Thursday, April 16, 2015

There's No Stopping This Girl!

There is so much I could say, but I'll let the video do it for me...


I am so grateful for how hard the teachers at Pattison's have worked with Lily. The speed at which she has progressed this year has been mind-boggling!  When Lily walked up to me, right after I stopped the video, she was right in front of me. Usually, if she were that close to me, she would put her arms around me.  Not this time. She held on to those handles as tight as she could!  That tells me that she understands what could happen if she let go. And around 1:22 in the video, if you watch her, you'll see that she slightly loses her balance but quickly corrects herself.  Wow!

Speaking of Pattison's, the spin-a-thon went very well!  They raised over $278,000!  Our team raised $3500 and a second team was formed by ladies of our church, and they raised $2030!  Not bad for newbies!  When I see what this school has done for Lily, and I know that summer camp will be an extension of that, I know that the money raised is definitely going to a good cause!  

It seems that today Lily got to job shadow. Just kidding. But she did spend some time with Ms. Christy in the office.  I've always said that Lily should be a yoga teacher, but maybe secretary is more like it.  She's a natural!



Looking at the picture, can you even tell that she has hearing aids?  Besides being able to tell that she hears better, we're seeing a difference in Lily's balance.  Not sure if it's a coincidence, but before Lily got the hearing aids, when she tipped in her walker, she wasn't able to correct herself.  It wasn't until after the hearing aids that her teacher was able to not have to hold on to Lily in some way while she was in the walker.

I'm telling you.  She never ceases to amaze me.



Monday, March 2, 2015

Up to Something Again!

She's gone and done it again!

Once again, Lily has defied our expectations.  There are so many things that have always dangled in front of us, teasing us as to whether or not Lily would be able to do such things.  And there are so many things that we've been able to check off of that list that's dangled in front of us because Lily has been able to do way more than we expected.

I'm sharing two videos.  One, I have finally caught Lily pulling herself up into a standing position.  The other, of Lily brushing her teeth.  (OK, so she's not really brushing her teeth, but it surely looks like it.  She does, however, hold the toothbrush and move it in a back and forth motion.  It's still a big deal because FINALLY, she's opening her mouth to allow the brush in. . .and that's just as big of a deal as her brushing her own teeth is.)

Lily has had some extraordinary therapists since she was a baby.  Every single one of them has helped her grow and strengthen and develop into this incredible little girl who's defying our expectations.  But all of this development that we're seeing her do now--walking using a walker and gait trainer, riding a tricycle by herself, pulling into a standing position--those could not have been done without Pattison's.

You may say, "Yeah, but she'd be at another school, getting therapy services there."  Sure.  But the equipment, the comprehensive care, the developmentally appropriate material--those little "extras" probably wouldn't be at another school in our area.  Pattison's is our Dream Academy!

So is their summer camp.

And that is why, this Saturday, I will be riding once again in their Spin-a-Thon.  It is why I've enlisted Rani and Autumn and my friends, Allison C., Alison C., Heidi D., Jana I., and Julie W. to be on our spinning team.  It is why I secured a second bike and asked other ladies of my church to join us and to fundraise with us.

It is because I Believe.  I believe in the power that school has to help my little girl reach unimaginable heights.  I believe in the love that school has for their students.  I believe in the experiences they know these children deserve to have, despite their disabilities.

We spin this Saturday.  Our goal, as in the past, is to be in the top ten of teams.  So far, we are in tenth place, but the eleventh place team is tied with us, so we've got some work ahead of us during the next few days.

We'd love to have your support.  It doesn't have to be much.  I fully believe that a lot of people giving a little bit can go a long way.  Your support--sure, it will help us get into the top ten--more importantly, though, it will provide four weeks of summer camp, four weeks of daily therapy, four weeks of exposure to arts and crafts and music and extracurricular activities.  That's four weeks extra that these kids get over the regular school year to get stronger and four weeks where they won't lose so much that has already been gained.  And for our kids, that's important!

If you would like to support us, you can find our First Giving page at http://www.firstgiving.com/fundraiser/brenda-reagan/pedal-4-pattisons-2015.  We are grateful for any amount.  And if you aren't able to give at this time, no worries.  Prayers are just as important, and we'll definitely take as many of those as we can get!

I leave you with a few videos and a picture.  

video
Lily's "brushing" her teeth!


I finally caught her!  Sneaky thing!  We've walked into the
room a few times, and there she is standing!  But this is
the first time I was able to get her on video.  We're in 
trouble now!

Look who got glasses!  Already we can see a difference.  The other night,
there was a block under the chair Lily was at.  She was on all fours, and she
put her head on the floor to look under the chair and reached under it to
grab the block.  We've never seen her do that!  I love checking off her
accomplishments!  I can't wait to see if the hearing aids help!

Wednesday, January 28, 2015

A Late Update

Wow!  How exciting the past few months have been with Lily!

She has gotten so strong and more aware!  About a month ago, I was sitting on the floor, running Lily's formula through her pump, paying no attention to her at the moment.  She was about five feet away and crawled toward the chair I was sitting beside.  I looked up and over at Lily, AND SHE WAS STANDING RIGHT BESIDE ME!!  She had pulled herself into a standing position!  I did a double take!  Unfortunately, she's not done it again, even though I've tried coaxing her multiple times, but I'm confident she'll do it again. . .and continue doing it!

At school, she walks on a treadmill a few days a week.  I'm not sure exactly what type of position she's in, but the other day, I got this text:  "She went 9 minutes straight with Shauna just a few prompts at the hips and holding her hands to keep them on the bars.  The most we've ever gotten is 6 minutes."  That text was followed by "Your girl is getting stronger and smarter every day!!"  Ah. . .music to my ears!  I asked if they used a harness and was told that they don't usually use the harness with her.  Her therapist usually holds her at her hips.

Another amazing thing Lily has done can be seen in the video below.  The first we've seen!  I'm sure there's more to come!

video

As for medical, Lily had an ABR (hearing test) and an MRI last Friday.  The MRI was to establish a baseline for her spine.  Both procedures required sedation, so we opted to have them both done at the same time because we weren't sure how Lily would do with the sedation since she's not always come out of it so easily.  I'm happy to say that she did quite well with the sedation, considering.

I've gotten the results of the MRI, but only through Lily's online records.  What that means is that it was in the radiologist's notes, so it might as well have been in a foreign language.  I'm willing to wait on those results until we see the orthopedist.  No big deal.

As for the ABR, Lily has mild to moderate hearing loss in one ear and moderate loss in the other.  That means she'll be getting hearing aids.  I'm a little concerned, but also excited.  I'm not sure how Lily will respond to them, but I'm hopeful that they will open up a world of possibilities.

Lily has a little cold, but she's in great spirits--very active and happy, as always.

I leave you with a few pictures from the past few months.

And a warning that the Spin-a-Thon will be soon.  You know what that means!  Fundraising!

Lily and Andrew "the gingerbread man", a teacher at Pattison's, the day
 of their Christmas party.

This is the night Lily stood by herself and how she looked. . .minus Dave.

Merry Christmas!

Lily and Aria--Christmas at Grandmama's

Soleil and Aria walking with Lily at Pattison's Christmas Party.
Actually, I think Aria was "helping" Lily by trying to push her.