Down Syndrome - Up Up Up and Away!

Kayaking

2013-05-06T21:51:00.002-07:00

KJ, my 10 year old, bought herself a kayak on the weekend. We have a shallow but long 13 acres of water about a 2 minute walk from the house so this little kayak is perfect for zipping along out there. The girls had a wonderful time & K spent so much time out there yesterday, even paddling herself at times so we are heading back to the store tomorrow to pick her up a kayak too!

Our trusty guardian llama had to come check out the situation.

The horses were curious too & soon joined the llama in checking out the kayak.

We checked out some wildflowers on our walk out there.

& the birds along the water's edge

It was such a beautiful day after the 7 months of snowy winter that we've experienced!

Fine Motor With beads & Water

2013-04-19T11:00:00.001-07:00

I did a post with these beads recently but today we decided to play with them a different way!

I have K various different utensils to pick up the beads with. Some were easy & others a little more tricky.

The unsupervised clean up time didn't go as planned........

ps - hope the pics are in the right order. I used the blogger app to post this.

An Unexpected Visitor

2013-04-16T15:45:00.000-07:00

This morning I heard a telltale bump on the window of my front door. I glanced around outside & indeed a bird had hit the window. What did surprise me was that this unexpected visitor was an owl. We do have various breeds of owls in this area but I've only had smaller birds hit the windows before. He was obviously alive but a little stunned & would have been fair game for one of our farm cats so I picked him up & took him into the house. K & I were the only ones home so I told her where to find my iPhone & she snapped a couple of good pictures for me. The owl seemed to be recovering quickly so I soon released him onto my deck. He fumbled as he tried to fly away but after a couple of attempts he soared off across the yard & landed in the tree by the barn.

According to a Facebook friend it is a Boreal owl.

Thanks to K for the photo!

What's Wrong With This Picture?

2013-04-14T09:03:00.001-07:00

Notice how the Free Flu shot sign is printed on "feature" paper like this is some amazing deal so you better run in right away & get your free flu shot? Vaccines are free in Canada anyways.

Spring? Where Are You?

2013-04-13T10:07:00.001-07:00

When snow came in mid October this year, I bravely announced " snow that comes before Halloween never stays". Six months later I'm still eating those words.

Protein in Down Syndrome Linked to Alzheimer's

2013-04-09T17:45:00.001-07:00

This is an interesting new finding relating to cognition in Down syndrome.

http://www.nytimes.com/2013/04/09/science/protein-in-alzheimers-linked-to-down-syndrome.html?_r=1&

Fun Beads

2013-04-05T09:09:00.001-07:00

We found these beads at Once Upon a Child Yesterday (2nd hand kids stuff). Although K has fairly good fine motor skills she's never really enjoyed beading but these are so bright & colourful that she seems to like them. At first K was just really enjoying feeling the different colours, shapes & textures so I made them into a sensory tub type activity using tongs to pick up the beads. Later we'll try making some neat bracelets & necklaces with them.

Thanks to Mariska for helping me track down the beads! Here's a link to them on amazon:

http://www.amazon.com/gp/aw/d/B002YIRKKY/ref=mw_dp_img_3?in=3&is=300

I am.......................FIVE!

2013-03-21T23:32:00.001-07:00

Today is World Down syndrome day. It is a day when people try to raise awareness about trisomy 21.

Last week our family went skiing in the mountains. While K & I were waiting in line to buy a lift pass the lady standing next to us asked me a question that I hear often.

"How old is she?"

I am often asked this. The people inquiring recognize her extra chromosome. I'm sure they are genuinely kind & well meaning. I know that they look at my sweet K & think she's adorable & just want to start a conversation. What bothers me is that it is very rare that they ask the question of K herself. My daughter is judged on her ability to have that conversation before she has even opened up her mouth to speak. If she had 46 chromosomes would virtually everyone address that question to me? I don't think so. My other kids got asked this same question & proudly answered while holding up the appropriate number of fingers

My response?

"K, this lady would like to know how old you are."

As always K proudly held up 5 fingers & announced " I'm five." ......................& as always, the conversation continued. As we waited for our turn they talked about skiing, school & lots of other things that five year old girls enjoy. I hope she was able to change that lady's perspective that day.

Later that day as K negotiated a curve on the ski hill bundled up with her face obscured by her balaclava & helmet, a snowboarder went by & called out "Great skiing!" to which K responded with a thumbs up. Later, a ski patroler passed us on the hill & applauded her efforts & told her she was doing a great job. With her face covered, neither had any idea that K has trisomy 21. They spoke to her, not to me, but to K herself.

This is just a small example of how K is sometimes treated differently because she has trisomy 21. While no one is intentionally trying to segregate K, that is what is happening.

There is a man with Down syndrome living here in Canada who did a neurodevelopmental program just like we are doing with K. He excelled in school & went on the college where he graduated with his typical peers in his field of choice. He can't get a job. He even successfully completed an internship but although he did well he has not been able to get a job in his field of choice. It is assumed that he can't do the job well because he has trisomy 21 so time after time he is passed over.

Amongst our local community of family & friends K is treated just like the other kids & I am glad for that. I think my little girl is changing a lot of the perceptions about trisomy 21 locally & I am thrilled but it needs to happen on a larger scale.

Awareness is important but I wonder if there isn't a better way to go about it. If people with Down syndrome were treated with fairly & with the respect that they deserve then would we need to have awareness campaigns?

One national Down syndrome organization announced that they were celebrating World Down syndrome day by wearing "odd socks".Thankfully they have changed that to Lots of socks which is an improvement but is that really they message that we want to be sending? Really, what message are they sending? I haven't quite figured that out yet.

The other thing that crosses my mind often is that the other half of the problem is that most parents of children with trisomy 21 probably aren't even aware that we don't have to "wait for our kids to accomplish milestones in their own time". There are things that can be done. The progress my daughter has made due to her neurodevelopmental program is phenomenal! I know of other kids who are seeing fabulous results through a targeted nutritional intervention. This information that needs to be shared! We need to create awareness of the possibilities for our kids with trisomy 21.

Right now, life is sometimes overwhelming with K's intensive neurodevelopmental program, farm life, my part time business & our older girls sports activities. Besides my blog & the Unlimited Potential forum I don't have much extra time to devote to this so for the time being a lot of my advocacy work will be done like I described above. Eventually I hope to have more time to devote to this but for now, one person at a time I will let my daughter speak for herself.

The International Down Syndrome Coalition has created a video for World Down Syndrome day. The theme is "I Am". I chose today not to do an "I am" post created for K but if we ever meet in person I will allow her the oportunity to tell you for herself:

" I am Five!........................& whatever else ends up being the topic of interest in a five year old's conversation that day.

Enjoy the video

I am so Proud of this Kid!

2013-03-15T19:58:00.000-07:00

K's skiing has come so far this year.

K skied a long green run in the mountains today. So long bunny hill! K rode the chairlift up to mid mountain today! I did use a harness but honestly it was for my benefit, not hers. Remember this post? I have however quit using the harness on the bunny hill......................even when she goes on the bumps at one hill we've been to recently.

This video is from yesterday skiing around some cones at our local ski hill.

Potty Training

2013-02-27T21:45:00.001-08:00

I had a question from a blog reader about potty training. I have to admit that although I successfully potty trained four kids, I really don't have a lot of ideas as all of my girls learned fairly easily. This subject isn't fresh in my mind either as it has been almost 3 years since K was potty trained but here are some of the things that I think helped:

Although we considered potty training readiness & waited until we thought K was ready, some things we worked on earlier such as:

We talked about bodily functions when she was really little & explained what was happening when she went. We also used proper body part names so K would understand the terms associated with potty training.

Once we thought K was ready, I created a potty training story book with her as the star of the book. In the book we talked about all of the steps to successfully using the bathroom including dressing, washing hands after including the hand washing steps, etc. Later we included pages with family members pictures saying how proud they were that K was using the potty.

I did read up on the 1 day / 3 day potty training method & followed some of those ideas although some of the concepts just seemed a little harsh to me (I'm such a softie:). Based on an idea from that method we did try to set aside some time to be able to be very consistent at taking K to the potty & tried to encourage her to drink lots of fluids in order to give her lots of opportunities to practice.

Once we got started we tried to leave K in panties except at night time & rare occasions when we just couldn't chance an accident. We wanted to be consistent & our expectation was that she should use the bathroom now so we didn't want to confuse her by switching back to pullups or diapers.

We tried to be matter of fact about accidents & spoke in a positive manner about what we expected from her.

We gave K the opportunity to help with dressing, choosing panties, which bathroom she would like to use etc, so she felt that she had some control.

We purchased this potty. K loved the fact that it played music when she went & was more motivated to use it.

Some families have success with sticker charts but K was not at all motivated by that method.

That's all I can think of for now but here are a couple of links from some forums that give lots more ideas:

Here is a discussion with some ideas on Potty Training

Here is a potty training discussion on forum that has some parents of older kids with DS.

Please feel free to add any potty training tips you have by commenting below. Thanks & good luck!

What is a Hero?

2013-02-19T21:20:00.000-08:00

Recently in the news headlines was a story about a waiter who stood up for a little boy with Down syndrome after another customer in the restaurant made the comment that "special needs children need to be special somewhere else". Michael Garcia, their waiter, refused to serve that customer & they left the restaurant.

The stories, like this one, have come up time & time again on the internet, Down syndrome forums & on Facebook. The other day I punched the words "Heroic waiter boy with Down syndrome" into google & was instantly rewarded with 211000 hits. My first reaction was "That's nice, the waiter did the right thing" but as the week went by & the stories, kept coming up I found myself stewing about it.

Michael Garcia did the right thing - he stood up for a fellow human being who was being treated fairly. What bothers me is that this simple act of human decency is being treated as a heroic act simply because the little boy named Milo has Down syndrome.

Again, what Michael did was totally appropriate in my opinion but hero is the person who goes above & beyond what is expected to do the right thing. Someone who does something the average person wouldn't do & wouldn't be expected to do, perhaps even something as drastic as placing their own life in danger.

If we expect our kids with Down syndrome to be treated appropriately I think we need to expect that treatment for them & they need to expect that treatment for themselves. People who stand up for them aren't heroes. They are decent people who are behaving honorably & isn't that how we should behave around everyone? Most importantly, isn't that what our family members & friends with disabilities should expect? That they should have the same respect from society in general as everyone else would expect?

Michael Garcia isn't a hero in my opinion & we shouldn't be celebrating this as a heroic deed needing applause & accolades. He is a good man & while we should be appreciating that he did what was appropriate but this shouldn't be unusual enough behaviour to make a news story. Everyone should feel outraged when another human is treated this unfairly & we should also have the guts to act on it.

............ to Michael, if you ever chance to read this, thank you. You did a good job.

To the customer who started this with his mean, bullying words, I hope the public outcry has helped you to understand how wrong you are & that you feel the shame that you rightfully should.

After I wrote this, & before I decided whether it would annoy too many people & if I was going to post it or not, I stumbled across this post on Dave Hingsburger's blog entitled Rolling Around in my Head which I read occasionally.

Wow - he made a good point. I don't always agree with Dave but I often do & he always gets me thinking which is great. I wrote a post entitled I am my Daughter's Voice about a year & a half ago & addressed the fact that although my daughter couldn't stand up for herself yet that eventually when she was old enough that I expected her to do so as well as to stand up for others who aren't able to do it themselves. There will always be some people with disabilities who aren't able to speak for themselves & that is when people such as Michael Garcia need to speak up but its also when you & I need to speak up & one day when K is old enough I expect her to speak up too. Not because we are heroes but because that it simply appropriate thing to do because people with disabilities deserve respect.

I'd love to hear your comments on either my posts or Dave's.

"Watch Me Ski Mom!"

2013-01-29T22:11:00.000-08:00

K has been on skis for a few years now. The first year we just let her have fun gliding down & getting her balance. Last year we started teaching her to turn & stop as well as how to get on & off a rope tow & magic carpet. She has had a few lessons this year & is coming along well with her skiing. We plan to let her follow in her big sisters footsteps next year & will register her in our local Nancy Greene ski league program. It is a learn to skis program which does include ski racing but the main emphasis is learning to ski & having fun. She will be taking lessons twice a week & start her ski racing career which she is very excited about. She is already anxious to move on from the rope tow & head up the big hill! Patience my child, first we have to solidify your snow plow stops & turns:)

Riding the magic carpet at another ski hill while her sisters raced last weekend.

Riding the rope tow

Coming off the magic carpet & skiing down - but not listening to her Mom when told to make stop. K thinks its fun to just go straight down without stopping lately but is learning to do a pretty good pizza (or chocolate pie) stop when she decides to listen:)

& here's that elusive pizza stop in this next video. For some reason K thought it was funny to put her hands on her boots while stopping. Maybe because that's how her ski instructor taught her to snowplow? Anyways, my phone battery died shortly after I took this video so I couldn't get a better one but you can see her nice little snow plow stop.

For those of you who read my last post on skiing, you may have noticed that K is now skiing without a harness. We are still cautious because of her AAI concerns but are trying to give her a little freedom while still being careful.

Has anyone else got a ski bunny?

Fun Fine Motor Activity

2013-01-27T16:26:00.001-08:00

A friend gave me these sheets quite a while ago. I'm not familiar with the program these sheets are from but the writing on the bottom right says Do A Dot Art. We've been photocopying them so we've gotten a lot of use out of these sheets. Initially, when K was younger we used bingo dobbers to do them. K is working on printing now though so they are a little too easy so we decided to use them for fine motor skills instead.

K placed some glue on a spot on the paper then used the tweezers to pick up a pompom & put it in place. We are always looking for new & fun activities to do with K so it was nice that this activity was a hit.

Finding the Right Motivation

2013-01-18T22:13:00.001-08:00

Sequential processing is an important part if most neurodevelopmental programs. We play different games to help K develop her memory. Sometimes we have her do a series of actions while other times we may do an activity like have her repeat words back to us.

K will do a series of actions but has been refusing to repeat words for quite a while. We figured out a new game to get K to do it tonight.

When she was little & we were walking with her holding 2 peoples hands she liked us to swing her between us. At the time to encourage speech we had her say "123 go!" first. Tonight she wanted to do this again so I told her okay but say "5931". I repeated this several times & each time she easily got 4's. By the time we walked to the mall I tried 5 words & she got it first try! I guess we'll be doing a lot of walking & swinging from now on!

What activities help motivate your child?

Why I don't post my daughter's name or picture on my blog

2013-01-16T21:04:00.000-08:00

I had a comment left on my blog tonight........by anonymous of course, asking why I don't show my daughter's face. I've addressed this question in the past but it's probably buried under many other blog posts so I'll answer again.

Anonymous asked if I don't post her picture because I'm ashamed of her. That is so incredibly far from the truth. K is adorable, beautiful & I am truly the proudest mom in the world of her as well as my other daughters, whose faces I also don't post on my blog. Every night when I tiptoe into her room to check on her before I go to sleep the same words just instantly pop into my head " She is so perfect." It's not planned, my mind just can't look at her sleeping peacefully & not think that. " She is so perfect." I don't show pictures of my kids faces to try to give them some privacy. If i am posting a story which involves my older daughters I usually ask their permission first, except in the case where I'm sure they'll agree. At 5 & 10 years of age, I really don't think K or KJ truly understand all of the implications to posting things on the internet, heck I probably don't even fully understand. I do however think it is important to share how well K is doing & what methods have worked for us so I think this blog is important. Perhaps at some point when I think all of my kids are old enough to fully understand & give their permission, I'll use their real names & full photos but until then I feel I need to respect their privacy.

Some days I would like to post more pictures. Some things just don't come through in words........the mischevious glint in K's eyes she's scheming up a way to get one more story at bedtime, the way she looks at her sister T because they share a special bond that words just can't describe - I'm sure they each feel the sun rises & sets on the other, The cocky look K has as she blasts out her sisters loud rock music............I could go on & on but the point is, it is not my decision to make & I need to wait until she can make that decision herself.

I welcome any other questions anonymous or anyone else may have:)

Geography lessons - a trip to the USA

2013-01-03T07:52:00.001-08:00

We are holidaying, mainly in Montana, for a few days. K has travelled from one end of Canada to the other but has never been out of the country before.

I like to add a little learning in with just about everything we do & travelling is a wonderful way to teach a sone geography. KJ, my 10 year old is learning about all the Canadian provinces in school right now so I tried to build on that a little & found a mapping activity which includes all the provinces & territory's. I found another of a fictitious community which teaches north, south, east & west. I printed off a Montana fun sheet with info & activities as well as USA & Montana maps & flags. Finally I printed off some geography word search puzzles. That should be enough to keep her busy for a while!

For K, I printed off the some maps & flags to colour then added in some math & printing sheets.

Before we left home we talked about the USA & Montana & found them on the map. We looked at the distances between places & talked about how we have provinces & territories & the USA has states.

We explained what was happening at the border & about her passport & how this was the point that we were leaving our country & entering a new one.

We talked about the differences in our money & K is excited to have some crisp new American bills in her wallet.

Once we arrived at the hotel I was given a simple map showing our room, the pool, the restaurant etc. K immediately decided it was her map & loves reading it & being our tour guide around the hotel.

We are also going to take in a couple of museums on our trip including a children's museum.

Once we get home in sure we'll do a few follow up activities as well!

How do you add learning activities into your holidays?

First Ski Day of the Season!

2012-12-17T11:31:00.000-08:00

K tried out her new skis a couple of weeks ago. This was supposed to be the year that she skied without a harness but after her AAI X-ray came back on the questionable side, I decided that I wanted to more control for at least a little longer. K is just starting to be able to turn & stop so once she is able to ski in control I'll finally ~~untie the apron strings~~ take off her harness & let her ski totally independently.

K only skied for a couple of hours but did well & seems to be remembering all she learned last year. Our hill is opening this weekend so we're excited to go again!With 3 older girls who ski race competitively the local ski hill will be our second home for the next few months. K will be moving up from just having mom as her instructor & will be taking regular lessons so I'm anticipating big improvements in her skiing ability this year.

My Awesome Christmas gift!

2012-12-14T09:22:00.003-08:00

K's fine motor skills were still testing at or slightly above average for a typical child her age when she turned 4 however she hated any kind of drawing & colouring. Although she hasn't had her fine motor skills tested lately I was quite sure she had fallen behind due to the lack of writing pratice. In the last 7 or 8 months however she has suddenly decided it is great fun to draw & colour & with many different mediums - paint,crayon, pencil, iPad letter drawing apps, magna doodle etc. All that practice has been paying off & it has been very noticeable in her drawing,colouring & printing. We always get K to practice writing her name on worksheets & yesterday she insisted that I write my name first. I obliged & the she proceeded to write too. After a few moments she said "Look Mom!" I expected her to have written her name but instead I saw this:

In case you can't understand my messy writing hers is the Mom on the right!

Abbott

2012-12-11T12:46:00.001-08:00

If you are planning a donation this holiday season please consider donating to Abbott's fund on Reece's Rainbow.

Abbott has been transferred to an institution & desperately needs funding to aid in his adoption.

If you aren't planning a donation will you please share his picture or repost this?

Abbott was born the same year & month as K & I've always had a soft spot in my heart for him. He was transferred over a year ago & it breaks my heart to imagine if it were my daughter in that situation.

Thanks everyone:)

http://reecesrainbow.org/8104/abbott-3g

Fun Christmas / Winter activities

2012-12-09T11:48:00.001-08:00

I was looking for some fun but simple Christmas worksheets for K today & came across this blog. Many of these ideas are a little too easy for K but sometimes I like to find things for her that are just fun & don't require her to work hard. This winter Wonderland Pre-K pack has about 25 pages of brightly coloured activities & I'm sure K will love it!

Funnix Beginning Math Free Until December 15!

2012-12-08T17:44:00.000-08:00

I haven't tried this program yet. I just downloaded it but haven't had a chance to even look at it yet. I thought I'd pass this on quicly because the free offer is only good until December 15th.

Funnix Beginning Math

Check back in at that site between December 16 & 31 to download their Funnix Reading program.

I did download this program the last time they were giving it away for free & talked about it here but I'm not sure if it is the same program or if it has been changed. I do know that they have tried to reduce the price to make it more affordable.

5 going on 13

2012-12-06T21:53:00.001-08:00

This winter we've had one snowstorm after another so the other day when I was in town I decided I needed a new toque. I found this one in the clothing section at the local health food store & loved it's funky colours so I bought it.

The next morning K & I were getting ready for me to take her to school. I put my toque on & bent down to help her tie up her boots. K looked up at my hat & tried to take it of my head. I told her to please leave my hat. Without hesitation, in a voice that sounded more like a 13 year old, she responded, "Mom, you can't wear that!" I wasn't sure what she meant so I explained that this was my new toque & it was cold so I was wearing it to take her to school. "No mom, you can't wear that!" she said & again tried to take it off of me. "Yes K" I insisted "I am wearing my new toque" She repeated it 3rd time & again that disgusted teenage voice came out. "No, Mom, you can't wear that, you're too old for it!".

I love how this kid can make me crack up with laughter at her 5 year old adorableness one moment & in the next leave me wondering how she can be a teenager 8 years ahead of schedule.

AAI - Atlantoaxial Instability

2012-11-20T11:22:00.002-08:00

Sorry for the blurry picture but here's evidence of K's fascination with all things doctor...........most 5 year olds probably wouldn't notice this poster. See how K is pointing out the details to me? She had to read most of it too lol!

Atlantoaxial instability is a separation between the C1 & C2 vertebrae. In the last few days I've been doing quite a bit of research on this subject & in most cases I read that a separation of up to 5mm is considered normal "for kids with T21" although in some reports I've read up to 4.5 mm. For kids with T21 is in quotes in the above sentence because I hate when doctors clarify things that way - there are many times when doctors decide that things are "normal" for kids with T21 which they would treat in typical kids - thyroid problems are a common example of this. Anyways, back on topic again..........

Occipital-atlanto instability is also not uncommon in kids with T21 & occurs between the occipital lobe & C1 vertebrae. The incidence of these conditions is anywhere from 10 to 30% & very few of the people affected have any symptoms. Here is a quote from the NDSS page on AAI:

""Most importantly, symptomatic AAI is apparently rare in individuals with DS. In the pediatric age group, only 41 well-documented cases have been described in the published literature..."

Yet I can think of a couple of kids who weren't even 3 when they were affected. Off the top of my head, there was a little boy whose mom used to post on the BBC DS forum who went in for a T&A surgery but was X-rayed first & ended up having surgery for AAI instead. Another is little Rhiannon who was about 3 months older than K. She passed away due to undetected AAI. So why aren't we testing? It occurs in 10 to 30% & most have no symptoms? I understand that an X-ray is not a perfect test for diagnosing AAI but in my opinion a less than perfect test is better than ignoring the potential danger.......& this is potentially very dangerous.

We've been considering having a screening X-ray done for K since she was almost 3 years old. It used to be recommended at around that age. We choose to wait for 2 reasons: By age 5 the child's bones have calcified more providing a better X-ray & because we only wanted to have to do it once so that we were exposing her to less radiation from the X-ray especially because the thyroid cannot be protected during this X-ray.

In the meantime, the guidelines for this diagnostic test changed both in the US as well as here in Canada. Although I printed the Canadian guidelines off for myself as well as an extra copy for K's pediatrician, D r. S, last summer, I can't seem to find the link, but here are the American (AAP) guidelines which I'm sure are quite similar. They no longer recommend a diagnostic X-ray. Again, I completely disagree with this.

Here is the section on AAI & AOI taken directly from the Official Journal of American Pediatrics:

"

Atlantoaxial Instability

Discuss with parents, at least biennially, the importance of cervical spine-positioning precautions for protection of the cervical spine during any anesthetic, surgical, or radiographic procedure. Perform careful history and physical examination with attention to myelopathic signs and symptoms at every well-child visit or when symptoms possibly attributable to spinal cord impingement are reported. Parents should also be instructed to contact their physician for new onset of symptoms of change in gait or use of arms or hands, change in bowel or bladder function, neck pain, stiff neck, head tilt, torticollis, how the child positions his or her head, change in general function, or weakness.

The Asymptomatic Child

Children with Down syndrome are at increased risk of atlantoaxial subluxation. However, the child must be 3 years of age to have adequate vertebral mineralization and epiphyseal development for accurate radiographic evaluation of the cervical spine.⁵² Plain radiographs do not predict well which children are at increased risk of developing spine problems, and normal radiographs do not provide assurance that a child will not develop spine problems later.^53,54 For these reasons, routine radiologic evaluation of the cervical spine in asymptomatic children is not recommended. Current evidence does not support performing routine screening radiographs for assessment of potential atlantoaxial instability in asymptomatic children.^55,–,64 Parents should be advised that participation in some sports, including contact sports such as football and soccer and gymnastics (usually at older ages), places children at increased risk of spinal cord injury⁶⁵ and that trampoline use should be avoided by all children with or without Down syndrome younger than 6 years and by older children unless under direct professional supervision.^66,67 Special Olympics has specific screening requirements for participation in some sports.⁶⁸

The Symptomatic Child

Any child who has significant neck pain, radicular pain, weakness, spasticity or change in tone, gait difficulties, hyperreflexia, change in bowel or bladder function, or other signs or symptoms of myelopathy must undergo plain cervical spine radiography in the neutral position.^55,65 If significant radiographic abnormalities are present in the neutral position, no further radiographs should be taken and the patient should be referred as quickly as possible to a pediatric neurosurgeon or pediatric orthopedic surgeon with expertise in evaluating and treating atlantoaxial instability. If no significant radiographic abnormalities are present, flexion and extension radiographs may be obtained before the patient is promptly referred.^23,62,63

^{As I said, I completely disagree with these recommendations so this spring I asked K's pediatrician to have this done. As per the guidelines, he didn't feel it was necessary but ordered it anyways because he respects my need to have certain extra testing done for my peace of mind.}

^{We actually went to have the X-ray done a couple of months ago but when we arrived I realized that the orders were just for a regular side view of K's neck. I had researched in the past & even spoke with an expert at a US Shriner's hospital who said flexion & extension views were necessary to diagnose AAI. I refused to allow the side view so it was back to the pediatrician to inform him about which types of X-rays are necessary. Thankfully he not only understands that I research all of my daughter's health concerns but actually recommends parents be very informed so he happily accepted my recommendation & changed the orders to include flexion & extension views. If you are getting this done for your child make sure they do the proper views.}
^{K has been fascinated by anything to do with doctors lately so she was quite willing to cooperate for the X-ray. She happily sat on the stool & carefully followed the directions for each X-ray view, flexing her neck so her chin was tucked in & extending it back when asked.}

^{I checked that test off my list & went on my way fully expecting to never hear a thing about it. Within a few days I received a phone call. Of course they wouldn't share any details over the phone but they did admit that K has AAI. They didn't actually have any appointments left until early December but the kind hearted nurse understood that I have no patience when it comes to the health of my kids & squeezed us in for an appointment 2 days later.}

^{Of course I spent the any time I could during that next 2 days at my computer & here are a few links that I found very helpful.}
^{The Garden of Eagan is a blog written by a mom whose son has had successful surgery for AAI. Her youngest also has this condition & is being monitored. She is very knowledgeable & has been wonderful at answering my questions.}
^{Life With My Special K's is another blog by a mom whose daughter had spinal fusion surgery. This is a very informative post.}

^{I really like Paul Doney's AAI page on his Super Down Syndrome site. Not only is it full of information, but I found the diagrams made it easier to understand & it has links to some studies & other info on the bottom of the page.}
^{During K's appointment I found out that K does have AAI & the gap is 4.7mm. As I said earlier, according to my research some feel that}^{that a separation of up to 5mm is considered normal " although in other reports I've read up to 4.5 mm. At 4.7 K falls right in the middle of that area. Upon receiving the X-ray report K's pediatrician had phoned a neurologist at our local children's hospital. The neurologist feels up to 5mm is normal for kids with T21 so he said K should have no restrictions on her activities. I questioned Dr S on activities such as skiing as we did just buy K a new, larger set of skis last week & he replied that the neurologist said no restrictions. I admit that I'm a little nervous about the gap in K's neck being within that grey area & so close to being at a level that would require restrictions on her activities. On the other hand, the gap rarely widens unless there is a trauma to the neck. The other thing to consider is that the X-ray is not always a reliable test. My plan for now is to still be a little more cautious like we've always been. K won't be allowed to do summersaults & we'll keep using a harness when skiing until we are confident that she can ski in control. I will be requesting a followup X-ray at some point down the road.}

Today, Down Syndrome Sucks

2012-11-15T13:45:00.000-08:00

I don't worry about Down syndrome itself I don't stress about the future, I just don't..............it's the medical stuff that get me.

Down syndrome itself doesn't bother me, but there's always that nagging worry that the other shoe will drop. It happens less & less as K gets older. At first it was her heart...& that one still comes up every now & then. Then it was sleep apnea, high iron levels, thyroid, hearing & vision & of course there's the ever present nagging thought in the back of my mind that kids with DS are more likely to have leukemia. You understand right? That list just goes on & on & that's what I sometimes have trouble dealing with.

K finally had her AAI x ray done last week. I was so sure it would be fine but she does indeed have AAI.

I think I would be totally at peace with Down syndrome if if it weren't for the potential medical issues. I don't cry about Down syndrome but I've been hiding my tears all day, from the doctor, from an acquaintance who I wasn't wanting to share with, from the man from the Internet company who is trying to overcharge me (after my morning he got a polite but demanding earful!) & from K & my next youngest KJ, because although I explained it & will explain it to their older sisters when they get home from school, I don't want to worry them.

Today I feel like calling my mom (who lives to far away so I won't even tell her anything until I know more facts) to come over, give me a hug & help out with meals & kids & everything so I can just go hide somewhere & cry because today, Down syndrome sucks.

Would you "change" your child with Down syndrome?

2012-11-09T21:28:00.000-08:00

I posted a link to this study earlier this morning on my Face Book page. It is a fascinating article on how scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Trisomy 21. The discussion on Face Book was quite interesting & I'd like to share more of my thoughts here.

Some of the discussion was about changing our kids. This treatment is not intended to do that but I'm going to address it anyways. I would not want to change K but in her case I can't see how "taking away" her Trisomy 21 would really change who she is. Besides, we've been doing that already. We have been working with K since she was a newborn using her neurodevelopmental program & supplements. In the last couple of years we have used more vitamins & supplements to help her. We have taken her to a chiropractor since she was a few weeks old. K has been seeing a natural doctor occasionally & sees a cranial sacral therapist once a month. All of these things have been done to help her overcome the effects of the extra 21st chromosome. Have we changed her with all of this effort? Probably............& I hope so, I love who K is - she's amazing & so much fun to be with. Maybe if we hadn't done those things she would not be able to communicate who she is as well as she does. Who knows how different she would have been had we not done all of those interventions? K had a strong, vibrant personality that shines through regardless of that chromosome - removing it would not change her. She'd be the same little girl who perhaps could run as fast as the other kids or speak just as clearly without quite so much effort.

I asked the rest of the family individually after I wrote this if they thought removing the chromosome would change K. All agreed that it would not although one of my daughters said she'd just be able to express her sauciness better - & she's probably right!

The one possible medical scenario mentioned was the possibility of being able to aid in the recovery of patients who have leukemia by giving them a stem cell transplant using their own stem cells that have had the extra chromosome removed. I have a friend whose little girl is fighting leukemia right now. Her daughter is a fighter & doing great but I'd love to tell her that we could change her daughter's stem cells to give her even better odds of surviving.

Later in the article it talks about possible applications with early aging or adult mental decline. My thoughts immediately went to Alzheimer's disease. We know that's a pretty universal concern for people with Trisomy 21. I would welcome the chance to change my daughter in those ways.

When the question of changing our kids has come up in the past my mind immediately jumps to the medical issues. K's heart problems are very minor I'm told & I'm thankful for that but it's still a nagging worry. Yes I'd change that too.

Often when we talk about changing her kids we mean their cognitive function. My last point on this subject is that many of us are already doing this. It is commonly known that our kids are much more likely to develop thyroid problems. Untreated thyroid problems lead to cognitive decline. We have no problems treating this cognitive problem so why wouldn't we treat other cognitive problems if it were possible?

Edited: I'm adding one more point here. Aren't we all changing our kids any time we take them to any mainstream therapy too? The point of therapy is to help our kids gain skills, I'm just going about it in a bit different way.

I also want to clarify, & I have said this before but to repeat in case you haven't heard, I will always look into any new treatment or drug very carefully before giving it to K. When it comes to new drugs I am especially leery because I believe every drug has side effects & in many cases there is a safer natural alternative.

My other point is that we don't have to wait for a "cure" to get started helping our kids. I blogged about this here the other day. There are so many different things that we can try. Some may work for one child but not another but there are lots of options & I'm excited to see new research being done because even though we have all of those options I'm sure there are a lot of things we are missing that will greatly benefit our kids.

I'd love to hear your thoughts on this. Would you "change" your child?