Tuesday, March 29, 2011

Elsie's Story- Part 5

I came across a wonderful quote today that I had to share.

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that she is exactly the person she is supposed to be. And that, if you’re lucky, she just might be the teacher who turns you into the person you are supposed to be.”
-The Water Giver 

I love it.
So perfect.
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If you have missed them, here is part 1, part 2, part 3 and part 4.

So where I last left off, Elsie had started using her walker.
What a blessing that was for her to be able to get around and feel like a normal(ish) kid.
Here is a post I did a little after she had been using her walker.
Walking around with her walker really helped strengthen her muscles in her legs.

Repost- May 24, 2008

Elsie is doing great with her walker, and we can already tell a difference in her strength she has in her legs. This is just a cute little video of Brent playing with Elsie and getting her to walk from couch to couch. This is the most she has ever walked...so that is really great! I love how she has to rub Dads newly shaved head for good luck...she gets a little mad a few times when he forgets to let her do it! What a cutie!
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 Here is what I posted just after her 2 year birthday.

Repost August 1, 2008
Elsie went today for her yearly check-up. She has made such huge leaps since last year. But before I get into all that, here are her stats:

2 Years old
weight- 21 lbs (3% Huge, I know...)
height- 32 1/2 inches (15%)
head circumference- 45 cm (5% itty bitty tiny head)
The new big things Elsie has been working on:
*She is learning better every day how to maneuver around corners and doorways with her pediatric walker.
*She has learned to crawl up and down the stairs. I knew the day would come...but it makes me so nervous.
*Her Physical Therapist has taught her how to put her stool in front of the couch so she can crawl up onto the couch, and then how to slide back down. That has been a fun one for her to learn.
*She has been coming along really good with her speech.
*She is imitating more words that we say, and knows all the signs to communicate with us daily.
*Her favorite words to say right now are bath, pizza, elbow, and her all time favorite DA DA!
*She is very eager when she wakes up to go and say HI to everyone!
*You ask her where the little baby is and she will point to my tummy and then make the sign for baby. So cute!
*She is trying really hard to learn to hold her spoon and fork so she can feed herself. She is doing a great job. She loves doing stuff that makes her feel big!
She is still the happiest little thing in the world.
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She also went on to get foot braces for her feet to help hold them flat on the ground instead of up on her tippy toes.

Repost- Sept. 10, 2008

Elsie got some more 'Helpers' today. She had her feet molded last week, and her braces got finished today. What are these for??? Well, hopefully they will make things easier for Elsie to walk. Elsie has flat feet, which wouldn't usually be a problem if she didn't have her muscle tone issues. Her feet were beginning to 'fan' out. It is hard to explain, but it was doing not good things for her feet, and eventually her knees and hips would be out of whack. These will also help her from 'toe walking'. The Achilles tendon gets really tight, forcing many kids with Cerebral Palsy to walk on their toes. She doesn't do it a lot, but has been doing it more and more, so this should help reduce that also.
I was worried about getting these because I thought it would mess up the progress she has made...but so far, so good. She loves them! She loves the sound they make when they hit the ground. I think she can tell that they are helping in her balance too. Anyway, we are supposed to put them on for a few hours more and more each day until she is wearing them all day. We just have to make sure they aren't rubbing her in any weird ways. We will have to get her some bigger, lots bigger sized shoes to fit over these, but it isn't necessary for her to wear shoes on them all the time.
Anyway, doesn't she look cute in them!


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Things were going good, she continued to make progress, she kept her big smiles and patient attitude.
She had Physical Therapy once a week, Speech Therapy once a week, and Occupational Therapy once a week.
She was getting all the help possible, and she was doing good.
She even got to participate in a Tumble Time class for developmentally challenged kids.
She LOVED that!!!
I guess in the back of my head I had made myself a goal for her to walk by the age of three.
As we got closer to that time, I started to see maybe that was not going to happen.
Yes, she was doing so good, but I think this was the time I started to 'grieve' her diagnosis.
I hadn't done that yet....and really, I thought I was fine with it.
But when I started to see all the kids her age doing things she could not even begin to do....I realized I was having a hard time.
When she was younger and a baby, there seemed to be less of a gap between her and her peers.
And I guess I felt that the gap seemed to be getting bigger as she got older and I didn't want her to be left behind.
But, my little Elsie didn't care.
Elsie loved life and she loved doing the things she COULD do.
And she would find alternate ways to play like her friends did.
The day she turned 3, I found it to be very difficult.
I don't think I shared it with very many people.
I love Elsie with all my heart and I just wanted life to be easier for her.
It took me a while to get it in my head that Elsie is exactly how she is supposed to be.
She is perfect in every way.
PERFECT!
Shortly after she turned 3, guess what she did???
She started walking.

Repost- July 2009
She's got it!!!
Today she has been walking everywhere.
 Just now, putting her to bed, she walked from Madi's room to the bathroom where we brushed her teeth, then she walked from the bathroom to her room!!!
She is doing so good!!!
It's really gonna happen!
Elsie's gonna walk!!!

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She never ceases to amaze us.
Over the last year and a half Elsie had learned to get into a standing position on her own (without holding onto something), she has started school (and loves it), gotten glasses, upgraded her foot braces, her speech has become so much better, got rid of her walker, and run.
And the girl loves to run!
There are so many other milestones that Elsie continues to hit....she really is so amazing and such an example to us all.
Very rarely does she complain.
And when she can't do something her friends want to do, she just figures out a different way to do it.
I think our biggest issue right now is communication.
It is still hard to know what she is saying a lot of the time.
And some days are better than others.
Her mouth muscles get tight at the same time her body gets tight....which usually goes along with illness or weather changes.
But we do what we can and we get by.
I love my Elsie bug and for the spirit and light she brings to our family.
Thanks for reading Elsie's story.
I would love to answer any questions you might have.
I hope you enjoyed getting to know Elsie....and she would more than love to be your friend!

7 comments:

Kristi said...

She is adorable! And so strong! What a kid!
I have a question: Will there be any long-term obstacles? She is progressing so well, but are there other health issues that come up with age?

Kim said...

That's a great question Kristi.
CP is so different in all cases. It is hard to know exactly what will happen in the future. There seems to be a lot of hip joint issues in adults with CP. And I think her knees might have issues. Not sure if it is a joint issue, or because she falls so much still.
I am sure she will continue with PT for a long time to come and work on things such as stairs and maybe some day be able to jump.
I do wonder if she may need to start using a cane of sorts when she goes to school full time. I don't know if she can recover as well in a hall way full of kids. We will see.
So basically, time will tell. We are kinda clueless what the future will bring. But I know that Elsie will give it her best to do what ever it is she needs to do!

Kim said...
This comment has been removed by the author.
Emily Peterson said...

It's so inspiring to see the progress that she has made! How I love that little girl!! That first picture you posted of her is precious!!

The Holdaway Family said...

She is such a ray of sunshine in everyone life who meets her! We love our Elsie Rose!

Joe and Brea said...

Kim, Elsie is amazing. She inspires me to go for my dreams. If she can do it, we all can do it.

Emily said...

Hi- I went to high school with your sister Stephanie (and Emily). She pointed me towards your blog a few months ago when she found out that I have a child with some similar issues while reading my blog. I read a few passages early on, was impressed, then forgot to go back.
I just read all five parts of Elsie's story. Thanks for posting it. That quote on part five made me cry all morning, it's so sweet and so spot on, I ordered the book today after finding out my library doesn't have a copy.
Elinor (my daughter) is 18 months, not walking, not crawling, not talking (too much). It took me to get to 15 months to be concerned enough to intervene. I was getting the same kind of stuff from our doctor ("she's behind, but not TOO behind, let's wait and see"). At 15 months he gave me the number of kids on the move after I pushed a little and immediately, they knew something other then simple delays were at work with little Elle. She is behind in all areas, not just gross and fine motor skills. She is cognitively behind as well (which scares me more then the others).
Anyway, I won't get into it all, but she has an appointment with Primary Children's genetic department on April 12th, and with Neurology in June (if she needs it after Genetics). Most symptoms point to a neurological problem (she rocks when she's excited and pulls her hands up and fists them at the shoulders, and is mildly behind on the left side, and has sensory issues).
We had an easy baby phase, unlike Elsie, she has always been very very content since birth and is also the happiest little thing I've ever met. She never complains and makes everyone fall for her. I know that she will take her challenges in this life with a good attitude and inspire many- life Elsie is doing and will continue to do.
Anyway, I just wanted to thank you for sharing your story (and that quote) it is really inspiring and I wish Elsie the best and I plan on keeping up with her story.