The Spin-a-Thon Results

What another exhilarating event!  The Spin-a-Thon, once again, held that same power that it's held for the past three years. (That's how long I've been involved with it.)  It's amazing to walk into that gym and see all the bicycles, the lights down low, the "rock concert" feel.  Music is loud, energy is high!  That energy comes from all of the spinners who are super excited to be participating in the event. . .and it's just. . .amazing!

During the Spin-a-Thon, one of the spinners who was on stage kept saying, "This is something that's bigger than we are."  And it is.  I remember one year going down the Blue Ridge Parkway.  I was alone, but I kept stopping at the different viewpoints, looking at the expanse of mountain ahead of me.  I kept thinking how tiny I felt.  I definitely viewed something that was much bigger than I was. . .am.  And oh, did His Majesty and His Beauty show.  Spin-a-Thon?  Same thing.  

I've probably said it before, but the majority of the people in that room had no connection to a special needs child.  They didn't work with them; didn't have a family member with special needs.  But they were there--spinning their hearts out!  They JUMP on the chance to be there, too!  And all of those who sponsored were the same way!  Without a hesitation, they said YES!  It's that positive, heart-felt vibe that permeated that room!  

Fundraising for the Spin-a-Thon was so exciting!  Our goal was $2,000.  With a lot of shouting out to friends and families and even strangers, we raised over $4,100!!  It was amazing to see who was supporting Lily and her little friends!  People I never expected gave!  That's powerful, my friends!

And here's the power in it:  I believe that Jesus' sacrifice was more than a saving of our sins.  It was a way to show us the power of sacrifice.  Now, I don't expect you'll find us up on that cross any time soon, but we have our own crosses that we bear.  Lots of them.  And I'm not so sure it's supposed to be about our own crosses, for our neighbors have lots of those crosses, too.  And those are the ones I think we're supposed to be concerned with.  And that's where our sacrifices (money, time, commitment, etc) come in.  We are supposed to make sacrifices for those in need, those who have crosses that are much larger than our own.  We see Jesus doing that throughout His life before even going to the cross. Personally, I believe that people who have special needs have some pretty large crosses.  If you donated to the Spin-a-Thon--heck, if you donated to or did something for ANY charity or anyone in need--, you made a sacrifice.  Think of it this way:  that $20 that you gave, could have bought you a blouse instead.  That $50?  It could have taken your family out to eat.  Did you give more?  You could have done something pretty nice with that money.  But all who gave were willing to sacrifice something else for a small school in Charleston that serves special needs children.  And many who gave have not even met Lily or any of the other children who attend Pattisons!  And that is pretty powerful to me.  And I thank you for it!

Overall, the Spin-a-Thon raised over $273,000!  More than $50,000 over last year!  That money goes to support the summer camp, and anything left over goes to the school.  Wow!  So exciting!

So yes, if you donated, thank you so much!  You helped make the Spin-a-Thon a successful event--one that would not have been so successful without your help!  We send lots of love your way!

Here's a picture of the gym before the Spin-a-Thon began.

Here's a picture of the whole family during the rock concert. . .I mean, Spin-a-Thon.

Lily getting on the bicycle to ride around the gym.

Now that's more like it!

Lots of love Trisomy 18-style goes out from Lily to all who donated
and all who participated in Pattison's Spin-a-Thon!
We could not have done it without you!

It's Magical

This is Sarah, not Lily.  But every time I watch this video, I can't help but think, "This could be Lily."  I think this because it's just the way that Pattison's is.  It's magical.  And if you don't believe me, watch this video.

This is Lily.  Her teacher sent this video to me just the other day.  When Lily began going to Pattison's in September, she was crawling.  Slowly.  She now crawls much faster. . .with a purpose.  Just the other night, she was playing with a ball.  As it got away from her, she would crawl around the room to get it.

That's the best example, but so much more is going on.  The other day, she took a sip of water from a cup and swallowed it!  She transfers objects from hand to hand.  She cruises the couch with assistance.  She purposefully reaches for objects that she's dropped.

That's the magic of Pattison's.  Because before September, Lily was not doing these things.  Every day she gets stronger, more aware.  It's like they wave a magic wand, and POOF! there's another area of improvement.

What's even better is that it's not just Lily who is affected.  There are 31 other children with severe disabilities who attend Pattison's.  They, too, get the magic.  It's so beautiful!

On Saturday, Pattison's will have its annual spin-a-thon.  The spin-a-thon raises money for both their summer camp and the school.  Some friends of mine (and Rani and Autumn) and I will be spinning for this fundraiser.  Our goal is to raise $2000.  We are 98% there!  If you have been inspired by Lily's story, won't you please consider donating?  Donations are tax deductible, and obviously, they go to a good cause.

Donations can be made at www.firstgiving.com/fundraiser/brenda-reagan/pedal-4-pattisons-2014.  That's our team's page.  We thank you, in advance, for considering!  So does Lily.  Here's a picture that was taken at school.  Isn't she so beautiful!  Oh, and happy!  She really LOVES her school!

Just a quick update

Lily is doing well and loving school!  I just cannot express how great it is that she is there.  I don't think I posted this, but there was one day when I was leaving the school, and a few of the teachers/therapists were packing bake-sale items in a car.  As one of the teachers was leaving, she told yelled out to the others, "I love you."  REALLY!  I've never seen a group with such a great relationship.  And the principal is such a great leader.  He has worked so hard for Lily to be at the school and is definitely her fighter!

Already, this school has recommended that Lily see an orthopedist (which she already does), has gotten her "pringle" inserts for her SMO's, and is helping us decide if we want to go with a stroller or a wheelchair.  Currently, we have a wheelchair on loan, and I have to say that Lily looks great in it!  Her posture is so much better in it than in what we have--a feeder seat that sits in a bigger umbrella-type stroller.

Lily is now less than a pound away from hitting the big 3.0., which is a big deal for us since she seemed to hover around 20 for so long.  She's getting so tall, too!  She's crawling faster and getting so strong!

As for the orthopedist mentioned above, it seems that Lily has a little kyphosis.  We've known this, but it didn't seem to be an issue when she was first seen for it.  Well, it has become an issue, so Lily will be getting a soft brace to wear when she is mobile.  She's been measured and cast for it, but we haven't gotten it yet.  From what I've seen of another child's soft brace, this brace really isn't soft.  Hopefully, though, it won't inhibit Lily's crawling.  I'm telling you, she's a mover!

Time to go.  I have a little one here who decided she'd rather play with Mommy than with Lily's shoes.

A Perfect Fit

Lily is fitting right in at Pattison's!  She loves it, and they love her.  What a good feeling!  It's not that we disliked anyone at her old school, but there was always this feeling that they had to take her--which they did, by law.  If she wasn't there, the better for them.  (That was the overall feeling.  Lily loved and was loved, especially by her aide.  Like I said, there was just this feeling.)

Lily started school on a Wednesday in September.  It was just a half day for her because the principal wanted us to meet with the teacher and Lily's team of therapists and explain her care.  So she began at 11.  Thursday was also a half day.  This time, Lily went home early because she was sick.  She missed on Friday.  How nice it was to get a call TWICE that weekend from both her teacher and the nurse, wondering how Lily was doing!  After that Friday, it's been full time, every day!  She's a toughie, though.  She's staying awake, working hard, and charming everyone there.

When I go to pick her up, there's usually someone playing with her.   A few days ago, she was sitting in her stroller, kicking one of the faculty, and laughing as she was kicking!  Lily is usually more of a social laugher, so it was heartwarming to see her laughing while playing.  Then yesterday, when I picked her up, she was sitting in another person's lap.  This girl was a student OT, and she went on about how precious and happy Lily is.  Then she said. . .are you ready for this?. . .that Lily was so SMART!  Can you imagine my surprise to hear that?  I mean, we hear lots of positive things about Lily, but "smart" is not one of those words that we hear. 

This is the right place for Lily.  She is so happy there.  I still can't believe that she got in.  I'm excited to see what the year holds for her.  We've seen quite the improvement already!  She's wanted.  And that makes such a big difference!

Lily's First Day

Lily started school on Wednesday, but she didn't go a full day. The principal wanted me to meet with the team and discuss Lily's care with them. We didn't meet until 11, so no full day on Wednesday. That night, she started sneezing/coughing, and by that morning, I was waiting for the vomit to start. She went to school on Thursday, but we all understood that she might not make it the whole day. She didn't. I ended up having to pick Lily up around 11 and made an appointment for her. Turns out, she had a small bout of pneumonia. There were a few rough days, but she's pretty much back to normal--just a little leftover cough--, having a good time playing and kicking her feet around. She had a follow up appointment on Monday, so it's looking as if her full first day won't be until Tuesday.

And even though it wasn't Lily's first full day, it looks as if she had a ball!

Great News!

I have great news to share!  I've known about it for about a month, but I didn't want to put it out in public until it was solidified.  

Drum roll, please!

LILY HAS BEEN ACCEPTED INTO PATTISON'S!!!!!

I got the call about a month ago and was totally surprised.  I mean, I had been told that Lily couldn't start until Kindergarten, next year.  I even questioned the principal about it, and he assured me that she could attend.  I got off the phone and shared the news with Gabriel (who was also excited about it), and not five minutes later, got a call back telling me that I was right.  Lily was not eligible.  HOWEVER. . .she could possibly get in under a visual impairment.  Did she have a visual impairment?  Well, her early intervention/service coordination was with The School for the Deaf and Blind.  Still, we had to get her doctor to send in proof.  Come to find out, Lily is legally blind.  (That's a term I had not heard regarding Lily and her vision.)  As it appears, these things take time, but she will start NEXT WEEK!

I'm so excited!  Camp was one thing, but school?!  This is such a big deal for her!  She's going to be surrounded by a great group of teachers and therapists and equipment that are for children like her.  She's going to have the structure of an all-day program, which I'm sure will wear her out, but I've got my fingers crossed that it will help with her sleeping patterns as well.  And I am hoping for great strides!

Not that she hasn't had any.  My, she has grown. . .and grown.  She's gained about six pounds in the past few months and gotten taller.  She's pretty much graduated from 2T into 3T, even though I do keep trying to squeeze her in to some of those 2T sizes.  And the growth developmentally!  She is still crawling, but now she is crawling with purpose.  She crawls to get to toys and to get to where we are.  She has even begun exploring, crawling to other rooms in the house on her own.  She's crawled to the hall bathroom a few times in the past week!  Not so sure what she expects to find in there.  We have two new kittens, and she interacts with them, petting them when they are brave enough to get near her.  She uses the potty in the morning--numbers 1 and 2--and would probably use the potty more often if I took the time to sit her on it more often.  More recently, she has begun switching hands when playing with toys--something I wasn't sure she would ever do.  She plays hide and seek by putting her arm over her eyes, and Thursday, she waved goodbye to two of her therapists during two different sessions.  Whew!

So, next week.  No promises here because I'm obviously not very good at keeping up with this blog, but I will definitely try to share what her first week was like.  

In other news, please say a special prayer for Lily's little friend, Rebekah.  She is in the hospital with bowel obstruction problems.  Poor baby!

Camp Begins on Monday!

Monday will be Lily's first day of camp at Pattison's.  I can't wait to see what she will be doing for the next three weeks!  She'll be busy, busy, busy, and I'm sure she will come home exhausted.  Again I feel the need to say a big THANK YOU to everyone who donated during the spin-a-thon, but I know that some donations came in specifically for Lily outside of the spin-a-thon, and for that we are grateful, too.  When there are so many charities and needs out there, it is quite humbling to know that there are people out there who choose to donate to Pattison's and to help Lily during camp.  How can I say Thank You enough?

I can't.

Lily is doing well.  Believe it or not, she has progressed from pee-peeing in the potty to also pooping!  Last week, she pooped five out of seven days!  Usually it's in the morning, but there are a few days when she's also gone later in the afternoon.  We don't have a schedule; I just sit her on the little potty after she wakes up in the morning and throughout the day.  I wish I could say that there were no dirty/wet diapers, but we still have plenty of those.  But hey, if we're saving a blow-out, that's good enough for me!

Lily went swimming the other day.  She and her daddy played in the pool, and really I'm not sure who had the better experience, Lily or Dave, but it was so precious watching her play and enjoy the water.  She tried the back float and kicked her feet and just had a ball!  Hopefully, we'll have more chances to get her in the water this summer.  

Crawling is progressing.  Lily is stopping to rest less, and she's crawling for purpose.  She has a pink ball that she loves to play with, and when it moves out of her reach, she goes to it.  Lily's PT is using that same pink ball to get Lily to cruise along the couch.  (Whoa!  Now I have to worry about Lily when I leave the room!  She was the one I could trust would be ok if I had to go to another room.  Now I have to make sure she's not pulling up on the furniture (she's not done it from the floor alone yet, but she sure does try!).  Her balance isn't very good, and I'm afraid what would happen if she were to fall over.)

Talking about purpose. . .the little stinker sits in her high chair and plays with toys.  I'm not sure if she's dropping them on purpose, but she's certainly looking at them when they're on the floor and reaching toward them.  Unfortunately for her, they are out of reach, but if she could reach them, she would get them.  

Hopefully, I'll be able to get pictures of Lily while she's at camp.  Using my phone as a camera makes that a little harder.  I wonder if the counselors will be able to take pictures if they have a phone with that capability.  If so, I'll certainly share!  And I'll try to devote some time toward sharing what Lily did during camp.