Just Like Daddy

I believe that Ellie has inherited Andrew's DIY interests.

Ellie has a taste for sophisticated reading material

Going to put her to work.

Crazy Hair!

Acting Sassy

Best Buds

Happy 14 Months Ellie!!!

Can you hear me? What?

In March, I discovered that I was having to shout to my little darling to get her to hear me.  Occasionally, that did not work either.  Children with DS tend to have hearing problems due to the anatomy of their ear (think narrow, really narrow ear canals) or auditory nerve problems.  Ellie Bear passed her newborn screen so I knew that she could hear at one point.  She does/did however had tiny little ear canals and a lot of wax.   Ellie right ear canal was so tiny that no one, not even the ear, nose, & throat [ENT] specialist could see her ear drum with their tiny specialized speculum and lumiview otoscope.

Anyway, we were already being followed by Dr. Z in ENT and when I realized that Ellie wasn't hearing so well, they got us in right away.  This is what Dr. Z found.  (I knew I should have gotten a new battery for my otoscope!)

Pus!  Lots of yucky pus behind the ear drum , thus making it rather difficult of Ellie to hear.  Chronic pus just hanging out back there :-(  My poor baby!!!!

Then we got the ear tubes.  Special ear tubes--the titanium bobbin PETs because the other ones wouldn't fit down the ear canal.   These things are fabulous as they allow the nasty pus to drain out of the ear drum and out of the canal.  Improved hearing and decreased pain!  Ta da!  The downside is the bobbin tubes tend to fall our after only 6 months.  

We made it 8 months.  Ear tubes are out.  Ear drums look perfect.  Ear canals have grown enough that Dr. Z can easily visualize the ear drum.  The down side, our flight to St. Louis for Christmas will probably bother her ears.

Beautiful.

Anyway, we are not officially discharged out of ENT.  We probably never will be, but now we just get to follow up to make sure her hearing is good, the wax is cleared out, and she doesn't end up with recurrent/chronic fluid behind the ear drum.

ENT photos courtesy of www.entusa.com

Now for some fun Ellie pictures.  Pay attention to Sophie's face.

"Come on!  Throw it already!"

"Is she ever going to throw that bone?"

Crawling to the camera.

"Yes!  I finally got my bone back!"

That is my daughter, being goofy.  Oh and attacked by the Tickle Monster!

Blanket Patrol.  Removing all of the blankets from her crib through the slats.

Cruise Baby Cruise

Ellie is slowly, but surely getting the hang of cruising.  For a little over a month, Bellie Bear has been cruising in a straight line for only a couple of steps at a time with lots of coaxing.  Now she is cruising in a straight line with multiple steps at a time and she may not even need a toy for motivation.  Go Elles Belles!!!!

Ellie Walks the Line

For the past 2 weeks, we (by "we" I mean Ellie with me acting as cheerleader, toy manipulator, and baby bootcamp drill seargant) have been working on cruising around corners and weight shifting.  Weight shifting helps her to cruise, but it also helps her to transfer between two surfaces such as the couch and the coffee table or between the couch and the chair.  This is where the squats and one-legged stands came into play.

Weight Shifting Between Two Surfaces

Andrew and I  had to drastically rearrange our furniture to give Ellie these opportunities to practice.

The coffee table is so close to the couch and chair that us big people can barely walk around. 

There is still some Ellie-proofing that needs to occur.  For instance, Bear-Bear just removed on of the outlet covers from the outlet.   How she accomplished it, I do not know for I can barely get those suckers out.  For the record, it was the off-white Safety First ones she removed (and then tried to stick back in-Eek!)

Ellie, Future Electrician
Practicing the Fine Motor Skills

She also believes that the foam corner pads are for teething.

Nom Nom Nom

Ellie has apparently acquired yet another skill. . . pole dancing.  

Tomorrow we are off for our 3 month ENT follow-up.  I would be shocked if 1. Ellie didn't have cerumen impaction (enough wax to create a candle) or 2. the ear tubes were still intact.

Miss Sassy Pants

My husband said "Some people wear their hearts on their sleeves while others wear it on their butt".  Well said Andrew.

Old Navy had a sale on tights.  A 2 for $10 so of course I bought 2 pairs.  I open them up to wash them and nearly had an accident when I saw the heart on the bottom of the tights!  You know it looks cute on Ellie's diapered butt, yet the day when I wear a large heart or star or whatever on my hiney. . . well, let us not go there.

If only my Christmas photo shots would come our like this.  Happy Bear!

Going Public

We are going public!

Andrew and I have kept our blog private and by invitation only for so long because we were so afraid of our privacy being violated.  Yes, it is the internet and therefore nothing is private, but we felt better knowing that people had to enter a little password just to access the Ellie Bear blog.  Okay, I changed the name from Our Family to Ellie Bear.  It is after all a website mostly about the Bear-Bear.

I have been spending a large amount of time immersing myself into other people's blogs who too have children with special needs such as Kelle Hampton's Enjoying The Small Things, Deedah & Me, and Daddythefatty.  Reading their blogs have helped me to feel less alone.  I got to thinking, scary I know, that perhaps other people would feel the same way about my blog.  Maybe?  Possibly?

Additionally, I know that many of you are wary of the internet (as is completely understandable--see 1st paragraph) and have not been reading my wonderful, witty entries :-P because it requires a google account.    Not to mention, our darling Ellie is so beautiful and wonderful that she should be shared with everyone!

Rubber Ducky

Just after receiving Ellie's diagnosis, I met with VP & Social Coordinator of DSACT.  She told me that it was very important to expose Ellie to all sorts of textures as children with Down syndrome can have sensory processing issues, texture aversions, and food aversions.

Obviously I immediately went home and had Ellie experience tummy-time on all sorts of surfaces--fleece blankets, carpet, the crib mattress, the wool rug, and the hardwood floor.  Later on I introduced her to all types of foods--smooth, soft, chunky, warm, cold, room-temp, etc.  Aside from our oatmeal incident, Ellie does well with food.  Our PT Cindy had me start Ellie's day using a baby brush on her limbs working my up her legs and up her arms for "sensory reasons".

One thing we have never gotten past. . . bath-time.  Back when I first starting learning sign language, there was a song:

Turn on the hot.
Turn on the cold.
Water in the bath-tub.
Water in the bath-tub.

Turn on the hot.
Turn on the cold.
Bath-time is so much fun.

Yeah, well, I hate to break it to Monta Z. Birant of the Sign, Sing, & Play Kit (2006), bath time IS NOT, positively NOT so much fun.  It is horrible.

Here is Ellie just a few weeks old.  Already she hates the bath.  This was just sponge bathing at the time. Piercing screams.  So horrible that Andrew could not be in the house during bath-time.  I was told that in time it would get better.  And it did.  For only a few months.  

I started by sticking this plastic infant monstrosity into the bathtub while I showered.  Of course I sang & signed the bath song during the whole thing.  She actually wouldn't scream.  I thought "Here we go.  She likes showers".

Then is all started over again.  She wanted out the infant tub.  I tried filling the regular bathtub with water.  Nope.  Tried sitting her on the bottom of the tub while I showered.  Nope.  Tried holding her while I showered.  A little better for a few weeks.


One would think she didn't like water.

Proof that it isn't all water.

For months we have tried different approaches at the suggestion of ECI.  I have lined the bottom of the tub with towels so she has "grip".  I have tried sponge baths in the big bath tub.  I have tried filling the tub with water.  I have experimented with temperatures.  Then we tried putting her in the laundry basket in the bathtub so that she felt more secure.  Nope.

When we went to Philly, I thought that things would go pretty smoothly because Megan has a stall shower.  I could just sit Ellie on the floor while I showered.  Nope.  Loud screaming that could be heard in New Jersey & Delaware.

I was beginning to despair and ready to put Andrew on bath duty.  Then I saw the ducky bathtub at Target.  It is inflatable sort of like her pool toy.

As with all other experiments, I got her used to the tub outside of the bathroom.

Here she is getting used to the tub without water in it.  She still has her diaper on so it isn't a "real bath" in Ellie Bellie's eyes. 

At last, I thought, success!!!  Look at how happy she is!  She played in the bath.  Splashed around.  Got wet.  Didn't scream or crack her head open.  This went great for 1.5 weeks.  A record.  I became so excited that I emailed Jan of ECI to tell her that something finally worked.  WorkED.  Past tense.

She hates bath-time.  The ducky doesn't work anymore.  Tried it without the water.   Tried it with the water.  We have better luck if Sophie is in the bathroom.  The diaper comes off and she is crawling out the bathroom at lightening speed.  Here she is attempting to escape the tub and screaming in the process.

Here, bath-time is down and she is fine. 

HELP!

Outer Bear

Remember how in the previous post I mentioned working with Ellie on putting the objects in the container?

Here are some pictures of our progress. . .

Looks great, right?  She is actually removing the objects from the hole in the lid.

Here she has discovered that she can remove the lid.

And then dump objects all over the floor.