourselves to complete strangers. But I think we're slowly changing those habits and I'm going to look forward to our next meeting ~ and have expectations for good things!
And since a post usually isn't complete without a visual aide, here's a picture of my toddler on the "scary-go-round" for the first time. It's a little blurry (as are most pics of him since he's always moving), but I think his feelings about the ride are very clear!
While I was off observing Evan's skills on the mini bulldozers, my husband had his first interaction with another parent of a child with T21. He recounted the story to me afterwards and made me proud.
As he was standing in line with our oldest two children, the ride attendant asked if he minded allowing a mother and her child to cut in front of him. My husband noticed immediately that the child had T21 and so he said, "Yes, of course." As the woman was waiting for the ride to begin, my husband said, "If you don't mind sharing, how old is your daughter?" He was curious and estimated her age to be about 4 years. The mother replied that her daughter was 8 years old. My husband was a little surprised, but managed to explain that our youngest child has T21 also and is just about 4 months old. After the ride ended, the woman told my husband that sometimes it's difficult, for the child with T21 but also sometimes for the siblings. And then she wished us luck.
After he finished telling me this story, I have to admit that I was somewhat suprised by the woman's attitude towards her experiences with T21. In the online community with which I participate frequently, the parents on the Down syndrome board are pretty positive about the condition, generally speaking. Somehow, I think I expected someone in "real life" to have the same sort of perspective when interacting with another parent of a child with T21. In fact, I'm a bit disappointed that she didn't.
Of course, I don't know anything about the woman. Heck, I didn't even meet her - my husband did. But I guess I'd hoped that she'd have something positive to counter the expression of negative experience. It's one of those kinds of letdowns that makes me wonder if perhaps there's a bit of disillusionment going on in my own life. Perhaps.
I know that we're sometimes told to expect it, but I can't presume to know that our life with Levi will be any more challenging that our life with Trevor or Katelyn or Evan for that matter. Perhaps it will be, but then again, life often has a way of presenting us with something unexpected. I told my husband that I truly believe that until he shows us otherwise, we need to behave as though Levi has no limits, just like we would for our other children. I think that having high expectations but being open to when those goals are met will be the best thing for him. I also gave Hubby props for remembering to use the term, "T21" instead of Down syndrome. Yay, Hubby!!
We don't often have interactions with other parents of children with T21 as we're generally not really good with introducing ourselves to complete strangers. But I think we're slowly changing those habits and I'm going to look forward to our next meeting ~ and have expectations for good things!
And since a post usually isn't complete without a visual aide, here's a picture of my toddler on the "scary-go-round" for the first time. It's a little blurry (as are most pics of him since he's always moving), but I think his feelings about the ride are very clear!
Friday, October 21, 2011
31 for 21: Day 21 ~ Food is Good!
Levi is fast approaching 4 months of age. That is the age when I've always started introducing solid foods to my kids. The routine has pretty consistently been to start with rice cereal, then oatmeal, eventually moving on to veggies and then fruits.
This time I decided to take a different path. Instead, I decided to start with sweet potatoes. I've done enough reading to feel confident that there isn't any real danger in starting an infant on something that actually tastes like food!
Plus, the bonus is that if he consumes this eagerly, I should be able to start giving him his Nutrivene D supplement. It is an excellent multivitamin, but tastes rather bitter alone and doesn't dissolve well enough for a bottle.
There was a tiny bit of pushing the food out with his tongue, but he seemed mostly accepting of it and I'm hoping that maybe over the next week, he'll actually get excited about it.
Of course this means that all too soon, the results in the diaper won't be as simple to handle (we cloth diaper), but that means he'll just be joining in the same ranks as his brother. I'm happy to make this leap even if it means more work for me in the laundry department.
Plus, I'm starting with the jarred purees for ease of use, but soon I'll be back in the swing of making homemade baby food again. Those were fun days in the kitchen. And ~ it was great to know that what I was feeding my baby was as healthy as it gets with no preservatives or added colors or dilution with water that wasn't necessary.
AND because its Friday, Levi is another week older. He's 17 weeks and in 3 days, he'll be 4 months old. My mother always told me time goes faster the older you get and I totally agree! Here's his cutie pie picture from his "lunch" today...
I know he's up to 16 pounds, but I haven't had a chance to do his weekly measurements because it's been crazy-busy this week. I'm sure I'll try to get them posted for tomorrow...er, later today!
This time I decided to take a different path. Instead, I decided to start with sweet potatoes. I've done enough reading to feel confident that there isn't any real danger in starting an infant on something that actually tastes like food!
Plus, the bonus is that if he consumes this eagerly, I should be able to start giving him his Nutrivene D supplement. It is an excellent multivitamin, but tastes rather bitter alone and doesn't dissolve well enough for a bottle.
There was a tiny bit of pushing the food out with his tongue, but he seemed mostly accepting of it and I'm hoping that maybe over the next week, he'll actually get excited about it.
Of course this means that all too soon, the results in the diaper won't be as simple to handle (we cloth diaper), but that means he'll just be joining in the same ranks as his brother. I'm happy to make this leap even if it means more work for me in the laundry department.
Plus, I'm starting with the jarred purees for ease of use, but soon I'll be back in the swing of making homemade baby food again. Those were fun days in the kitchen. And ~ it was great to know that what I was feeding my baby was as healthy as it gets with no preservatives or added colors or dilution with water that wasn't necessary.
AND because its Friday, Levi is another week older. He's 17 weeks and in 3 days, he'll be 4 months old. My mother always told me time goes faster the older you get and I totally agree! Here's his cutie pie picture from his "lunch" today...
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| First Food: Sweet Potatoes |
And just showing off his belly button, while completely refusing to showcase his new skill, "sitting unsupported by anything except the couch"
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| 17 weeks! |
Thursday, October 20, 2011
31 for 21: Day 19 ~ Wordless Wednesday
Okay, technically, I'm a day late, but this is the post as it would have been last night if I hadn't been horribly exhausted!
Levi showing off his new skill! Sitting supported only by the couch!
Levi showing off his new skill! Sitting supported only by the couch!
Sunday, October 16, 2011
31 for 21: Day 16 ~ Hopes & Fears
As a parent of a child with a lifeling disability, there are many things which can be feared. Some of the more imminent issues, like hypothyroidism or eye problems or cognitive impairment or physical delays can be consuming in the early years, but they don't come close to touching the thing I fear the most. My biggest worry is the possibility of losing my child. According to current data, people with T21 have significantly higher rates of early-onset dementia (like Alzheimer's) and an average lifespan of about 60 years.
I suppose that the possibility of losing a child, in mind or body, exists for every parent, but I doubt it's such a looming issue for the "general" population. Most parents are fortunate to be able to shrug off such concerns and figure that they're unlikely to be unlucky enough to experience this particular heartache.
In my case, I'm horrified by the thought of my baby developing dementia in his 40's. Unfortunately, 25% or more of people over age 35 (with T21) will show signs of Alzheimer's-type dementia. That's one in four! That hits far too close to home for me.
Currently, there are some research initiatives looking into medications which may help protect the brain from being affected as easily by this devestating disease, but there is not yet anything approved by the FDA. Some parents of children with T21 are using TNI (Targeted Nutritional Intervention) to try to improve the current and future condition of the brain and protect it against decline as the child becomes an adult. There is a lot of information out there, but none of it is a guarantee. Some studies show benefits; some studies show none. The general consensus seems to be that it's a personal decision whether supplements and vitamins are worth spending money on ~ some can be very pricey.
In the end, I've decided to invest my time, energy and some money into trying TNI for Levi's benefit. Even if I don't see a lot of short-term gain in his development as a child, I may be helping to offset the problems that can occur as an adult. I want my baby to be with us (in mind and body) for as long as possible and I'll do whatever is within my power to make it so.
My hope is that before Levi reaches adolescence, there will be some effective options as far as medications and alternative medicines available to help protect the cognition of people with T21. As recently as 30 years ago, it was recommended to parents (in this country) that children with T21 should be institutionalized as they would never accomplish anything or be anything except a burden to the family and society. Parents proved the medical community wrong and once they got on board, great strides have been made in the medical community. With a little luck and a lot of hard work, Levi's generation and those after him may have the benefit of modern medicine that was not available to his predecessors. This hope allays my fears and allows me to focus on Levi and our family now and not spend so much time focused on the what-if's of the future.
Thanks for reading and now for the cute pic of the day (okay two ~ because I couldn't choose)
I suppose that the possibility of losing a child, in mind or body, exists for every parent, but I doubt it's such a looming issue for the "general" population. Most parents are fortunate to be able to shrug off such concerns and figure that they're unlikely to be unlucky enough to experience this particular heartache.
In my case, I'm horrified by the thought of my baby developing dementia in his 40's. Unfortunately, 25% or more of people over age 35 (with T21) will show signs of Alzheimer's-type dementia. That's one in four! That hits far too close to home for me.
Currently, there are some research initiatives looking into medications which may help protect the brain from being affected as easily by this devestating disease, but there is not yet anything approved by the FDA. Some parents of children with T21 are using TNI (Targeted Nutritional Intervention) to try to improve the current and future condition of the brain and protect it against decline as the child becomes an adult. There is a lot of information out there, but none of it is a guarantee. Some studies show benefits; some studies show none. The general consensus seems to be that it's a personal decision whether supplements and vitamins are worth spending money on ~ some can be very pricey.
In the end, I've decided to invest my time, energy and some money into trying TNI for Levi's benefit. Even if I don't see a lot of short-term gain in his development as a child, I may be helping to offset the problems that can occur as an adult. I want my baby to be with us (in mind and body) for as long as possible and I'll do whatever is within my power to make it so.
My hope is that before Levi reaches adolescence, there will be some effective options as far as medications and alternative medicines available to help protect the cognition of people with T21. As recently as 30 years ago, it was recommended to parents (in this country) that children with T21 should be institutionalized as they would never accomplish anything or be anything except a burden to the family and society. Parents proved the medical community wrong and once they got on board, great strides have been made in the medical community. With a little luck and a lot of hard work, Levi's generation and those after him may have the benefit of modern medicine that was not available to his predecessors. This hope allays my fears and allows me to focus on Levi and our family now and not spend so much time focused on the what-if's of the future.
Thanks for reading and now for the cute pic of the day (okay two ~ because I couldn't choose)
Saturday, October 15, 2011
31 for 21: Day 15 ~ Other Stuff Too
Today was one of those days when I had very little time to think about T21. Like none, zero, zilch. I liked today. Although I try to remain positive about how T21 will impact our lives, sometimes it's easier to pretend like it doesn't exist. I can do that because I have 3 other children and a husband and house which need my attention too.
I spent time with Levi today, but I had so much else going on, like sleepovers and birthday parties and digging holes in the yard. And laundry and dishes and carpet shampooing. And soccer games and shopping and the hunting-gathering of food. And somewhere in there, I may have sat down to relax for a minute... or not. I really can't remember. Yes, it's been one of those kinds of days. You know what? As tired as I am, it was nice to spend time with ALL the kids throughout the course of the day and not once think about T21. I'll think about it tomorrow when I'm lazing in bed with Levi while hubby is up with the others. Well, probably that won't happen (the lazing, not the thinking), but it was a nice thought.
My point in writing this post is to share that despite the enormity of the effect of T21 on our lives, we still have other stuff going on too and so all THAT stuff pertaining to T21 is just going to have to wait. We've got lives to live, work to do and fun to have.
No pics of Levi today...far too busy. But don't you worry, I'm sure there will be more tomorrow. Here's a cute one of my cat instead. She thinks she's child number 5...
I spent time with Levi today, but I had so much else going on, like sleepovers and birthday parties and digging holes in the yard. And laundry and dishes and carpet shampooing. And soccer games and shopping and the hunting-gathering of food. And somewhere in there, I may have sat down to relax for a minute... or not. I really can't remember. Yes, it's been one of those kinds of days. You know what? As tired as I am, it was nice to spend time with ALL the kids throughout the course of the day and not once think about T21. I'll think about it tomorrow when I'm lazing in bed with Levi while hubby is up with the others. Well, probably that won't happen (the lazing, not the thinking), but it was a nice thought.
My point in writing this post is to share that despite the enormity of the effect of T21 on our lives, we still have other stuff going on too and so all THAT stuff pertaining to T21 is just going to have to wait. We've got lives to live, work to do and fun to have.
No pics of Levi today...far too busy. But don't you worry, I'm sure there will be more tomorrow. Here's a cute one of my cat instead. She thinks she's child number 5...
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