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 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...)

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 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!

31 for 21: Day 6 ~ The Buddy Walk

In 1995, the National Down Syndrome Society started the Buddy Walk - an event to raise funds for research and to promote acceptance and awareness of Down syndrome. That first year, 17 walks occurred throughout the country; this year, over 300 are expected to take place.

In 2010, over 285,000 people raised more than $11.2 million to benefit local programs and services as well as national advocacy initiatives. This year, my family ~ new to the Down syndrome community ~ is doing it's part and participating in our local walk.

Here  is the link to the National Down Syndrome Society's page regarding the events if you'd like further information. If you'd like to support my team, which is walking on Saturday, October 8, 2011, you can visit our fundraising page here.

Thank you for taking the time to read this post and I hope that you'll be inspired to donate or participate in your local Buddy Walk!