12.9.09 On the 3rd Day of Christmas

my true gave to me. . .
trim around the new attic door.  Sorry, no picture this go around.  I am being lazy today and didn't take a picture and upload it to the computer and then the blog . . .  Wait, I am not being lazy, I just ran around the house like crazy but got nothing done. So, I am cutting corners on the blog today.

Jan to the Rescue!  Jan is our Early Childhood Intervention Caseworker.  She came by today to check out Ellie's progress.  Ellie had just woken from a nap and was a little out of sorts.  So during the visit I fed her.  Bear Bear likes to "hold" her bottle with both hands.  This is a BIG step.  Bringing her hands to midline was our goal for the past 4 weeks.  We had been doing all of these positions to get her to do just that.  She can now grasp a rattle in the side lying position and she puts both thumbs towards her mouth while back lying or sitting.

Putting weight on her legs was also one of our goals. While I was burping Ellie, she pushed up on her legs and held her head up.  Jan almost fell off the couch.  Ellie is advanced in some areas, normal in others, and behind in others in comparison to children with the typical 46 chromosomes.

As seen in previous pictures in the blog, Bellie Bear is an excellent head lifter in the tummy time position.  That being said, she still needs to gain a lot of head control.  This is where she is behind.  She hangs to the left or to the right while sitting and occasionally during tummy time--hence the accidental rolling over.  Jan went over some new techniques to encourage Ellie to keep her head midline and to develop good neck and shoulder muscles.

Some of this is due to DS.  It is not just hyptonia, but these children are known for performing "atypical" movements.  Ellie's favorite is the back and neck arching.  She looks like a baby gymnast.  Watch out Shawn Johnson!  This stretches the front of the neck and belly but it doesn't help overall trunk support and head control.  Jan walked us through a series of exercises that counter-balance her crazy flexibility.

Nonetheless, Ellie Marie is doing great and is developing more on schedule (and ahead in some areas) than most children with DS--not that it is a competition.

On a side note, Andrew made lunch today and yesterday and he made dinner last night.
Yesterday's Lunch: Mac N Cheese with hot dogs
Yesterday's Dinner: Steak on the Big Green Egg
Today's Lunch: Hamburger
I think Andrew should permanently take over the cooking in this household :-)

12.8.09 On the Second Day of Christmas

My true love gave to me . . .

an attic ladder.  Not exacting thrilling, but we needed a new one nonetheless.  Technically we need two, but hey, at least we have one!

It looks like Prancer had too much eggnog after partying with Santa this afternoon.

12.7.09 The 12 Days of DIY

One the 1st Day of Christmas my true love (aka Drew-Drew) did for me---a new kitty door to the room.

So, Andrew and I have not been sleeping well these past few nights.  We have been woken up frequently.  Yes, I know.  We have a little baby, but don't go blaming my little darling.  Tama and Sophie The Princess of the Paw-Paws are disrupting our sleep.  In the above picture, that is the door that leads from our bedroom to the hot tub room.  (Yes, I love the hot-tub but is is not in operating condition).  Anyway, the hot-tub room is also known as the kitty suite--tile floors for easy clean-up (Tama also has bladder issues), automatic litter box, kitty condo, 3 walls of windows, etc.  You get the picture.  At 3am or 4 am or 5 am Tama feels the need to meow a Texas-style yowl to be let into her suite.  It is 30 degrees out so of course within 30 minutes she meows, scratches, and shakes the door to be let in.  It sounds like someone is trying to break into the house.  If we ignore her, the yowling goes on for over an hour.  Andrew had been meaning to put in a kitty door for a while now but other things had taken priority until today.  Thanks for the kitty door Andrew!  As for Sophie, well, she has started the barking again--she is in her crate in the "sound-proof "media room all the say on the other side of our house.  She is starting to bark earlier and earlier.  So first it is Tama and then Sophie.  Ack!

12.5.09 The Pink Glove Dance

For everyone who has battled breast cancer and everyone who knows/knew someone with breast cancer (or any other cancer for that matter).   I especially like the dancing janitor!

http://www.youtube.com/watch?v=OEdVfyt-mLw

I know that some of you have seen this video and asked if I worked at Providence Medical Center.  While this is not the hospital that I worked at while living in Portland, OR (they had no pediatric unit) they are a fabulous hospital who are known for their great patient care and their great treatment of nurses.  In fact, they paid a $6/hr shift differential for night shifters.  This was unheard of until my hospital (Doernbecher Children's Hospital at OHSU) followed the trend because they were losing nurses to Providence.


Side Note: UT needs 2 more points to beat the Corn Huskers.

Baby Yoga & Dancing To Your Own Beat

CNN Features : Dance Class a Gift for Special Students

http://www.cnn.com/2009/LIVING/12/04/special.dance/index.html

A dance instructor in Boston offers a class for teens with DS.  He has been teaching the class for 8 years now.  To see a clip of what the dance class looks like, click on above link.

Baby Yoga:

My furbabies feel the need to help Ellie do her developmental therapy.  Here is Sophie demonstrating Upward Facing Dog.

Here is Amelie helping Ellie roll over.

12.4.09 Sleep or Lack of It

First, I would like to wish my Mom a very happy birthday.

It seems that Andrew and I are both sleep deprived.  Is it from Ellie?  Or is it from Tama meowing to get into the hot tub room?  Or is it from Sophie barking while in her crate?  Or is it from the neighbor's blaring clock radio that he leaves on for over an hour (this neighbor also plays wind instruments at all hours)? I vote for all of these above.

Yesterday I called Sophie by the name of Rodeo, our previous dog.  I then called Ellie Sophie.  After that I called Amelie by the name of Emily.  We do not have or ever had an Emily in our household. Of I do realize that Amelie is the French version of Emily so I technically didn't call her by the wrong name.

Last night I went to a Mother's Night Out.  I was standing next to Jessica who has a little girl named Grace.  I then referred to my child as Grace.  Oh goodness.  I do know who my child is and that her name is Ellie.  It is just that sometimes the wrong name pops out.

It is not just me.  Andrew is always saying "I put her in the crate" when referring to Ellie.  Stop!  Do not call Child Protective Services.  We do not crate our child.  He meant the crib.  Sophie goes in the crate.  Although it would be kind of funny if he swaddled Ellie and placed her in the crate--it is a safe & warm environment.
Today's photos are in loving memory of our puppy Rodeo.

12.3.09 Heaven's Very Special Child

I would like to thank Papa Charles for bringing this poem to our attention.  Edna Massimilla wrote this poem back in 1981 and it was published in today's issue of the Dallas Morning News.  Edna Massimilla has a child with DS.

Heaven's Very Special Child

A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above -
"This special child will need much love.
"Her progress may be very slow,
"Accomplishment she may not show,
"And she'll require extra care
"From all the folks she meets down there.
"She may not run or laugh or play,
"Her thoughts may seem quite far away.
"So many times she will be labeled
" 'different,' 'helpless' and 'disabled'.
"So, let's be careful where she's sent.
"We want her life to be content.
"Please, Lord, find the parents who
"Will do a special job for you.
"They will not realize right away
"The leading role they are asked to play.
"But with this child sent from above
"Comes stronger faith, and richer love.
"And soon they'll know the privilege given
"In caring for their gift from heaven.
"Their precious charge, so meek and mild
"Is heaven's very special child."

-- Edna Massimilla