Jack’s 5th Birthday

It was kind of a low key day.  Jack doesn’t quite “get” the concept of a birthday and we didn’t have a big party (maybe this weekend).  He did go to school where they sang him the “Happy Birthday” song.  Then we got lunch out with our 2 favorite playmates, Braska and Kinlee at a playplace.  Seemed like a good idea but Jack pooped, Braska went up and didn’t want to come down, Dasha couldn’t go up except for trying to climb up the slide, and Kiki was a generally unhappy camper most of the time.  Okay now it sounds kinda funny but at the time RK and I could not get out of there fast enough :(.

We went home and both littles went down for a nap which Jack never ended up taking which is a bummer because he was cranky all evening when we tried to go to dinner with Grandma Judy.  We didn’t even get to sample the yummy cupcakes our awesome neighbor Linda made.  Or open any presents.

Oh well.  This just prolonges the birthday celebrations!  We got a few cute pics though -

The traditional Jack and Braska birthday photo (clearly neither kid was thrilled).

My view at dinner most of the time :(

Thank goodness he cheered up a little after we got home and pj’d and ready for bed!!

I can’t even believe how much I love this little boy.  I also can’t believe it’s been FIVE years since his birth!  I can remember nearly every minute of that day like yesterday.

HAPPY BIRTHDAY CAP’N JACK!!!!!

Halloween Preview

My sweet little preschoolers had their Halloween parties (or what ever we’re supposed to be calling it now) today.  So last weekend I began to seriously look for costumes.  Every year Jack is something that has “Jack” in it – Jack-o-lantern, jack hammer, etc.  But this year I wanted to do something with the 2 of them together and couldn’t think of ANYTHING.  (If you do, please let me know for the future!)  So I went through the costume box downstairs and found the cow costume that fit Miss D :).  I did buy a new hat to go with it since the one that came with it was horrible.  So for Jack?  Easy.  The farmer!  My uncle sent him a hat a couple of years ago after Jack loved his (he’s a real farmer donchakno?) so I bought overalls and a plaid shirt (which I love on him btw so he’ll wear it lots) and voila – a farmer and cow.

And they seem okay with them.  It’s always tricky to find a costume your kid will wear and can be adapted to this crazy weather we’re having.  Halloween could be 30 degrees or 80 here!  So at Jack’s party they did some face painting; or in Jack’s case, hand painting.

After I took the pic of them together Jack insisted I take this one of his painted hands (and he had to be looking at them too apparently).  What a precious little boy.  How did I get to be so lucky to be mommy to these 2 precious sweethearts?!

Blog Hop

Bear with me - I have no idea what I'm doing with this! But it sounds like a whole lot of fun.

Check this out:

Orthotics

One of the possible and fairly common traits of Ds is low muscle tone. This results in the "floppy-ness" of most newborns with Ds. In our case, low tone is why Jack didn't even hold his head up for such a long time, like close to 6 mos. Also that's why he rolled over later, sat up later, and walked later. Also with the walking, our Jack rolled his ankles in slightly when he did learn to stand and begin walking, so our physical therapist recommended some orthotics to help him keep his foot/ankle in proper alignment while his muscles strengthened and learned to line up without support. I have a pic of his first pair somewhere; I'll find it. Until last year, Jack wore his Suresteps whenever he wore shoes. Last year he got new shoe inserts nicknamed hot dogs. They just sit inside the bottom of his shoe and support the sole of the foot, instead of going up over his ankles too.

When Dasha came home she got Suresteps too. She had such tiny little feet when she first got home. Her pt told us they would grow when she started being able to use them more and by gosh they sure did! So Miss D grew out of her Suresteps after a few months.

Right now Jack and Dasha are both waiting for new hot dogs, hopefully they'll be in this week and then both kids can get new shoes to wear with them. Maybe I can get them matching shoes, or the girl version and the boy version of a shoe! Pics to come (posting this from a different computer than the one all the pics are on!)

Wedding

I know that I am supposed to be blogging all about Ds this month.  But life is still moving along and today was a super big huge very important day that has nothing to do with Ds or my 2 littles.

Today was the wedding day of a boy that is not actually related to me.  However, he's been Andrew's best buddy since kindergarten, he's spent lots of time in my house, he's gone on vacation with us and camping with us, and I love him as much as any of my nieces or nephews.  What an emotional day!

Tony and Taylor, we love you both lots, and wish you every bit of happiness in the years to come.  We’re so glad to have been a part of your amazingly special day!

Ds fact for today

ds fact for today: ds has several physical characteristics that can include low muscle tone, flatter nasal bridge than usual, a bit of a slant &/or extra folds of skin at the corners of the eyes, smaller, low-set ears, and a large gap between the big toe and the other toes. This is not a comprehensive list, nor does a baby have to have all of these features. Also there is no correlation between physical features and mental comprehension. Since there is pretty much always some degree of mental retardation (which only means the person probably has some delay in learning skills), this is important to remember.

Jack has always had better gross motor skills than speech/language. He uses several signs and now has many words that he uses and I think other people can understand him too.

Dasha seems to be following along Jack's footsteps. She's stronger in gross motor but right now she has NO words. She makes sounds and sometimes they are very purposeful - she's trying to repeat what we are saying but it doesn't come out just right. She understands pretty much everything we say to her though, and she has several signs that she uses (more, drink, all done, book, bath, go school).

The important thing is, both of them are growing, learning (in their own time), and healthy!

And a blast from the past:

Homecoming!

I almost forgot to post about this!  Every year we watch the homecoming parade our high school has.  My high school didn’t do that so I’ve always thought it was cool.  From the time my older kids were in elementary school, I’d take whoever was with me and go up to the parking lot and watch the high schoolers as they  enjoyed their time to be silly.  We get to sit right on the curb!  There’s always a firetruck and police car as well as several floats created by each class and several clubs or groups.  And of course all the homecoming attendants :).

 

Andrew walked the parade every year as a member of the football team and I was a little bummed that we wouldn’t have anybody walking to cheer for this year but M came to the rescue!  The orchestra class decided to do a float which turned into a pick-up but they all threw candy anyway!

There’s my Madelyn getting ready to toss her little brother and sister some candy!

That night we went to the football game – Dasha’s first!

We all had a great time!  We won!  As a matter of fact our team id now at 7-0!  Too bad this great season is happening after Andrew’s time with them though.

And then of course, the Homecoming Dance was Saturday.  M and Charlie looked great, as usual!

Poor Jack isn’t feeling so great

I was going to say that Jack isn’t feeling so hot but of course that is exactly the problem – he is hot.  Right around 104, says the thermometer.  This started on Sat.  Jack felt a little warm and was much less busy than usual.  Sun he seemed fine.  Mon morning, a little warm again.  No actual fever, but he was just not himself.  Today, Wed, he felt warm again but no actual fever and coughing.  I’ve had a heckuva headache all day so after Jack got up from nap he and I were hanging out in the recliner.  Just before dinner I felt his head again.  HOT.  I forced some ibuprofen into him and he’s drowsing here next to me in my bed (we put Daddy in charge and escaped from the craziness in the living room).  He’s just so dang sad.  Poor baby.  Dasha doesn’t understand why he doesn’t want to play.  Hope she doesn’t up with it too.

Jack and Dasha’s sibs

Fact About Down Syndrome : In a recent study by Brian Skotko, M.D. it was found that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.

Pretty cool, I think.  So far, my oldest 3 seem to enjoy their little siblings.  Madelyn wants to show them off all the time.  All of them come home from school or wherever and greet them and carry them around and play with them.  And if any of the older 3 sit down, forget it!  There’s a little person on or right next to them!  So precious!

Andrew seems to be a preferred target.  He’s the sturdiest and has the most “holding” space!  All he has to do is remain in one spot for more than 3 seconds and see what happens??  I love it!!

I knew I wouldn't make it :(

Yep, missed yesterday. Oh well, this will be a very short, cheating, catch-up post.

I think I will get in writing what I would like to remember to blog about this month:

-Jack and Dasha's heart issues
-J & D's school, therapists, therapies, orthotics
-more facts (I will be mostly stealing these from other bloggers or fb posts!)
-information about Reece's Rainbow and kids with Ds from Eastern Europe
-the ever-popular, "21 Facts about Jackson" (I'm saving D's for her birthday, which is, in a cool twist, on Mar.21st!)
-more stuff from past posts

Anything else???

It's a widely known fact that when mothers are told the babies they are carrying have Ds, most of them terminate. A statistic I hear/see over and over again is 90%. 9 out of 10 women eliminate the baby they are carrying. To me, that is shocking. I also hear that it is very common for most ob's to encourage this termination, often citing out-of-date or incorrect information about what such a baby would be like.

I was lucky. My Dr gave me the news and told me I had "options" if I cared to discuss them. I did not. If you want to go back and read about how we foud out that Jack would have Down syndrome, go here. My Dr got me in touch with the Down syndrome Association and said "okay, then we will treat this pregnancy as any other unless we learn we have some other health concerns". And we did. We laughed about my weight gain, and how active Jack was, and took bets on my measurements at each visit. He's an awesome Dr and I am grateful he took care of us until Jack was born.

I want to feel sad for these other moms. Clearly I should; they are missing out. Ds has brought much joy into my life and I am grateful. But I am mostly angry and irritated at them. I hope to become more enlightened and forgiving at some point. I have some amazing friends who are leading me that direction but I'm not quite there yet.

I mean, look what they are missing out on:

3 days old and I was already head over heels in love.

What can kids with Ds do??

Well, let's see.....

(Clearly, this will be a partial list only. There's no way I could ever cover an entire list! But I am going to come up with 21 things about each of my cuties with Ds during this month, so this will be a little start.)

Dasha loves to "read" books. Hopefully she'll do it on her own some day. I'll probably be in trouble for posting this pic, but she loves her grandma too and I thought it was sweet.



Dasha is also learning signs, loves to swing, and RUN while holding someone's hand, she wrestles with her brothers, and she gets really excited to go to school each day.


Jack is learning to use the computer! He asks for this web series called Bunny Bop. He loves to watch videos on youtube sometimes too, especially Laurie Berkner and Veggie Tales songs. He can even hit the play button to start them over!

Jack plays with the dog, has excellent ab strength, loves Elmo, can use a fork and spoon, and gives super duper hugs and kisses! (He loves to kiss "owies". The other day I tripped on something walking into the kitchen and said "OW!!" really loud. He ran in and gave me such a nice smooch on my foot. It was the sweetest thing!)

Both kids love watching Signing Time videos, eating cheerios for snacks, removing the bookmark from anyone's book left unattended, and pushing doll strollers around as fast as they can!

And both are loved so very much!

Fact #1

Not sure how many facts I'll get to, but here's the first one :)

Fact About Down Syndrome #1: There are 3 types of Down syndrome - Nondisjunction which makes up about 94% of all cases, it means every cell has an extra 21st chromosome. (This is what Jack and Dasha both have.).
Translocation makes up 3-4% of all cases. This can be (but is not always) an inherited form of Down syndrome.
Mosaic makes up 2% of all cases. This means that not every cell has the extra chromosome, only some of them do.
The diagnosis of Down syndrome is made by a chromosome analysis test called a Karyotype.

Here it is again - Down syndrome Awareness month!

Last year I signed up to blog every day for the month of October. That didn't exactly go so well. I'm not a great blogger most of the time anyway, but a post every day?? Yeah I wasn't able to pull it off. So instead of disappointing myself again, this year I did not formally commit, but I'm going to do my best to post several times a week.

Some things I'm thinking about are Ds facts, past posts about Jack's birth, diagnosis, etc., and stuff about Dasha (her country's views on Ds and the adoption procedure, stuff like that). Pretty much anyone who might read this blog already knows all this, but I might think of something new :).

I've started out with a pic of my cuties with Ds! Time to get out our yellow and blue Ds awareness ribbons and think about Jack's birthday! He'll be 5 at the end of the month - how the heck did that happen?!?!