31 for 21, Day 9: Lord, I Need You

Please pray for all the little ones on Reece's Rainbow, the angels still waiting for their forever family... so deserving of love, affection, belonging.

And please continue to ask any questions you may have about Down syndrome!

31 for 21, Day 8!

First, I want to express a HUGE thank you to all those who participated in our Giveaway!! I will be sending out individual thank you's hopefully next week. <3 I will be working on adding all the entries into my spreadsheet over the course of the weekend.... crossing my fingers I will be ready to announce winners on Monday! I will keep you posted on the progress. :)

Today's 31 for 21 post is again found on our family blog- today's subject is an Evan brag! :)) Be sure to check it out HERE.  Enjoy your weekend, everyone!!

31 for 21, Day 7, and a LAST CALL!!

Today's 31 for 21 post can be found on our family blog HERE with the topic "One thing I LOVE about Down syndrome." :)  Yes, I limited myself to just one or I could go on for a while I'm sure! ;)

Also, our Birthday Bash Giveaway ends TONIGHT!!!!  Hurry Hurry Hurry and enter before it's too late!!  Several awesome prizes up for grabs, and a tax-deductible donation towards saving the life of a child- doesn't get much better than that! :)  Please consider helping us bring our little girl home, and please share share share our blog with others on Facebook, Twitter, whatever!!  I've had friends write the most beautiful e-mails and blog posts- I am and will be forever grateful.  Just reading the words from the hearts of friends touches me beyond what I can express.  Thank you thank you THANK. YOU.  The winners will be announced hopefully Monday- after I add all the entries into my spreadsheet (which is mostly done to date) and confirm donations through Reece's Rainbow.  Best of luck to all of you!!

31 for 21, Day 6: Time's running out!

This post is going to be short since I'm sick today.... feeling like I've been hit by a Mack truck.  But.... We're down to our final 2 days of our Birthday Bash Giveaway and I wanted to throw out something extra in honor of Down Syndrome Awareness Month.  If you make a donation of $21 for that extra perky chromosome, you will receive 3 entries instead of just 2!  One entry for each of P's 21st chromsomes. :)  So go hurry and donate, spread the word- this giveaway ends tomorrow night!!!

First up- the Big Kahuna.... an Apple iPad 2 

32 GB with Wi-Fi

Your choice of black or white as well as engraving

Retail Price $599
***UPDATE***
Winner of the iPad 2 will also receive a leather smart cover in your choice of color!

 Next up:  Tastefully Simple Share the Love Gift Basket

Share the Love™ includes:

• Bountiful Beer Bread Mix®
• Homestyle Biscuits & Gravy Mix
• Chicken Tortilla Soup Mix
• Cinnamon Muffin Melt Mix™
• Chocolate Ugly Cake Mix™
• Wahoo! Chili
• The Trio
• Spinach & Herb Dip Mix
• Roasted Garlic Infused Oil
• Tuscany Bread Dipping Mix™
• Seasoned Salt
• Perfectly Potato Cheddar Soup Mix
• Oblong Storage Tote**
• retail value: $124.95

Baby Teether and Necklace for Mama all in one!!

This chic teething necklace is made with premium 100% cotton, beaded with natural unfinished beads, and knotted for a beautiful fashionable accessory for any mama to wear!  The necklace is tied back into a cute bow with satin ribbon.  But best of all, you don't need to be a mama to rock this necklace!!  This necklace is beautiful to wear on just about any occasion.  Handcrafted by my dear friend, Jenna- please go check out her Etsy shop- she has the most beautiful things there from adorable paper products to beautiful diaper cakes and gorgeous jewelry.  She is one of the craftiest people I know! 

Another super sweet crafty friend of mine, Erin, is donating this beautiful ombre purple scarf in super soft chenille.  She takes custom orders and can crochet just about anything!! You can find her on Facebook HERE. I have to tell you, last winter I ordered the most ADORABLE angry birds hat for Justin and he absolutely LOVES it.  

Erin will also be graciously donating a hat- photo coming!!

Our cousin, Jazmin, is generously donating this beautiful infinity scarf- wear it long or wrap it twice for a tighter look and feel!  You can find her Etsy shop HERE- beautifully crocheted items as well as jewelry and other art items- check them out!

Sooooooooo.... how do you enter to win these awesome prizes??  Super easy!! 

Make a donation using the Birthday Bash ChipIn Widget above- this is tax deductible!!  It goes through Reece's Rainbow so PLEASE be sure to specify "P for the LIVINGSTON FAMILY" in the comment section while checking out.  Very important, otherwise P doesn't get her birthday present!

$10 = 1 entry

 $21 = 3 entries

  $25 = 5 entries

    $50 = 15 entries

  $100 = 50 entries

After you make a donation, you can get a freebie entry each day you share on Facebook, Twitter, or if you blog about it (please share a link) - just be sure to leave a comment on this post when you do so.  PLEASE spread the word!!  This Giveaway will end October 7th at midnight Eastern Time.  This Giveaway is open to US and Canada residents only.  Each prize is separate aside from the iPad 2 and cover.  Winners will be chosen using www.random.org.

Happy Birthday, baby girl.... I can't wait to throw you a big birthday party of your very own.... You are so special and deserve a special day all about YOU. <3

31 for 21, Day 5: Mosaic Down syndrome

Question:   On Reece's Rainbow, I read that it was thought P has Mosaic Down Syndrome. How is this different from the other types of Down Syndrome? Is it a milder form? 


Excellent question!!  As most of you know, Down syndrome, or Trisomy 21, is when there is an extra copy of the 21st chromosome.  With your standard run of the mill Down syndrome that 95% of those with DS have, just like our Evan- the extra chromosome failed to separate before or at conception on either the sperm or the egg.  As the embryo grows and cells replicate, the extra chromosome is present in every cell of the body.  


In 1% of the cases, the nondisjunction of chromosome 21 occurs after fertilization- after cells already started replicating.  There is now a mixture of cells with 46 chromosomes and cells with 47.  This is mosaic Down syndrome.  Translocation Down syndrome is the third type and accounts for the remaining 4%.  With Translocation DS, part of the 21st chromosome breaks off and attaches to a different chromosome, usually number 14.  You can read more about what causes the three types of Down syndrome at the NDSS site HERE. 


Some may consider mosaic Down syndrome to be "milder," but in reality there haven't been many studies conducted comparing the two.  From ds-health.com:


At the present time, there is not much research on the similarities and differences between simple trisomy 21 and mosaic trisomy 21. One report published in 1991 on mental development in Down syndrome mosaicism compared 30 children with mosaic Down syndrome with 30 children with typical Down syndrome. IQ testing showed that the mean IQ of the mosaic group was 12 points higher than the mean of the non-mosaic group. However, some children with typical Down syndrome did score higher on the IQ tests than some of the children with mosaic Down syndrome.

The Department of Human Genetics at the Medical College of Virginia has had an ongoing study project of children with mosaic DS. In a survey of 45 children with mosaicism, they found that these children did show delayed development compared to their siblings. When 28 of these children with mosaicism were matched up with 28 children with typical Down syndrome for age and gender, the children with mosaicism reached certain motor milestones earlier than children with typical DS, such as crawling and walking alone. However, the speech development was equally delayed in both groups.

I believe the assumptions that P has mosaic Down syndrome are made by looking at her photo and not seeing many of the common facial features of children with DS, and also from the description of her being "high functioning."  We have not received any of her medical records, so we do not know her specific diagnosis or how that diagnosis was made.  Down syndrome and mosaic Down syndrome are diagnosed by blood tests, and these tests are expensive.  We don't know when P's birth parents turned her over to the orphanage, and if it was at birth- we don't know if there would be money to run this test on an orphan. We intend to ask the orphanage director about how her diagnosis was made when we arrive for our first visit.  Regardless, once we bring her home we will have the test run again along with all the other bloodwork she will have taken.  


Thanks so much for asking!  Please keep the questions coming!  I also answered a question today on our family blog regarding my two cents about "high-functioning" so be sure to check it out HERE! :)

31 for 21, Day 4: Crazy Hair Day!

Today's post can be found on our family blog- don't miss some cute pics!! :)  Also, just 3 days left in P's Birthday Bash Giveaway- don't miss out!!

31 for 21 Day 3- Answers to Questions! :)

Thank you thank you to the two people who asked questions!!! :)) And they are excellent questions at that. :)
Questions:
Young Christian Woman said...

We are in the process of adopting with Reece's Rainbow, and we fell in love with a little girl who did not have Down Syndrome and are hoping to bring her home next year. One of the things I couldn't find much information on as I tried to research Down Syndrome adoption was what the actual, day to day differences are with a child who has Down Syndrome. I am guessing it's pretty much hard to say because all the kids are so different, but maybe you could try to describe the differences? Thanks!

October 2, 2011 12:00 PM

Anonymous said...

Can you tell me how hard is it to care for a child with down syndrome? How is it different from caring for a child who does not have D.S.? Thank you.

Being that Evan is still young- only 23 months, I may not be able to personally answer these as well as someone with an older child, but I'll start by giving you my two cents worth as far as the day to day differences between children with and without Down syndrome.  The photo above can pretty much sum up how awesome it is! :)


When we are out and about- I still think there are many people who don't realize Evan has Down syndrome.  I was stunned to find this out at the bus stop just a couple months ago when school started this year.  One of the moms who has known our family for three years- has seen Evan daily at the bus stop for a year and a half- had no idea he has Down syndrome.  My point- there are very few differences at first glance between Evan and his 46-chromosome carrying peers, especially at this age.  I do think people may mistake him for being younger due to his smaller size (he is actually very tall for a child with DS but around the 50th percentile on the "typical" growth chart), he isn't walking yet, nor talking.  He's just riding along in the stroller or grocery cart looking extremely adorable and sociable, and people notice his red hair right away. :)

Now as stated in the first question, yes, there can be huge differences across the board in children with DS and how that extra chromosome has affected muscle tone, and whether the child was born with a heart defect or any other major health concerns.  We were the lucky ones- Evan was born perfectly healthy with no heart defects or anything else requiring major surgery.  The above photo was taken at 12 months when Evan had an inguinal hernia repaired and undescended testicle brought down- very minor issues that can happen in the general population as well.  He has reflux which is very common in the general population (our older son had reflux also) and that's pretty much the extent of his medical needs.  He does have regular check ups with a few specialists since children with DS are more prone to hearing and vision problems- he sees an eye doctor once a year and an ENT every 6-8 months to have his ears cleaned out; hearing tests are once a year.  He was seeing a GI doc for his reflux but that has been under control, so we just continue with our regular pediatrician for treatment.  He has been seeing the pediatrician about once every 3 months so far, but I know that will be slowing down after our next visit at 24 months.  He saw a nutritionist when we were beginning solids, but she was most impressed with his diet as far as variety and quantities go, as well as his growth patterns, so we will only go back if a need appears.  If children were born with a heart defect, obviously they would need to be followed by a cardiologist.

There can be huge differences in children with DS and their muscle tone issues- and this is what sets them apart from their "typical" peers.  Some can have trouble swallowing, some can have more trouble with their trunk, legs, and hips, some can have more trouble with their arms.  Most all children with DS have speech and language delays.  A few months ago I wrote an entire post on our family blog dedicated to muscle tone- what it is and how it affects children with DS, found HERE.

Evan does have some issues in the feeding department regarding swallowing liquids as well as chewing solid foods.  I had someone ask a feeding question on our family blog and wrote a quite extensive response- you can check it out HERE.  Feeding is really the only area I'd say Evan requires *extra* care.  And really, it's no big deal.  We add thickener to his drinks, and we cut his food smaller.  He receives feeding therapy once a  month and we are given little exercises to work on improving his jaw strength.



With speech- Evan only has a couple verbal words right now, but he has at least 20 signs.  Above is a little video of him demonstrating just a few- the attention span only lasts so long when a camera is involved. ;) I keep telling myself I need to write them all down, because I can never remember them all when his therapists ask!  I guesstimated about 15-20, but when the speech therapist asked which ones, I easily rattled off 15 knowing there were a lot more.  We own just about the entire Signing Time and Baby Signing Time series which is absolutely FANTASTIC.  These videos have taught our entire family- I was quite worried how I would do trying to learn another language, but these videos make it SO easy.  And they are absolutely adorable- all three of the kids love them.  Evan's speech therapist visits the house with his occupation therapist three times a month- once a month for feeding as stated above, and two more times for speech and fine motor skills.

Evan has NO problem climbing on top of the play table to get a better view of Baby Signing Time!

Another strength for Evan in addition to signing- gross motor.  The boy can climb ANYTHING, and is super duper fast at crawling and cruising furniture.  Seriously, blink your eyes and he is across the room.  We are working on walking- he is now taking steps while holding hands, but lacks the confidence to take steps on his own.  His physical therapist and I believe it is truly a confidence issue, period.  He has the strength and coordination, he just needs the guts to try it on his own.  His arm strength is crazy- if you clicked the muscle tone post above you saw him doing his pull ups on the baby gate.  He has also taken to doing this on the entertainment center, using the shelves and knobs as a rock wall!  I haven't caught him with the camera yet on that one.  Evan's physical therapist visits twice a month.

Social/emotional- he has been pretty much on track according to his general educator who comes once a month.  Intellectually he's right up there too.  Kids with DS are often misjudged as not being very smart simply because their speech is a little slow or slurred.  This is a muscle tone issue and not an intelligence issue.  They also can understand much more than they may be able to express verbally.



So I have rattled off a bunch of therapies- Evan receives 1-2 therapies a week: Every other Monday is physical therapy (45 mins each), 3 Wednesdays a month is OT and speech/feeding (feeding is an hour; fine motor/speech sessions are 30 mins), and the first Friday of the month is when the general educator comes to play for 45 minutes.

As Evan grows older, I'm sure the gaps may grow more, but you really can't compare kids today with adults you may have seen with DS.  The adults with DS today didn't have half the opportunities our children have now with therapies and education plans tailored to their specific needs.  Students with DS today are graduating high school, attending community college, and even living on campus to participate in college programs.  The future is SO bright, and I know the opportunities will be growing and growing by the time Evan is ready to graduate high school.

So now that I've rambled a bit- I will tell you that Evan has been my easiest baby of my three children.  He was by far the best sleeper and still is, he has the most easy going temperament and will go with the flow of most anything.  I hate to be stereotypical, but he truly is a happy child.  He is full of smiles, but also can have a temper when he doesn't get his way.  He's a busy busy bee, and keeps me on my toes at all times!!  Above all else, he is an extreme joy.  I have truly enjoyed the slower pace a baby with DS brings- milestones come a little later so you get to enjoy each step a little longer.  The baby gear gets used a little longer before it has to be sold at the next yard sale.  I can't say clothes last longer since Evan has been a fast grower, but oftentimes children with DS are smaller and stay in clothes a little longer.  He is more alike than different compared to his siblings and "typical" peers.  He has his own personality, and shares common traits with his brother as well as his sister.  He is a mama's boy and loves snuggles- he will come over and nestle right into my neck for a brief moment between playing, and it melts me every time.  He loves reading books together as well as singing songs.  So, caring for him looks a lot like caring for any other child at his level.  Our weeks are a little busier with therapists coming to the house, but overall it has been just like raising my other two children.

I'll leave you with the trailer of an ADORABLE video titled Deedah- a documentary of a brother and sister, the brother having DS.  I just purchased this at our Buddy Walk a few weeks ago and we all LOVED it.  Justin has watched it several times- he can't get enough! :)  You will see that Jonathan in the video is much like his peers.

I hope I have answered both questions (you may have read more than you were prepared for!).  If you have any other questions please please do ask them!  I would be more than happy to clarify in any area or answer a totally different question.  Thanks so much for asking!! :)