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...