Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Friday, December 08, 2006

Low Tone

I hate low tone!! Low tone is what makes so much so difficult for our babies. Low tone is what is making Emerson fall further and further behind. When you hold her she just feels a bit flimsier than certainly other babies her age, but also younger babies. I was discussing with her OT ways to combate low tone and current research in the field. Right now there are very exciting studies on new ways to treat hypertonia. Increased tone usually presents itself with rigidity and spastic muscle movements. New ways such as using electrical impulses and pharmacological approaches are currently being tested. However, neither of us could find any new research for treating low tone. Definitely, more needs to be done in this area.

Besides a bad cold that is making both of my girls miserable, Emerson is doing well. She seems to be close to crawling, but I have been saying that for 2 months now. She is getting up on her hands and knees and rocking for a split second before crashing down. We just increased her PT to hopefully keep this progressing. Her PT told me to focus on working her trunk rotation to increase her lateral stomach muscles needed for crawling. She is so funny when she works with the PT, she cries and complains the entire time, very dramatically putting her forehead into her hands to complain. Then, when the PT picks her up she instantly stops complaining and looks at her with her big blue eyes and coos as if to say, "I really just like to be held and snuggle, don't make me work!!" Emerson is not babbling yet, which I am really trying not to take personally being an SLP. ;) She does have various grunts that can communicate a whole lot. Without looking at her I know if her graham cracker just fell and is beyond reach or if the dog stole it. Two totally different grunts of frustration. She is getting more and more expressive every day. She is also loving her johnny jumper and can clap whenever I say, "clap, clap, clap".

Emerson saw her Nephrologist last week. Nothing new came out of the appointment besides the fact that she has high blood pressure which we already knew. We are going back in two weeks to possibly have a CT done of her kidneys and she will likely go on blood pressure medication.

We are getting so excited for Christmas. Ella has been almost beside herself. She has been telling me that she wants a train and a bike for Christmas. I am not sure where she came up with that.
I am trying to convince her that what she really wants are paints and doll house toys since that is what she is getting. Wish me luck with this one. Here is a picture of the girls watching their first Christmas TV special. Think they liked it? Have a good week everyone!!

5 Comments:

Blogger Nancy said...

What a precious picture! :)

Keep working to fight the low tone. It does get better. We got a giant exercise ball, and we worked on Erik's trunk that way.

Nance

11:36 AM  
Blogger Lisa said...

Emerson and Tatum are doing alot of the same stuff...I am working on the clap thing :) These girls crack me up :)

1:10 PM  
Blogger Aspen said...

Oh the low tone! Yes, I too hate it! I remember picking Daven up thinking he was just a limp noodle. Sigh. He is slowly getting stronger and stronger.

I love the picture of the girls! Precious moments!

3:13 PM  
Blogger Kerry said...

Low tone, ugh! Brady does the same thing with his PT - she calls it playing possum. Cry cry cry,then when she picks him up he pretends to be asleep. Very adorable!

Love the pic of the girls! So intense - was it the Heat Miser? :)

6:00 PM  
Blogger Kati said...

What a perfect picture of the girls!!!!!!! I love them! :)))))

The low tone.... this is a main problem, but beleive it gets better and better... I remember when Szabi couldn't sit alone, he always leant back so suddenly... Emerson gets stronger and stronger every day!!!!

Love, Kati

5:36 AM  

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