Hearing problems and Ruby has Atlantoaxial Instability

Ruby got tubes put in her ears today because she was having problems with having fluid behind her eardrums.Ruby was a very good girl for the nurses who were getting her prepped for her surgery. The actual procedure was over in about five minutes!


On the way to the hospital at 6 a.m.

 It is very common for people with Down syndrome to have some problems with their hearing.Children with Down syndrome should have their hearing checked once a year until the age of three and then every other year thereafter.Ruby was having a mild hearing loss because of fluid.This kind of hearing loss is called conductive hearing loss . Here is a talk on Hearing Concerns

Because of needing to get ready for her surgery today we were told by the anesthesiologist office to take Ruby to Children's hospital for x-ray's of her neck.We took Ruby this past Thursday. The radiologist was great and did an excellent job with Ruby.Of course miss Ruby was her awesome little self and did what I asked her.
Ruby was placed on a little stool and I held onto her from the front and the technician was behind her holding onto her.We needed to get a side view x-ray with Ruby looking down and I said,"Ruby,look at your shoes." She did look down and the tech was able to get what was needed.When we needed her to look up my husband stood up over us and snapped his fingers to get her to look up.Which she did.

The x-rays were needed to see if miss Ruby was one of the 10-30 percent of people with Ds that has Atlantoaxial Instability  (AAI) . It is VERY important if you have a child with Ds to get these x-rays done.It is recommended that all children with Ds get these x-rays before having surgery. AAI  affects the top 2 vertebrae of the neck.The lax joints allow too much movement  and can cause spinal cord injury. For now Ruby has a mild case which means she will not be able to participate in contact sports,jump on trampolines,do somersaults,or do anything that will cause too much stress on her neck.I will be making an appointment for her with an Orthopedist and she will need to have these x-rays repeated when she gets older.
Please,I can't stress enough how important this is.It can mean life or death for our special angels.

Down syndrome and Autism

I get a lot of hits to my blog from people looking up Dual Diagnosis of Down syndrome and Autism.I found an excellent talk hosted by Children's Hospital in Boston given by Dr.David Stein.Follow this link to watch it Down syndrome and Autism .I hope it is helpful to those of you who are searching for information on this subject.

God's Measurement

God's Measurement

by Linda Romblum


When God measures our worth - it's said

He places the tape, "round the heart not the head."

This thought brings comfort now to me

Concerning my son, for you see

He's not learning as he should,

All the testing and therapies - still not good.

At age 5, developmentally he's between 1 and 2.



He likes many people on this Earth

By most human values, the lesser worth.

"Handicapped", "Disabled" they're thought of.

But not so labeled by a God of love.

For who knows the worth of a human soul?

The total story is yet to unfold.

Our loving Father has a plan for everyone,

And I believe-Yes! for my son! Through a glass dimly, now I can't see.

Just what the future is going to be.

But by faith day by day, God leads me on.

His peace and power help keep me strong.

I sometimes feel a failure - trying to teach my son.



So often, I feel that Andrew, he's the one

Teaching me, -of life and faith, and depth of love

As if a lesson came from above.



His intellect may be small -

But, oh his heart says it all!

So now I pass this message on to you.

It's very plain what we can do.

Value every soul on Earth

As through God's eyes, give them worth.

Care for those who need a helping hand,

Meet their needs if you can,



The joy you'll find in such giving

Makes life much more worth the living.

And too, it will last when life is 'ore.

And we gather upon eternity's shore.

For God measures our worth - each one,

When life here on Earth is done.

And he places the tape, - I've heard it said,

" Around the heart, and not the head"

1 Samuel 16:7


7 But the LORD said to Samuel, “Do not look at his appearance or at his physical stature,
 because I have refused him. For the LORD does not see as man sees; for man looks at the outward appearance, but the LORD looks at the heart.”



1 Corinthians 13:12

12 For now we see through a glass, darkly; but then face to face: now I know in part;
but then shall I know even as also I am known.

The Beatitudes of theExceptional Child

I posted this in October of 2009.I'm re-posting because it is so beautiful.



The Beatitudes of theExceptional Child by Andre Masse C.S.E.

Blessed are you who take time to listen to difficult speech for you help us to know that if we persevere we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers for in your companionship we find havens of relaxation.

Blessed are you who never bid us to "hurry up" and more blessed you who do not snatch our tasks from our hands to do them for us, for often we need time more than help.

Blessed are you who stand beside us as we enter new and untried ventures for our failures will be outweighed by the times when we surpise ourselves and you.
Blessed are you who ask for our help for our greatest need is to be needed.
Blessed are you who help us with the graciousness of Christ Who did not bruise the reed and quench the flax for often we need help we cannot ask for.

Blessed are you when by all these things you assure us that the thing that make us individuals is not in our peculiar muscles, not in our wounded nervous system, not in our difficulties in learning but in the God-given self which no infirmity can confine.



21 things about Ruby

Because today is the 21st and October is Down syndrome awareness month I'm going to post 21 things about Ruby.

1. Ruby loves to be read to.She also loves to look at books by herself.

     2.Ruby loves pizza,macaroni and cheese,cheez its,spaghetti,garden rottini noodles with italian dressing,salad, smoothies,cooked carrots,mashed potatos,yogurt and tootsie pops.

   3.Ruby knows and uses sign language.
   4.Ruby can say her name and she also signs her name by making an 'R' over her heart.
   5.Ruby was given her sign name by a missionary to the deaf.
   6.Ruby calls her daddy "Dassy." Dassy is a mix of her daddy's name Rusty and daddy.

   7.Ruby has 4 sisters,6 brothers and 2 sisters-in-law.

   8.All of Ruby's siblings adore her.

   9.Ruby is very dramatic.She loves to have "conversations" with people while waving her hands around and then placing her hands on her hips.

  10.Ruby likes going to church on Sunday and tells me she's cute after I get her dress on and her hair done.
  11.Ruby hates having her hair brushed and fixed.
  12.Ruby can say all of her brothers and sisters names.
  13.Ruby used to call her oldest brother grass.His name is Russ but she thought we were saying grass.She would also sign grass. :)

  14.Ruby is an aunt and she loves trying to help take care of her neice when she comes over.
  15.Ruby normaly stays up until midnight.I have tried to get her to go to sleep earlier and she just wont.I'm just glad she doesn't stay awake all night like she did when she was an infant!
  16.Ruby loves dogs.One of her first words was our dog's name,'Angel.'
  17.Ruby has Brushfield Spots in her eyes and they make her eyes sparkle.
  18.Ruby loves music which she calls "mugic."

  19.Ruby loves her grandma.
  20.Ruby is very caring,if she thinks you are sad or see's you crying she very gently pats your back and in a sweet voice say,"You kay?"
  21.Ruby is very friendly and waves and says,"Hi!" to everyone.

I am so thankful for my little Ruby.She is one of the best things that could have ever happened to me.

More Alike

Farewell to John Bloodworth

My husband's uncle died this week after fighting cancer for 8 months.We will miss him dearly.He was such a kind man.He touched many lives in a positive way.I don't remember ever seeing Uncle Johnny mad.He had a beautiful smile and wonderful laugh.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Hurtful

My ten year old daughter was told by another ten year old girl, that she knows, that Ruby will never be able to attend college because she has something wrong with her brain. This little girl also informed my ten year old daughter that, Ruby's , skin is pale and you can see her veins because she has Down syndrome. My daughter just glared at the other girl and she walked away.

 I found out the little girl was given this information by her parents. I would just like to say that people with Down syndrome have differing abilities, just like all other people, they are not all exactly alike. Below are some links to articles that I found about people with Down syndrome going to college. I shared the article entitled,"Just a Normal Girl," with my daughter and showed her the picture of the young woman who has Down syndrome standing with her professor.This made my daughter very happy.

Pablo Pineda   is the first person with Down Syndrome to obtain a major degree from a regular university in Spain.   More about Pablo Wikipedia

Just a Normal Girl 

A New College Try

Barriers Falling

31 for 21 Day 6

My mother is living with us because she has Alzheimer's.Ruby loves having her live with us.Here are some pictures of Ruby taking over grandma's bed.

My Little Ham / 31 for 21 Day 5

 Ruby loves books and she loves to be read to.I was trying to catch some natural pictures of her sister reading to her but almost everytime I got ready to snap the shot Ruby would look up and flash me a grin! Stinker!

Laundry (31 for 21)

Ruby likes to follow and watch me when I'm doing the laundry.Since she was about a year and a half she has loved to throw all the laundry out of the baskets.Thank goodness she now likes throwing it all back into the baskets! In the last couple of months she has learned to say all of her siblings names very clearly and she now enjoys telling me whose laundry it is that she is throwing.Today she took one of her brothers shirts out of the closet and signed and said,"clothes!" Oh,my,I love that girl.

Ruby Grooving

Make a video - it's fun, easy and free!
www.onetruemedia.com

Mom! Mom!

I was sitting on our loveseat ,reading a digital book on my laptop,next


to my daughter E who was sharing her yogurt with Ruby.I was lost in the

story I was reading and suddenly I felt a little hand patting my knee

and a little voice saying,"Mom!" "Mom!" I looked up and Ruby pointed at

the yogurt container and she said,"Yummy!" Every word Ruby says brings

joy to my heart.I never take for granted anything she says or does

because not long ago I wondered if she would be able to talk to me and

interact with me the way she does.Even when her words and meaning are

unintelligible I enjoy every moment of what she is so dramatically trying

to tell me.

October Is......

Grab This Button

October is Down syndrome awareness month and once again I will be trying to post something everyday for the 31 days of October. I hope I can do it! We have been having some pretty crazy times around my house the last few months and I haven't been keeping up with posting much.
 One of the things that happened a couple of months ago was my oldest son going away to west Texas to work on a horse ranch. The second week he was there he was in an accident with a horse and had most of his thumb cut off! So he had to come on back home with us to heal.
Sweet little Ruby did not want to have anything to do with her big brother at first.She was wondering what that big white bandage was on his thumb.She hit the bandage twice ,which put my son to hollering of course.I explained to Ruby that her bubba had an owie. I signed and said," Owie," and pointed at the big bandage.Ruby made a sad pouty face and said and signed,"Owie!" Thank goodness that helped and she didn't try and hit it anymore! I wish I had taken video's of my son trying to get Ruby to come near him and give him hugs.She would make the cutest squinty-eyed smile and back away from him.She wasn't having any of that, thank you.

So there's my first post for this month. I'm looking forward to getting back into blogging regularly and hopefully sharing some good info on Down syndrome.



Here's my thumbless guy and Ruby isn't scared of him anymore :-)