Friday, January 20, 2012

6 Month Update

Wow, six months since my last post? Just a little ridiculous, huh?

Darsie has been up to so much since then, but mainly starting first grade! It has definitely had its trials and tribulations but I think we are finally in a good spot and progressing well. Her last report card had ups and downs but the main items were that she is reading and doing math AT grade level. So, BIG CELEBRATION!

We recently had a consultation at Shriner's in Portland. Just as we thought, it was recommended that Darsie have surgery on her foot. Botox isn't really doing enough for her at this point and we want to get her foot corrected before more permanent damage is done. She was also casted for a new AFO. She has a hinged DAFO but the Orthopedist at Shriner's thinks she needs more support that an AFO will offer. We go back in February for a day-long appointment with their Motion Lab, Orthotics, Speech, Physical Therapy, and Occupational Therapy Departments. Whew! It makes me tired to even type that out!

We have recently started the process in matching Darsie with a service dog through We think she would benefit greatly from it, especially after talking to lots of other Hemi parents. We had to submit basically an application request application in order to complete a full application. Earlier this week, we received that full application so we are putting it all together to move forward further in the process!

We were hit pretty hard with an epic historical storm this week. Darsie loved the snow and sledding. She is quite the daredevil.


Tina Kewy said...

Hey Shannon,
I've been following your blog for a few years now. I have 6 year old twins, one of them has mild CP (diplegia with mix tone, low tone from the waist up and high tone from the waist down).

We have a service dog and she has helped heaps!!
My son also has some behavioral issues like SID and autistic tendencies and the dog has helped with those too. I say go for it!

However the thing that has helped John the most physically is swimming. He's been on a special team since he was 3 and I think that was the key that helped with the tightness in his legs and the floppiness in his upper body the most.

Many hugs
Tina from Greece

Shannon said...

Tina, that is fantastic! Darsie has done some therapeutic swimming but never for long stretches of time frames. I'll have to look back into it, though. Thank you for the recommendation!

Swistle said...

It's so good to see you! I miss you when you're not around!

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Unknown said...

Hi have been reading your blog for sometime I am a young woman with cerebral palsy who blogs about my own life with it the thought of getting a service dog is something that really appeals to me but I would like to see more updates on your progress as I start to do my own research into this for myself
my blog can be found at
ps I don't know why it shows up as unknown

darcey said...

i am very new to blogs... in fact i don't even have my own yet.... i don't know why i didn't think to search this earlier, but i just found your blog and i have very little time to read back all the way to the beginning... but
i have a 1 year old (well actually twins) one with mild CP we think... and with very little resources i thought today to search blogs...looking for other parents that might have more info. suggestions than dr.s do. i want to read back and find out more about all of Darsie's milestones etc, i would also love to e-mail you with some questions... cant figure out how to though... my email is

Michael J. said...

Hi Shannon,

My husband and I are both physical therapists and I just happened upon your blog. Funny, my husband is now going to embrace our blog on our website which he has put aside for oh, more than I year I believe, so 6 months isn't so bad! ;)

I don't know much about blog etiquette so I won't say much here except that we developed a pediatric elbow splint specifically with children who have CP in mind called The Bamboo Brace. There is a lot I can write about but instead just feel free to look it up at or or just google it. You can also check out another mom's blog at and search The Bamboo Brace to see what she has to say.

I read a lot of your posts about Darsie (we have a 1st grader as well). If her arm is affected and you think our brace would help we’d be happy to send you one free of charge to try. If you feel others could benefit from our brace, please help spread the word. We want to see as many kids improve their function as possible.

Please feel free to email me with any questions (via our Contact Us page on our website or our Facebook page below). Sorry, I know this is super brief but I don't see an email contact for you on your blog.

jenny said...

Oh my goodness sharon she has grown so much good luck with everything

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Rebeca Faur said...

She is so cute !!

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