31 for 21--Day 6

Wordless Wednesday--Laundry Day:)

Walking

All milestones come with delays...and take longer than with typical kids.  The range for walking for Down syndrome kids is pretty big.  But an average that we heard when she was born was crawling by one, walking around 2.  She didn't crawl until almost 16 months...so I didn't really expect that the walking would happen right at 2, but she has been so close for so long.  We do know a few that have walked before there second birthday and we know some that didn't walk until closer to three.  We are in the middle.

No one told me that if she learned a skill, though, she would decide not to USE that skill:)  Aubrey has been a "walker"...taking independent steps...for awhile now.  She can even turn and do some side stepping, but she has yet to decide that walking is the best way to get around.  Our PT told me today, that this is typical for many of the kids that she works with and not just her Ds kiddos.  She said that it was like potty training kids.  There are some kids that CAN do it, but it has to be up to them WHEN they will finally give in and do it.  Same with walking...so we will continue to cheer wildly until SHE decides that walking is the best way to get around...and then watch out world!

She can walk independently, as you can see from the video above that I took today.  But she scoots most of the time still.  Each week is progressively better.  Some days I catch her taking 4 or 5 steps from one piece of furniture to the other, but my aching back is ready for her to just do it all the time!

31 for 21--Day 4

I wanted to share a bit about her speech and hearing.  We haven't yet connected with any other Ds families that have a child with hearing aids or hearing loss, but are hoping that as we pioneer our way through this, we can share bits and pieces here on the blog that might help other families as they navigate these same issues later.

Our first challenge was to keep them on her:)  Someone had suggested a pilots cap or hat, but it is hot here in TX and I think that we would have bigger problems wearing tie down hats like that in 100 degree heat:)

She does pretty well...I think...and for the most part leaves them in.  I have been trying to find her triggers as to why she takes them out when she does.  I think that the car must be extra noisy or something about the car seat bothers her, because as soon as I stick her in and hop in, they are out!  I've just decided that unless someone is sitting there occupying her hands, she doesn't get to wear them in the car, because they can be a tad hard to find in a hurry when you get to your doctors appointment that you are already late for!

She also tends to pull them out whenever she sucks her thumb.  It must be noisy to her or something.

We went for her recheck last week.  And what I didn't know is that the hearing aids would tattle on me!  When they are hooked up to the computer, it tells our audiologist how long she is wearing them each day!  Four hours is not enough:(  In our defense, she sleeps for 12-13 hours at night, takes a good 2-3 hour nap each day, has a bath and bedtime routine lasting about an hour and spends plenty of time in the car running errands and picking up sisters...so 4 hours was a pretty good estimate...but not what they were hoping for.  We are trying harder to get her wearing them longer and I'm trying to notice more when she pulls them out and pop them right back in when she does.  It is better, but still not great.

We are working with an auditory impairment teacher now on helping to train her ears with all the sounds that she is hearing.  We are working on just sounds versus words.  For Aubrey it is more about the sound patterns that she is making for words instead of words.  "Ma" is what she says for more.  "Ma Ma" is for Mommy!  Nice short sounds and she might make and ssssssssssssssssssssssssssssss  for snaaaaaaaaaaaaaaaaaaaake.  We are training her to hear to patterns of speech and sounds.  Mmmmmmmmmmmmmmmmm for this is good!  Awwwwwwwwwwww when you hug someone.  She is getting there, but it is slow.

She has some new letter sounds since she got her hearing aids and I love her s's and t's and even a few l's.  I use this leapfrog alphabet game to help her with her letter sounds.  You place the letter magnet in the middle, push it and it sings a little song.  "W says wu.  W says wu.  Every letter makes a sound, W says wu!"  It is hard to listen to for long stretches each day, but so worth it in the end if it helps her...you just got to swap out the letters every once in awhile:)

More to come...and if anyone has any questions, just let me know and I'll be sure to share that information too:)

31 for 21--Day 3

Myth #2: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Woody and I were 31 when Aubrey was born.  Our chances of having a child with Down syndrome were 1 in 1000...we were lucky I guess:)

Myth #3: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Since many people have asked about testing that we had done for Aubrey and since we are expecting again, I wanted to answer that question today.

We had a 20 week ultrasound with Aubrey that looked normal.  She was the right size and she didn't show any markers.  At a routine 35 week ultrasound, they found that she was under weight and had a short femur.  We would find out a week later at our level II ultrasound, that she was going to be small and that she had an AV Canal heart defect...these are common in children with Ds...and then we waited until she was born to find out.

When we found out that we were expecting again this summer, our first thought was not on whether or not this baby would have Down syndrome, but whether it would be healthy...we still worry about that...but doesn't every parent.    We had a level II ultrasound at 13 weeks and again at 18 weeks to check on the health of this baby.  Everything looks great so far.  We did have the blood work done as well, but discussed with the doctor that we didn't want statistical results.  He could use the results as needed to determine anything further that he would need to do, but that we will happily welcome any baby into our family again and that it doesn't matter.

I find it funny that he said, "Your chances of having another Down syndrome baby are pretty low anyway."  We have a 1 in 100 chance of being blessed again...better chances than we had to get Aubrey...

31 for 21--Day 2

Myth #1: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.  

(I would say most of the time she is happy, BUT Aubrey is NOT always happy.  She has her moments...days too:)

*information taken from NDSS website:  Myths and Truths.

31 for 21--Day 1

Grab This Button

It is that time of year again.  October is National Down Syndrome Awareness Month.  I have once again committed to blogging every day in October (31 days) to help raise awareness and support for individuals (and Aubrey) who happen to have an extra 21st chromosome.  

ALL children are blessings, but I think that sometimes, we need someone with a little something extra to help us see what TRUE beauty is and to take a step back and be thankful for all the little things in life that we so often take for granted.  It is our hope that by sharing Aubrey's story, our friends and the world will see people who have challenges and disabilities in a new light...an accepting light...in a beautiful light.

Life is SWEET!

So I have finally accepted the fact that even though my girl is still so small, she really is two and she is wickedly smart!  She has come to understand that ALL doctor appointments have suckers at the end.  She also believes that since most of these appointments are HER appointments, she should get the rewards too.  So I have finally given in and let her taste these sweet treats:)

She is very careful and takes her time...maybe fear that I will take it away if she doesn't behave:)

I love this sticky mess so much!