Lots of News

It's been a busy couple of weeks. There was so much to do in preparation for Christmas and now it's all over. Well sort of - half of us ended up with a nasty virus so we cancelled plans with all of our Christmas visitors, which means that we still have Christmas get-togethers and gift-unwrapping to partake in once everyone is feeling better.

Christmas Eve 2011

Levi turned 6 months old on Christmas eve and is now closer to age one than not! That's so weird to think about, but it's true! He's had so many changes and experiences in the last 2 weeks that I feel overwhelmed trying to write about them in a nice way. I'll do my best considering that I'm one of the ill today and I feel like the unwrapping, the cleaning and the living was just too exhausting today.

2 weeks ago, Levi participated in a swallow study to see if he was aspirating anything while eating. He was referred for this study because he sometimes would choke while taking a bottle or breastfeeding and would frequently become "junky" sounding in his throat after swallowing purees. The swallow study turned out just fine but with a recommendation from the speech pathologist to start OT or speech therapy to address the low muscle tone in the mouth. Otherwise, his structures are normal in his mouth and his swallow is safe.

I began trying purees again after we got the "all clear" and to my surprise, he didn't see to have the swallowing issues that were evident prior to the referral for the swallow study. But I'd made some changes per the recommendation of the OT who evaluated him. She suggested that I offer him a dry-spoon between bites to essentially give him two swallows per bite of food. She also suggested that I recline him more than what he was so he didn't have to work so hard on trunk control while eating. Those two changes seemed to have made the major difference for him.

So we started with bananas since he seemed to prefer foods with less flavor impact. He did fine with eating them, but became constipated quickly. Then I tried peaches to alleviate the constipation, but he didn't seem to enjoy eating them because the flavor was so strong. Also, with both of the fruits, he developed a rash again up around his temples while eating. I moved on to sweet potatoes and the rash didn't appear, but he again seemed to behave like the flavor might have been too strong. So finally I got some baby oatmeal cereal and some prune purees. Mixing the two together diminished the flavor of the fruit, and he really seemed to enjoy it! Plus, no rash... success!! Now I have to experiment with the other fruits mixed into the oatmeal to see how he responds. But I'm kind of waiting to see the effect that the current concoction has on his digestion. I need to know if it's slowing things down too much or if he'll be fine.

25 weeks old

He's been refusing to take a bottle for a while and so it's been a challenge to get his vitamins and supplements into him. Now that he's taking some solids, I can mix in about half his vitamin and all of his zinc supplement on a daily basis, so I'm glad we've made that progress.

We're back into cloth diapers again. We took a break from their bulkiness (compared to disposables) in an effort to reduce the challenge level of reaching several gross motor milestones. Now that Levi can roll pretty well, I think any extra bulk from the diaper won't hinder his progress. Of course, this is always up for further evaluation. I ended up replacing all of the inserts for the medium sized diapers as the originals are over a year old and just weren't absorbing as much as they should have. Thankfully, this was only a $25 expense. That left enough money in the budget to splurge on a new diaper - a one-size elite with minky inserts from Fuzzibunz. Love it!!

Levi has made a lot of progress in learning to fall asleep with less help.  His pediatrician recommended waiting until he is six months old before trying to enforce any kind of sleep schedule on him. Well, he's there and so I guess it's time to provide a little assistance. I'm not looking forward to this, but I'm hoping that over the next week, I can help him learn to fall back asleep when he wakes too early. Once this skill is learned, I'm hoping he can extend his morning nap to a full two hours and then work on his afternoon naps soon. As of right now, he's sleeping through the night consistently, going to bed around 6:30 or 7:00 pm and not waking up until maybe 6:00 am.

When he's on the floor, Levi is pivoting while on his tummy and moving all around by rolling side-to-back-to-side repeatedly! He can lie on his tummy and reach out with his hands to grab a toy and bring it to his mouth. His sitting is really good - with nearly a straight back. And if he's on a slightly soft surface, he can sit independently for just a few seconds. With his back to me or the couch, he can sit much longer with only the tiniest bit of support, like a tiny bit of his head touching. He can also stand in front of the sofa with only the sofa at his back for support. I believe his longest demonstration of this skill is about 8 seconds. Just gotta capture it on film!

His language hasn't developed much in the last month or two. It seems to me that he's still making mostly the same noises. I haven't given much thought as to whether that's good, bad or indifferent. I suppose I'll be inquiring about that at his six-month checkup next week. He does still smile a lot and although many of his laughs are silent, occasionally, we get a really good giggle out of him!

At this point in time, I would describe Levi as being serious, stubborn, observant, easy-going (when not being pushed to do thing he doesn't want to do!), funny and active. He's really starting to resemble Katelyn and Trevor in his appearance. If I had to make a prediction, I'd say he'll end up with hair somewhat close in color to Katelyn's. 

Chillin' in a Cloth Dipe

His first Christmas was eventful in the sense that we ended up cancelling all of our visitors because Katelyn and Evan (and possibly Levi) were in the throes of some awful stomach bug. Additionally, all 6 of us are in various stages of fighting off a cold virus. We did not want to give THAT gift to anyone else. As for the actual day at home with all of our gifts to open, it went rather smoothly. Trevor was up at 6:30 am and managed to wait patiently for about 90 minutes before pestering about getting down to business. That required going upstairs to awaken Katelyn and Evan, who came downstairs with some protest. Katelyn managed to lie on the couch while we got started. Eventually, she worked up the energy to open her presents and then went back to the floor for further rest. Not too long after, she was carried upstairs for a nap. She woke up about 3 hours later, feeling much improved, though still sickly. Evan lasted all morning but was definitely ready for a nap when the time came. That age is definitely an enjoyable one - he opened 2 or 3 presents and wanted to play with them and had no interest in opening the rest. So, he's the only one with several presents still in their paper, waiting to be opened!

Levi enjoyed rolling around in the fallout from the unwrapping and even got to watch as Mom and Dad helped him unwrap his gifts. He received a little less than his siblings (though Mom purchased many of Evan's gifts with Levi in mind as well) but I'm sure he wasn't bothered by it. He got some small wooden toys and a plush toy for tummy time fun. He also got some big-boy pacifiers in bigger size than the ones he had (plus they have surfaces for teething). He received a growth chart to hang in his room and a birth-cerficate pillow. All his siblings have one and so he was happy to be included in the club! He received a bunch of snazzy new babylegs (cause he's sooo stylish!) and a drum to bang on when he's sitting up.

Removing the illness factor, it was a very pleasant Christmas day and in a way, it was nice not having to worry about getting ready to host guests. I seriously hope tomorrow holds great improvement for all of us, healthwise. And Levi has an appointment for his six-month pictures tomorrow, so fingers-crossed he cooperates with that. With the other kids, I have professional pictures of them lying on their backs in just a diaper, playing with their toes. Levi can do this, but doesn't hold on as long, so it may be tricky catching this shot. I think I'll be thrilled if I can just get a picture with him smiling - that's the one thing he doesn't seem to want to do often in front of a camera.

His Stats:
Weight: 18 pounds, 8 ounces (approx 68th percentile)
Length: 26.25 inches (approx 43rd percentile)
Head Circumference: 16.75 inches (approx 18th percentile)

Here's our slideshow from Christmas Day... just plain ol' having fun. Enjoy!

Christmas Day Slideshow

Getting Mobile

Every week, I'm updating the kids' individual pages but I haven't had an actual new post for a while. Today, I had something worth sharing, for sure! Levi has been gaining some mobility with all of his new-found skills. Throwing his legs around ends up moving him while he's on his back. And when he's on his tummy, he's constantly pushing with his legs, so in an effort to assist him in learning to crawl, I built him a crawling track!

It was fairly simple to build and modeled after this one:

The concept is that the walls keep baby traveling in a straight(ish) line and doesn't spin in circles. It's comfortable to lie on and gives a slippery enough surface to make for comfortable movement, yet also gives traction for pushing with toes, pulling with arms.

Ours is 48 inches long and approximately 16 inches wide (where baby lies). It's upholstered with 2 inch foam and vinyl fabric. Hopefully it holds up until he's done with it and on to walking! Here's a video of Levi during his second experience with it. He gets a little extra help from his big brother at the end. One end is propped up on the Tumzee to provide just a little assistance from gravity as well.

I can't wait to see if this really helps him develop his crawling skills. I'd love to see him getting around by 9 or 10 months. That would be amazing!!

Bring on the Bird!!

It's official. School is out for the next week and my dear hubby is home for the punishment, er, pleasure of having 6 of us (plus 3 kitties) crammed into our home for the next 7 days. Oh, and if we're lucky, we'll have 5 extra friends joining us for the big T-Day!

Typically we travel to family on the official start of the winter holiday season, but this year, with a one-year-old who is determined to destroy whatever he can conquer or reach and a baby who likes to doze off every 2 hours, it seems safer to take on the task of making our own meal and staying safely within the confines of our childproofed home! This means careful planning to create a delicious and home-cooked meal on Thursday. In my husband's eyes, this means abandoning hopes of baking my own pumpkin pies *sniff* and skipping the green bean casserole. *gasp!* But there's a 16 lb Tom cooling his heels in the fridge and plenty of sweet potatoes to go around. I even heard a rumor that someone invited Mrs. Smith, who decided to send 2 pies and some whipped cream in lieu of her attendance. Hooray!

Next year we'll still have a one-year-old who will likely be a whirlwind of destruction and so we'll probably be at home again. I'll take advantage of that time to be certain to get all stressed out over how I'll manage to make everything from scratch. Until then, I'll just enjoy my semi-homemade Thanksgiving dinner in my own home with my loving family (and good friends - hopefully) and say, "Bring on that Bird..."

A Random Heartwarming Thought

I had about half an hour to spend with just Evan this evening as I was putting him to bed. After the obligatory diaper change and some silliness while reading the bedtime story, it suddenly hit me ~ life will be like this with Levi too. Someday he will be walking and laughing and rolling around on the floor. He'll even be talking as well as Evan (who understands everything you say but doesn't articulate as well as some other kids his age). That thought instantly brought a smile to my face. It was the difference between knowing this (because I've read it somewhere or have been told this by experts or other parents) and really truly feeling it in my heart. It was a good moment for me. I hope I'm able to hold on that in the coming months as we work on overcoming whatever challenges may lie in store for us.

Challenges

Every life has it's challenges; every day of my life has it's own. Some are big and some are small, but the common factor is that each requires extra effort to figure out a way through the problem. This week, my challenges were many, but most centered around time management (ugh!) and finding a way to get Levi's new supplement into his diet.

Nutrivene-D is an antioxidant supplement designed specifically for people with T21, but it's bitter and as a powder, needs to be mixed into some kind of food that can hide the taste. Unfortunately, that plan didn't work out for Levi as it seems his system isn't quite ready for solids yet. (see Levi's Happenings & Stats for more details) So I got some advice to try using an oral syringe to squirt it into the back of his mouth between the cheek and gum to bypass most of his tastebuds and !VOILA! it seems to be working; crisis averted!

Now to look at that time management issue...

31 for 21: Day 31 ~ This is it!

Wow! What an amazing ride this past month. I missed a few days here and there, but mostly I was able to share some information and my thoughts and feelings on living life with T21. Not every post was about T21, but that's because our lives are overflowing with stuff outside of that realm as well.

I hope that I've been able to inform and inspire and open the hearts of some people along the way. I realize that many of the people reading this blog are already loving someone with T21, but I know that occasionally, a newbie will find their way here and that's where big differences are just waiting to be made.

So readers, please, if you read something you like or you think is worth sharing, please do!

I've also read plenty of blogs and gotten to know my online friends in the T21 community a little better. Thank you for letting me in and giving me a peek of your life. We all have a lot to learn from one another. My readers can check out my favorites my taking a look at my sidebar. There are some real gems in there...


It's Halloween, and our babies are all in bed snoozing because in our area, most towns do their trick-or-treating the Thursday before Halloween. I think it's to prevent extra mischief or something along those lines. Anyhow, it means the actual holiday can be dedicated to grown-up time and watching some scary movies instead! BOO! Have a great night everyone - if you're out and about - be safe and have fun!!

To sign off, I'm adding the video virtually synonomous with Halloween as well as an awesome interpretation via decorations... Enjoy whichever you'd prefer (or both)!

31 for 21: Day 30 ~ Emotions

I think something that every parent understands is how often emotions come into play when you're raising a child. This is true for all parents, special needs or not. This is just another way in which kids with T21 (and their parents) are more alike than different. I decided to write about the emotions involved with parenting special needs children because today was one of those days which brought more of them to light than usual.

Specifically, today was a GREAT day! I took the big kids to a friend's birthday party where they both had a very fun time. Then we left the little boys with family and took the big kids roller skating for the first time. It was actually for an event related to the elementary school's PTO. The entire rink was filled with small, inexperienced skaters tumbling and bumbling about. Oh yeah - and their parents, many of whom (including myself and hubby) who appeared not to have been on rollerskates for close to 20 years!

When I stopped to think about it, I realized I must have been crazy to think that all of us would be skating successfully this day. Katelyn and Trevor have never been rollerskating, but overall it actually went rather well. Katelyn fell probably 20 times in less than two hours. I'm certain she'll be extremely sore tomorrow, but she loved the experience and was actually doing much better by the time we left. I took Trevor around the floor twice (almost supporting all of his weight). We took one bad fall together and by the time we got to the exit area, he plainly stated that he was done. He didn't want to practice anymore. That was about 10 minutes after we got our skates on.

When he plugged his ears with his fingers and asked if he could go home to play the Wii, it struck me... How in the world did I expect this child to participate in this activity when he's got so many neurologically-related balance issues? How did I not think about how the noise level would irritate his overly sensitive hearing? How did I forget that an activity which his sister would find challenging but rewarding would likely leave him frustrated and wanting to give up early? Then I felt like a bad mom for not remembering to think of Trevor's special needs in circumstances such as this.

But then, as he often does, Trevor surprised me and once we traded his skates back in for his shoes, he was able to focus on trying to have fun while we were waiting for Katelyn and hubby to return. There were no tantrums and no whining. (well, not while we were in the rink, anyway). He demonstrated a surprising level of patience and understanding about letting others have fun even if he'd prefer to do something different. We told him how proud we were that he'd at least tried skating and that we'd love to give him the chance to practice more in the future when he's ready to try again.

So to return to my original subject... I had a moment in that roller rink when I was flooded with emotion about failing to plan ahead for Trevor's special needs. Sometimes it's guilt over forgetting something I think I should have remembered. Sometimes it's being overwhelmed with pride for how well Trevor handles a situation just when I expect the worst. Sometimes it's grief and worry about what lies ahead for Levi as he grows. Sometimes it's joy in seeing a simple smile spread like a ray of sunshine across the face of one of my little loves.

When I hold my baby and wonder how tough the years ahead will be, I try to remember that as always there will be laughter and fun and adventures mixed in with the challenges. He will bring light to our days, just as our other children have done. He will be loved and will love us, which is what life is all about. Thinking about the challenges we may expect often brings me to tears. For me, it's very difficult having so much out of my control and knowing that I will not be able to shelter my children from all the bad things in the world.

When I become overwhelmed by these emotions, I try to remember to have hope that someday, our society will come to understand that kids with T21 and autism and so many other disabilities (or different abilities as some like to say)  are just like everyone else. They are varied and interesting and multi-faceted. They are not defined by their medical conditions, but by who they are in spirit and character. I want to share who they are with others so that they will see this and not fall into the trap of expecting only the stereotypes of people who share the same diagnosis. I don't know that we'll ever reach a point where society-at-large is accepting of those "imperfect" people. I think that more than ever, we are cultured to desire, expect and work towards having perfect children, which we can hold up as evidence that we ourselves are better than others think we are. As a population, we seem to want a cure for all things imperfect and have a more difficult time seeing equal value in those people we deem less-than-ideal. I want to believe that in the coming years, advocacy will spread and our values as a society will change. If I knew this to be true, I'd think my heart would be less heavy at times. For now, I will remember to have hope and to do my part to put that kind of change into motion.

No pics of Levi today, but here's Trevor enjoying his post-skating snack and enjoying himself despite the "failure" of Operation RollerSkating!

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!

Happy after eating some Yummy Pears!

31 for 21: Day 28 ~ Weekly Updates

It's Friday! This means lots of things, one of which is that Levi is now 18 weeks old. He's had a stellar week, impressing both his PT and his brother's SI therapist with how he's doing developmentally. He can sit up on the couch, without parental assistance for several minutes at a time without really fatiguing or slouching (unless he's antsy and doesn't really want to be sitting, in which case he'll try to scoot down to his back). See?

18 weeks old

He also is practicing rolling over. He did it for the first time weeks ago, but he wasn't a big fan of the experience. His startle reflex is still present so it's probably going to be a while before he does it purposely and willingly without a LOT of encouragement, but he's also making progress - when he's willing to cooperate, he does it more easily than before. Here he is trying to talk me out of this practice session with his cute faces!

Come on! What do you say to quitting this session and hitting the milk bar? Hmm?

 When we're doing tummy time, he's holding his head much higher (at a 90 degree angle, usually) and for much longer periods of time. Sometimes he goes as long as 2-3 minutes at a time. When I pull him up to a sitting position by his arms, he keeps his head in line with no problem.

We started solid foods this week. The first was sweet potato, which he seemed to like initially, but this morning, he wasn't in the mood. Since I know he's okay with it as far as not having any kind of reaction, I figure we're good to move on to the next food. I thought bananas might be a safe bet. It's sweet and isn't known for being a GI irritant. So we tried bananas this afternoon and I noticed he had sort of a slightly red rashy kind of look on several spots around his hairline. It was faint enough that I wasn't sure that it wasn't there before we started. He seemed to enjoy the bananas so we continued and he ate all that I had dished out - about a tablespoon or two! I didn't notice any other issues after eating the bananas, so we'll try them again tomorrow and see if there's any kind of side effect again. If so, then we'll stop, but hopefully it was just a coincidence.

No stats today as he had all his weighing and measuring earlier this week. I'm so proud of my little guy. He works so hard and is so lovable. I'm surely going to miss these days when he's too active for all the snuggling we get to do now.

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!

31 for 21: Day 26 ~ A Much Needed Break

I recently read an article online stating that a recent study has shown that mother's of children with special needs have stress-hormone levels similar to that of soldiers in combat. The study has also shown that on average, raising a child with special needs can shorten the life of a mother by 9-12 years. That's astonishing!

It seems obvious that parents need a break from being parents every now and then. I believe this is even more important when your parenting worries and duties are perhaps more strenuous than that of the general population. Personally, I make sure that I get out of the house without the kids (usually to run errands) at least once per week.

A single hour of not having to answer endless questions or keep up an unending stream of chatter (to foster speech development) can be pure bliss. Sometimes I daydream about driving somewhere sunny with my Kindle and reading for an hour and then taking a nap in the van! I love my kids; I love being their mom and I love being there for them. But, even my super-mom brain needs a break once in a while.

Sooo... in steps my fabulous husband. When my daughter inquired what I want for Christmas, I told her that I'd like a day off. Super-hubby overhears this and for our 7th wedding anniversary, tells me to book myself a spa day of pampering and he'll take off work to stay with the kids. Woo-hoo!! I got on that straight away and today was that fabulous day-of-days! I got all pampered and even almost fell asleep somewhere between the facial and the massage.

For me, a day like this one recharges those super-mom batteries and gets me set up to handle another few months of daily challenges and the like. It helps me to be a better mom and hopefully a better wife too.

So to all you moms out there (and dads too - dads often overlook themselves, but moms are notorious for putting themselves last) ~ take a break and take some time for yourself. It's one of the best things you can do for yourself and your family. This is true whether your children have special needs or just regular plain-jane needs!

31 for 21: Day 25 ~ Bringing People Together

I swear that October is THE busiest month of the year for my family. Now it's doubly so since I'm trying to blog every day for this challenge. That being said, please forgive me for my brevity this evening. Blogging is one of at least 15 different tasks for the night.

What I wanted to talk about in this brief moment is one benefit of having a child with T21. The day that I began to fall apart (realizing that my baby probably has T21), I felt horribly alone. Four months later, I know that there is a huge community of people living with T21 and with many, many people who love them. Children with T21 do many things well, even if on their own timeline. One of the things they seem to do from birth is bring people together.

The reality is that parenting is a very competitive world these days. There are all kinds of books and products designed to help us be "better" parents; there are all kinds of gadgets designed to make our kids "better" kids. We are judged by society (in particular, other parents) on how well we're doing in raising our children to reach their full potential. This is very evident, for example, on a common baby forum website where there are birth clubs. The clubs consist of a group of women (usually) whose children were all born or due in a particular month and year. I have four kids and so I've lurked in no less than four of these forums at any given time. And I keep seeing the same drama and pettiness and competitiveness over and over. Don't get me wrong ~ it's not all bad, but it gets old, really fast.

The board for Down syndrome is vastly different. The caring and empathy evidenced there by people living with these special children is apparent in every post. 99% of the time, they are helpful, tactful and caring. The other 1% is shameless bragging on their child's most recent accomplishments, which is also completely accepted and welcomed.

Since I've found this particular forum, I've found that my wandering online quest for knowledge about T21 has greatly decreased. I find comfort in the knowledge and experience of those living parenting journeys similar to my own and it has lowered my anxiety surrounding the mysteries of what lies in store for my family. Never in a million years would I have guessed that I would have gained such peace from perfect strangers!

So tonight, I just want to say "Thank You" to my virtual friends who are working together to support one another in loving our kids for all the chromosomes they've got, not just despite the extra one. That is all...

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)

Make a picture slideshow

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!

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...

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"

 

 

17 weeks!

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!

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!

31 for 21: Day 17 ~ Prenatal Diagnosis

Just recently, a new test has become available in the United States. It is a non-invasive blood test which can do more than just screen for a possible genetic anomaly. It can virtually diagnosis or exclude diagnosis of T21 with a very high rate of accuracy. AND it's available as early as 10 weeks into the pregnancy.

Prior to the release of this blood test, a blood screening test was available in the first trimester and IF the results came back abnormal, then further testing could be pursued via CVS (chorionic villi sampling) or amniocentesis. The problem is that both of these tests are invasive, posing a risk, albeit a small one, of causing miscarriage. Also, the tests could only be performed within certain time frames; once the window of opportunity was missed, it was closed forever.

In many cases, women who decide they would not terminate a pregnancy for a positive diagnosis of T21 don't pursue the more conclusive tests because there's no point in putting the fetus at risk when they wouldn't do anything differently even if a diagnosis is made. The problem is that some women are left to wonder and worry when their screenings come back positive for a possible problem and they don't get a definitive answer until the baby is born. Stress like that is not good for mom-to-be or the baby-to-be.

Now that this new test is available, some women may be able to avoid the pitfalls of current testing, without putting the fetus at risk. But there is a downside to all of this. Recent surveys have shown that there is a very high rate of life satisfaction among parents of, siblings of and individuals with T21. Many of these people received a diagnosis post-natal (after birth). If more of these families had known of the diagnosis prior to entering the second trimester of pregnancy, would they have opted to terminate the pregnancy out of fear? It's certainly a question worth entertaining. Current information reflects a termination rate of about 90% of pregnancies in which the fetus is diagnosed with T21. With this new testing available, is it possible that we'll see an increase in that rate? It's a scary thought to those who have children with T21.

Considering that T21 is the most common genetic disorder among living people, the interest in finding sound medical help for children with this disorder seems minimal compared to the research being pursued for other medical issues. What impact might this new test have on that research? What if the possibility exists (because of this test) that future generations of people with T21 might be virtually eliminated? What does that mean for those who are already here?

Pharmacological research is typically a for-profit venture. If there's no money to be had in finding a "cure" for certain symptoms or conditions, then the companies running the show have substantially less interest in funding research. If the population of individuals with T21 diminishes in the future, then what happens to interest in research to better the lives of those individuals who are around? It's scary to think about what might be...

Ask just about any pregnant woman what she hopes for her child and more than likely you'll hear, "as long as it's healthy..." The truth is that the majority of people plan for  an "ideal" child and have a vision of what that child's life might be like in an "ideal" future. Unfortunately life doesn't usually work that way. As a species, we have variations in our genetic makeup. Some variations are slight and allow an individual to conform to the cuturally accepted norms without issue. Other variations are condemned as undesirable and people seek to avoid them.

I can certainly understand this; I think in some ways, it's built into our DNA just as in other animals. If given the option, I never would have asked for my child to have T21 any more than someone might request to have a child who is missing limbs or has a cleft palate or develop autism. But, we are human and can think beyond the encoding in our DNA. These variations exist and the people with these conditions have value just as any other member of society. With the availability of newer and better testing to "improve" prenatal diagnosis, I believe it's more important than ever to understand and embrace the differences in us all and recognize that there is value in all life, not just that viewed as ideal form of it.

Now that my little guy is here with us and we're learning just who he is, underneath the changes made by that extra chromosome, we're seeing affirmation that he really isn't all that different from the rest of us. He's got 24 chromosomes from Mommy (probably) and 23 chromosomes from Daddy and he looks a heck of a lot like his sister and behaves a lot like his brothers. But he's also his own unique person and I can't wait to find out more about him. I'm going to help him in any way I can to reduce the effect that having T21 has on his body and mind, but at less than 4 months into this journey with Levi, I can honestly say that I wouldn't change who he is for the world.

Now, after my SUPER long essay (kudos to you if you stuck around to read the WHOLE thing)...I'd like to share the following information provided by  Brian Skotko, MD, MPP, clinical genetics fellow at Children's Hospital Boston

DATA FROM THE NEW STUDY by PALOMAKI ET AL.

- a "positive" test means that there is a 98.6% chance that the fetus really does have trisomy 21

- a "negative" test means that there is a 99.8% chance that the fetus really does not have trisomy 21

- 98.6% of fetuses with trisomy 21 will be correctly identified as having trisomy 21

- 99.8% of fetuses without trisomy 21 will be correctly identified as not having trisomy 21

- Approximately 0.8% of samples did not have a result one way or another (as they did not meet certain technical and quality standards)

- The company also did a statistical adjustment, that could change the percentages above to 99.5%, 99.9%, 99.1%, and 99.9% respectively.

- Approximately 2.5% of the samples were rejected at the beginning because of inadequate amount (meaning that the results could not be run)

DETAILS OF TEST

- available early as 10 weeks of gestation

- about 10 day turnaround

- $1500-2000 to insurers

- max person will have to pay is $235 out of pocket

- this is ONLY a test for trisomy 21 and not for other forms of Down syndrome (i.e., translocation Down syndrome or mosaic Down syndrome)

- Therefore, a "negative" result could still mean that a fetus has Down syndrome (just one of the other forms)

- A "negative" result could still mean that the fetus has trisomy 18, trisomy 13, or other genetic conditions picked up by CVS or amnio

ELIGIBLE PERSONS

- must live or travel to one of 20 select cities

- must be >35 yo OR

- must have abnormal ultrasound finding OR

- must have a family or personal history of DS or other aneuploidy OR

- must have a serum "positive" screen

PRESS COVERAGE SO FAR

http://www.nytimes.com/2011/10/18/business/sequenom-test-for-down-syndrome-raises-hopes-and-questions.html?partner=rss&emc=rss

http://sequenom.investorroom.com/index.php?s=43&item=310

http://www.bloomberg.com/news/2011-10-17/sequenom-to-sell-down-syndrome-test-2-years-after-pullback.html

RESPONSES TO SHARE WITH MEDIA AND OTHERS

If you are in contact with the media, please feel free to share with them the following press releases and position statements. If the media have any questions, please direct them to Julie Cevallos at the NDSS (jcevallos@ndss.org).

National study on life with Down syndrome (Skotko, Levine, Goldstein)

Press release: http://www.brianskotko.com/images/stories/Files/skotko%20ajmg%20press%20release.pdf

Blog response: http://childrenshospitalblog.org/let%E2%80%99s-get-real-about-down-syndrome/

Will babies with Down syndrome slowly start to disappear? (Skotko)

Press release: http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P560.html

Blog response: http://childrenshospitalblog.org/will-babies-with-down-syndrome-slowly-disappear/

Physicians sometimes deliver inaccurate, incomplete, and offensive information about Down syndrome

Press release: http://www.brianskotko.com/images/stories/Files/prenatalpressreleasehmschb.pdf

Position Statement from the National Down Syndrome Society on Criteria that will be used to Evaluate Companies

http://ndss.org/index.php?option=com_content&view=article&id=155%3Anews&catid=54%3Apublic-relations&Itemid=140&limitstart=2

If you made it this far, thank you for sticking around and I promise far less text tomorrow....(well, later today since it's officially after midnight here now...)

An Exciting New Adventure - Sort Of...

My oldest son, Trevor, has Asperger's syndrome. He's five years old and between his diagnosis and his age, he's a handful. Thankfully, thus far his academic career seems to be doing fine. (we're about 6 weeks into his first year of school) But life at home can be crazy difficult sometimes.

Several months ago, after Trevor was diagnosed with Asperger's for the second time in several months, it was suggested to us that a significant amount of anxiety was present and was interfering with his ability to communicate ideas and make decisions and just function in general. After conferring with his psychologist, we decided to pursue treatment with an SSRI, which is pretty much the only medication approved to treat anxiety in children.

Trevor started taking Prozac several months ago and within a week or two, we saw a profound difference in him. He was able to get through a meal without reaching peak levels of stress which reduced him to tears. He was able to get a handle on his emotions a little better and dealt with new situations a little more easily. By no means was this a quick fix. He still has quite a few issues, but like I said, the difference was great and so we decided to allow this course of treatment for now.

The problem is that taking an antidepressant is (in my mind) not an acceptable form of treatment for the next 20+ years. Trevor is going to need a different kind of solution ~ one that addresses the problem, not just the symptoms. Also, reducing his anxiety has not eliminated all of his other issues and so there are still many battles fought which shouldn't be as difficult as they are.

I started looking into alternative treatments and discovered Brain-Based Therapies for children, specifically, Hemespheric Integration Therapy. This is a neurologic type of therapy which is based on the idea of right hemisphere dysfunction. This means that the left hemisphere is more developed than the right hemisphere, due to abnormal development of the right hemisphere. The claimed end result of this type of therapy is elimination of or a great reduction in the symptoms related to the autism.

I found a local chiropractor (with a specialty in neurology and a very good reputation) who performs this brain-based therapy and we have a consult scheduled for this coming week. I am slightly skeptical, but very excited to hear what possibilities may lie ahead of us. I would love to be able to get Trevor off the medication and improve his day-to-day experiences. Instead of breaking down emotionally and being confused socially, perhaps he can just be the happy, sweet little boy that he is in those moment in between episodes.

Hopefully I'll be back to post at the end of the week with an update. Fingers crossed for good stuff!!

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)

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...

31 for 21: Day 14 ~ Holy Pudge, Batman!

Yet another week has gone by and this baby continues to grow. Somebody said something about kids with T21 being slow to grow. Apparently, this kid didn't get that memo yet. 16 weeks old and he's up to almost 16 lbs! Ay chihuahua!!

I attempted to start Levi on the Nutrivene D supplement (mentioned in last week's post) but the particles are too big to go through a standard bottle nipple, so I can't dilute it in an entire bottle of breastmilk. And apparently, despite lacking a real "smell", it is very bitter and so poor Levi makes the worst faces and does his best to avoid swallowing it if I only mix it with a little milk and try to administer it via oral syringe. Soo... I think we're looking at holding off on the Nutrivene until he's on some solids and I can mix it in something that will hide the taste. Until then, we'll continue with the supplements he's been getting for several weeks now: Zinc, B12, Choline and Poly-Vi-Sol.

I've noticed this week that he's spit up a few times, which is unusual for him. The Prilosec he takes for reflux pretty much eliminated that problem. I wonder if perhaps his dosage needs increased. Or maybe it's just an anomoly.

His naps are becoming more organized. I've always gone by the information in the book, "Healthy Sleep Habits, Happy Child," and so far I've got 3 good sleepers. Levi is working on becoming number 4. Typically around 4 months of age, the morning nap becomes more consistent. Until this past week, Levi never slept longer than an hour (except following vaccines). This week, he had several days where he took a full two-hour nap in the morning. His mid-day nap and late afternoon nap are still pretty short, about 45-60 minutes. He's also been taking a siesta during the dinner hour and then he'll be up for about an hour or two before hitting the sack for the night.

All of this sleeping, combined with all the weight he's put on has me a bit concerned about his thyroid. One of the main medical conditions which is co-morbid with T21 is hypothyroidism. Hypothyroidism is a disease process where the thyroid gland does not produce enough hormones. These hormones control SO many functions within the body, a major one of which is metabolism and brain function. With kids who have T21, the thyroid function can start off normal, but as they grow, it can fail to keep up. That being said, and seeing all the extra sleeping Levi's been doing as well as how much weight he's gaining, I'm beginning to worry about it. I think I'm extra worried because I, as well as my grandfather, have a history of thyroid disease, so I would say he's "extra" predisposed to it. As a result, I've decided to have his blood drawn for his 4 month checkup in a couple of weeks to find out if everything is still functioning well. It will hopefully put my mind at ease. I don't look forward to putting him through the blood draw, but unfortunately, it will become a standard part of his life. At least annually, he'll need to have it checked, just like I do.

The last two weeks, he's blown me away with all the progress he's made with head control and with vocalization. Today, I'm sharing his weekly pic, as well as a few extras. Enjoy!

Stats:
Weight: 15 lbs, 10 oz 
Length: 24.25 inches
Head Circumference: 16 inches

16 weeks old!

Hangin' with Mommy

Tummy Time


Having a Conversation...

Enjoying his new Jumper...

31 for 21: Day 13 ~ A Sad Goodbye

So far, 2011 has been a year that has left me stunned by the unexpected ways in which life can turn. I've had my own difficulties to cope with, but tonight has brought about a sadness which really cannot be understood except by those who've experienced it.

In less than a year's time, two friends have lost little ones, one a son and one a nephew. The death of an innocent child is just hard to accept on so many levels. No matter the cause, it seems unjustified and unfair.

Tonight, the best I'm able to muster is a poem I found which touched my heart...

The world may never notice if a snowdrop doesn't bloom,
Or even pause to wonder if the petals fall too soon.
But every life that ever form or even comes to be,
Touches the world in some small way for all eternity.

The little one we longed for was swiftly here and gone.
But the love that was then planted is a light that still shines on.
And though our arms are empty our hearts know what to do.
Every beating of our heart says that we love you.

31 for 21: Day 12 ~ Wordless Wednesday

Okay not quite wordless. (they never truly are). First, I have to admit my mistake. I went to bed last evening, blissfully unaware that I had *oops* forgotten to make a post on my blog. So technically, I guess I failed the challenge. The good news is that nobody who participates truly fails! I've still got 30 days of raising awareness, so ~ HOORAY!


You might be wondering how Wordless Wednesday contributes to awareness of the issues with Trisomy 21. From personal experience, I can say that many parents wonder (a.k.a. fear) (upon receiving the news of their child's diagnosis) whether their child will be considered cute like other children. Wordless Wednesday provides all the proof needed.

So, back to today's subject matter...and thus the end of my words. Enjoy!



Loving the up-close-and-personal perspectives. It really "up's" the cute factor...



31 for 21: Day 10 ~ Ds versus T21

What do many think of when they hear the words, "Down syndrome?" For quite a few, thoughts turn to the sterotypical characteristics listed on many websites:

* thick skin around the neck
* flattened nose
* upward-slanted eyes
* short stature
* mental deficiency
* poor speech

The list could go on, but I'll stop there. I think you get the idea.

Now, what do people think of when someone says, "Trisomy 21?" Most likely, thoughts turn to something rather unbiased. Something like, "Oh, that sounds like a medical condition." They may, in turn, have questions about symptoms, related conditions or treatment, but in many cases, the stereotypes associated with the term, Down syndrome, are going to be absent from their opinions regarding said medical condition.

I personally would prefer to eliminate the use of the term, Down syndrome. The word "Down" has a negative connotation all on it's own. It comes from the name of the individual who identified the syndrome back in 1866, but none-the-less, it would have sounded a whole lot better if the guy's name was John Langdon Up. In the context of our culture, the lay-person's terminology for this genetic condition is depressing and detrimental to those labeled with it.

When necessary to disclose my son's condition, I have decided that going forward, I will tell others that he has Trisomy 21, aka T21. The problem is that many people outside of the medical community won't have a clue as to what I'm referring. Then, a thorough explanation will need to follow. The extra work will be worth it as this will give me an opportunity to dispel some of the negative stereotypes associated with the condition and make sure people get to know Levi for who he is.

Others may disagree with my perspective on this matter, but I can guarantee that there is a whole community of parents (and others) who care for someone with T21 who would prefer that their loved one be judged for who they are and not the labels associated with an entire group of people who are as diverse as any other group of people with the same medical condition. 

And on a final note, I have a hard time making a post without throwing in a picture, so lucky you...here's a cute one!

31 for 21: Day 9 ~ A New Adventure for Levi

Okay, okay - at some point in the next day or two, I will get back to the more "serious" advocacy or education aspect of this blog for Ds. But, not today! Today I am posting a brag for little Levi.

At his last physical therapy appointment, his therapist recommended that we start working on weight bearing a bit with Levi. I've tried holding him on my lap, but instead of putting his feet down flat to push to a stand, he tends to bring the soles of his feet together, which requires extra work to get things straightened out. I decided today to try the doorway jumper to see if he'd tolerate that.

I set things up and was way impressed with how much he didn't complain about it! Not one bit! And besides the weight-bearing practice, he also got a good workout for his neck muscles and he even did some reaching for his toys. All great things we've been working on! I just had to share a short video of him enjoying his new toy...

In case you're wondering, Levi needs practice weight-bearing because sometimes kids with Ds have more difficulty with learning to stand or crawl or walk because they dislike bearing weight on their legs. Sometimes the factors affecting this include other things, like looser ligaments in the joints. But, getting him used to having weight on his hips and knees and feet can make reaching those milestones a little easier down the road.

Until tomorrow...

31 for 21: Day 8 ~ Our First Buddy Walk

Today, my family attended it's first event related to Down Syndrome Awareness. We went to the 7th Annual YADSA Buddy Walk. In the online community, the first Buddy Walk has a reputation for possibly being a difficult one. We all love our children intensely and though we know there is a broad spectrum of how children are affected by Ds, we often times will see other children or adults with Ds and presume that certain details will apply to our own children. We do this despite knowing that it may be an illogical presumption.

You wouldn't walk down the street and point out a random adult and believe that this is how your typical child will turn out with regard to appearance, behavior or ability. This also applies to people with Ds; we can't see older children or adults and presume that because our children have the same genetic condition that they will be the same. Yet sometimes we do and it can be an overwhelming emotional experience for some.

I was very proud of myself today; I am typically an emotionally-involved person, but today, I only allowed myself to see the good qualities in all the people I observed and I found so many good, notable observations. This tells me that despite the challenges we may face in raising a child with Ds, there is much to look forward to as well. That's exciting because a lot of information that's "out there" for public consumption is geared towards negative details and it makes it that much harder to not be apprehensive about what lies ahead for us. It's having an experience like this that makes it easier to visualize the good outcomes to which we look forward.

Now it's time to share pictures! Enjoy! and come back tomorrow for day nine of the 31 for 21 challenge..

31 for 21: Day 7 ~ A Weekly Update

I am a "type-A" personality by nature, learning to be a little more flexible by demand. After all, as mommy to four children, it's not exactly easy to find time to stay on top of all the little details that I like to follow. My new best friend is an app on my smartphone which allows me to do a voice recording and saves it with the date and time. I can even email it to myself so that I can have a copy on my home computer. This is the one of the few ways I have to keep track of milestones and mental notes and appointments and such.

Anyhow, my little Levi was born on a Friday and so typically I review all my little voice recording notes and update his "happenings and stats" page with what was going on his world the past week, but since I'm blogging every day this month, I'll take this opportunity to make it an actual post.

This past week, Mr. Levi has definitely starting interacting even more than before. His smiling and cooing for attention has increased. He occasionally manages to grab ahold of the toys dangling from his car seat handle. He's frequently reaching for Mom or Dad's face and loves to hold our fingers. When he's hungry, he smacks loudly on his hands and has rolled over a few more times this week.

He had another PT session on Tuesday and his therapist says she feels he's doing pretty well with head control. He doesn't always lift it very high when he's on his tummy, but when supported in an upright position, he does a fairly good job of turning it to look left and right and holding it up off his chest except for when he's rather tired. He's been spending some more time hanging out in the Bumbo and in the high chair.

Just yesterday, we received his new supplements. Instead of taking Poly-Vi-Sol and Zinc and B12, he'll be getting all his extra nutritional supplements in one vitamin specifically formulated for those with Trisomy 21. It is called Nutrivene-D. Many people have anecdotal stories of cognitive function improvement shortly after beginning this supplement, so I won't be surprised if something occurs for Levi. However, I think it may be hard to tell with him only being 3 1/2 months old. Also, I'm doing it because regardless of the short-term gains, I think it will provide him overall better health in the long-term.

I did obtain another supplement for him as an alternative "therapy" if you will. It is called Longvida Curcumin and is derived from Tumeric, a spice used in many Indian dishes. Curcumin is an antioxidant and is believed to have multiple potential benefits. Longvida™ may significantly support cognition, memory, and general health.

I do want to make sure he's doing well with the Nutrivene first though, so the Curcumin will have to wait a few weeks. In fact, thanks to it's bright orange color, I suspect it may be quite messy to put in a bottle of breastmilk, so we may just wait until Levi is eating some solid foods like rice cereal or oatmeal before introducing it.

Now for the stats and of course, his weekly photo opp!

Weight: 14 pounds, 8 ounces
Length: 24.25 inches
Head Circumference: 15.75 inches

15 weeks

He's rocked the "bald and adorable" look ~ now if he could just get to growing some new hair!