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.  

A Big Deal?

Sweet Lily is now four years old!!  I never thought we'd make it to this day, but here we are.  We celebrated her birthday on Saturday with a small party.  Mommy was just too exhausted to put much effort into anything big.  I'm glad it was small, though, because Lily wasn't feeling too well.  She slept most of the time, and when she was awake, she was grumpy.  You know Lily doesn't feel well when she's grumpy because she's such a happy little girl.  But it was a good day with a few friends and family.

OK.  So you are not going to believe me when I say this, and really, in a way, it's not a big deal.  But in a different way, it is a big deal.  Lily pee-peed on the potty this morning!  When I went to change her diaper, it was dry from overnight.  My first thought was that I should sit her on the potty and see what she does, but I was getting her ready to go to school and felt a little rushed.  It kept eating at me, though, that I should give it a try and if she was a few minutes late, no big deal, so I sat her on Soleil's little potty.  She sat there all happy for about 30 seconds, and whoosh!  She pee-peed!  It was a lot, too!  Of course, I praised her!  

Like I said, it's a big deal!  But then again, it isn't.  Had I not taken her, she would have gone in her diaper.  Would she have gone at the same exact time?  Who knows.  Do I think she made a connection between using the bathroom and sitting on the potty?  No.  Probably not.  

What is the big deal is this:  Yes, it's impressive that she did do it, but to me, what's bigger is that "push" that kept telling me to try it.  Call it instinct.  Really, I just "knew" that I needed to put Lily on the potty.  I'm not trying to brag here.  What I'm saying is that I believe in this instinct, and I also believe that this instinct has helped Lily in so many ways--when she's been sick, in doing certain exercises that I had no clue what I was doing, in understanding Lily and her needs, and today, in going potty.  I rely heavily on this instinct, and I believe as a mother of a special needs, nonverbal child, it is essential.  When that "voice" speaks, I definitely listen.

Will I put Lily on the potty again?  Sure!  Why not!  We saved a diaper this morning.  But I'm not talking 30 minutes at a time here.  Just a quick few, especially in the morning if there's a dry diaper.  Who knows.  This may turn into something.  Maybe not.  Either way, it doesn't change who she is. 

Almost Four!

It's hard to believe, but in one week, Lily will be four years old!  And, of course, that makes me stop and realize just how far she has come.  Yesterday, I sat in her IEP meeting for the next school year.  I was so proud of her and her accomplishments.  Honestly, they are quite astounding!  

The teachers and therapists kept saying that she is one of the happiest children that they know.  The PT even said that she sees Lily on Mondays and that always makes her week.  The other therapists agreed.  I beam when my children are happy, but Lily's happiness is special because it shows that she is anything but "incompatible with life."

Lily's speech therapist met me last week when I picked Lily up from school.  She wanted to know how Lily communicated at home.  I gave her as many examples as I could think of, one being that the other day, Lily was sitting beside me on the floor as I was reading.  She reached over and patted me on the arm a few times as if trying to get my attention.  Of course, she got it!  When the therapist heard that, she was amazed!  Lily did the same thing today while I was feeding Aria.

As for school, we are going to try to give Lily three full days and work up to five full days.  This year, she goes two days a week for roughly three hours.  Our goal has always been for Lily to attend school full-time when she turned four.  With an aide in the classroom attending to Lily, that makes our goal much easier.  

And I can say that I believe the improvements that Lily has made this year come partly from the extra that she is getting at school.

Speaking of improvements, this is what Lily is currently doing:

• Choosing toys.  We hold up two and ask her which she wants.  Sometimes, she doesn't choose anything, so we have to get two more toys.  (The fact that she's playing with toys is amazing.  There was a time when they didn't interest her.)
• Recognizing toys.  The other night, Dave held up two toys and asked her to get her slinky.  Lily felt the other toy, then moved her hand over and grabbed her slinky!  She loves that toy!
• Tasting more.  I usually give Lily Aria's leftover baby food to taste.  I'm happy to announce that Lily accepts each "flavor" and takes tastes.  She likes to bite down on the spoon.
• Crawling!!!  OK, so it's her way and a little on the nontraditional side, but she can make her way across the floor at least five feet in less than a minute.  I've seen her take alternating arm forward, leg forward two times in a row, but then she stops and sits up on her feet.  To me, this is amazing because she is able to coordinate a crawling movement, which is not easy.
•  Weight-bearing.  In a crawling position, Lily can lift one arm up off the floor and hold herself in that position with her other arm still on the floor.
• Pre-self-standing.  Lily's OT, and more recently her PT, work with her on trying to get herself up off the floor.  While in a crawling position, they move one of her legs so that her foot is flat on the floor, knee off the floor.  The point is to push up with her arms and legs to a standing position.  Lily's PT has said how you show Lily how to do something and she gets it.  It might take a little while, but she gets it.  Lily now does this on her own--leg up, foot flat, knee off the floor.  She's not strong enough to get into a standing position on her own, but her PT is showing her how to use the couch to help her.  That and the pulling up that she's doing (see below), she may just be able to put herself into a standing position one day!
• Bear stance.  She's only done it once, but Lily put herself in what is called a bear stance.  Basically, think "downward dog" yoga position.  (I told you she could be a yoga instructor!)  She held herself in that position and then collapsed on the floor. 
• Pulling up.  I've only seen her do this twice, but she's gone to our table and to our rocking chair and grabbed and pulled up.  Not into standing, but to where her body looks like a letter L, so she's on her knees, but she's not sitting on them.  Her behind is off the floor and straight with her back.  She does this a lot when she's around us.  Her school PT said that she is building her core, which should help her with her balance, which should also help her with walking.
• Facilitated walking.  I can remember being at our old place and allowing Lily to stand.  She's always loved standing!  So much so that now, when I try to sit her down and she wants to stand, she stiffens her legs and throws her body forward, letting me know that she does not want to sit.  I can remember holding her under her armpits, moving her body so her legs would take their steps, giving her as much support as I could while trying to help her gain strength so she could support herself.  Then that amount of support lessened.  Then I started holding her at her elbows with my fingers extending down her arm.  Then I supported her between her elbows and her wrists.  Tonight, we walked together for about ten minutes where I let her hold my thumbs.  I gave a little support with my fingers, just in case I needed to catch her quickly, but understand that that is such a minimum amount of support!  As a matter of fact, last night, she had a jacket on, and I held her jacket closed tightly around her with one hand and held only one of her hands. . .and she took steps!  The therapists at the IEP meeting told the teacher that she better watch out, Lily may come to school walking next year.  While I'm not sure that will happen, they do realize her drive, saying that she perseveres, and anything is possible with her.

 I'm so amazed by this little girl!  From the beginning, I've wondered what she would do.  I wondered if she would smile.  She did!  And that seemed enough.  Then she would do something else.  And that seemed enough.  And then it grew to more.  And each time, when she would reach what I considered the final boundary, she would push through it and move on to the next.  While in my heart, I know she will walk (because she just has that drive to do so!), my brain tells me to be realistic in that she probably won't.  

But when I speak to Lily, I speak with my heart, and that's what she's listening to.  She never hears a word my brain says.  She knows what I know she can do, and she's trying her best to do it.  If she doesn't, that's no big deal.  I think she's done quite a lot for someone who's had a list of negatives labeling her and her condition.

***I also wanted to share that Rani was recently accepted into the Dental Hygienist program that she applied to!  Because this is Lily's blog, I don't talk much about my other children, but I'm so proud of Rani for the hard work she put into getting in to this program and for being accepted that I just had to share!***

Trisomy Awareness Month

March is Trisomy Awareness Month, and while I've been wanting to spread a little awareness, we've had a rough month.  The beginning of the month brought on a cold for Lily, Soleil, and Aria, and last week the good ole stomach bug decided to invade our house.  First, Soleil.  Then, Lily and I.  I'm praying that it stays away from Dave and Gabriel.  

I wanted to first say a big THANK YOU to anyone who donated to Pattison's.  It was so exciting watching our goal not only be met, but exceeded, knowing that every little bit helps this special cause.  From what I hear, Pattison's goal was $100,000.  They made $228,000!  The Spin-a-Thon was again amazing, and it was extra special being able to ride in it along with Rani and Autumn and some wonderful friends.

March 18 (Trisomy 18 Awareness Day) has come and gone, and I really wish I had had the energy to post something.  I spent that day (besides being sick) thinking about Lily's birth.  I thought about how it was honestly the most beautiful birth I have ever been through, despite the fear and the sadness and the worry.  I thought about how much trust I had put in God.  No, not the selfish trust I wanted to have that I hoped would allow Lily to live, but the trust that no matter what happened to Lily, I would be held in the arms of a loving Savior.  My tears would be wiped away as many times as need be by His gentle, healing hand.  And He would still be good.  I thought about how fragile the uncertainty of her birth actually was.

And then, I thought about Lily today.  How vibrant and joyful and playful and aware she is.  How an outsider might be uncomfortable with her noises or the way she holds her body sometimes or watching her vomit (which seems to be happening less, by the way).  I thought about how normal she is to us.  While I would love for her not to have Trisomy 18, well. . .she does.  There is nothing I can do about it.  With that being said, because of that, I cannot imagine her any different.  And the beauty is that she fits.  She fits into our family just the way she is.  She is no different from Rani or Autumn or Gabriel or Soleil or Aria.  Yet, without her, our dynamics would be different.  We would not be who we are. . .for better or for worse, I might add.  My parents and Dave's parents love her just as much as they do the other grandchildren.  And our friends love her, too.  She is a part of all of us.  And we are a part of her.  I believe Lily is who she is because of that love we have surrounded her with.  

She knows she belongs. 

There are people who disagree or question that statement:  the doctor who sees Trisomy 18 as incompatible with life.  The mother who just received the diagnosis of her unborn child and questions whether or not she could handle losing or even raising a child with special needs.  The general public, those who are concerned with their tax dollars spent on a child who will never contribute to society.

I understand.  I see your point.  But I have this strong belief that Lily, and children like her, are meant to be here.  Whether it is a divine reason or not, these children are here to teach us about our own vulnerabilities, to show us what joy is meant to look like, to move us to help others.  To allow us to love someone who is seemingly inferior to ourselves.  You can't give a medical explanation, nor should you put a monetary amount on any of that.

Yes.  Lily knows she belongs.  She belongs in this family, and she belongs in our world.  She knows that, and she's seeing to it that her reason for being here isn't in vain. We're helping her as much as we can along the way.

What a Wonderful Gift!

I received an email today with a picture that had the following caption:

An incredible day at city hall with the founders, parents, children and teachers of Pattison's Academy and the Pattison's Warriors! Thank you Mayor Riley and City Councilman Mike Seekings, a Pedal 4 Pattison's participant, for proclaiming the month of March to be Pattison's Academy and Pedal 4 Pattison's Month.

We are so blessed...and so appreciative...to be living in a city that supports children with special needs. 

Way to go, Mayor Riley and City Councilman Mike Seekings!

Lily Through the Years

We are less than two weeks away from Pattison's Spin-a-Thon.  We're a little over 40% to our goal of $2000.  If Lily's story has moved you in some way to donate (every little bit gets us closer to our goal AND it's tax deductible), please consider donating to www.firstgiving.com/fundraiser/brenda-reagan/pedalpowersfundraisingpage

Here is a video of Lily through the years.  It shows how much she has changed and progressed!  Lily is such a hard worker, and we have been blessed to have amazing therapists help her get to where she is today!  At this point, she is moving slightly forward in a crawling position!!  Go Lily!!!

Pedal Power 2013

I am thrilled to announce that in March, I (along with seven other incredible ladies) will be spinning with the Pedal Power team in Pattison's Academy's 6th annual spin-a-thon!  Lily's OT invited me last year to be on this year's team, and I. Can't. Wait!!!

Visiting the spin-a-thon last year was an incredible experience (click here to read about it), so it will definitely be an honor to participate this year.  It was even suggested that Lily could ride with me!  How cute will that be!?!?

In just a few days we will find out if Pattison's will be Lily's school or if she will just attend their summer camp.  (Since it's a charter school, admission is based on a lottery drawing.)  If Lily doesn't get into Pattison's, that's ok, but it would be GREAT if she did.  The school she currently goes to is fine, but Pattison's is more suited to her needs.  Therapists are always there, they have more specialized equipment, and they LOVE Lily!!  (Ok, so do her teachers at her current school!)  

So even if Lily doesn't get to attend Pattison's school, my heart is with them and I'll always support them.  I think the concept is incredible!  I love how the school does its best to give special needs children normal experiences.  So I am elated that I get to ride.  But with riding comes fundraising.  Our team's goal is to raise $2000, and if you feel led to help support this wonderful school and summer camp, please visit our team's Firstgiving page and consider donating.  You can easily donate from there.  (Oh, and if you do, please let us know that your doing it because you know Lily.)  Here's the link:

www.firstgiving.com/fundraiser/brenda-reagan/PEDALPOWERSFundraisingPage

And feel free to pass this link on to others that you know--there are Facebook, Twitter, Email, and Share buttons so you can easily do so.  Share Lily's story while you're at it.  Any donations will be gladly appreciated!

As Lily's stamina increases, so does her ability to take more (and better) steps in her gait trainer, to walk assisted with bigger and faster strides, and to push herself into crawling and sitting positions.  Even if it's just summer camp, Pattison's is a place where Lily will get extra exposure to the resources that will help her improve even more.  This family LOVES Pattison's!

Will she crawl?

Once again, it's been a while since I've posted.  We are so busy around here!  It has been such a pleasure watching Aria grow and listening to Soleil as she talks up a storm and getting Gabriel ready for Kindergarten!  And Rani and Autumn are finding out what it's like to be an adult and to have adult decisions to make.  It's nonstop!

And Lily?  Well, Ms. Lily is trying her best to crawl!!!  Just the other day, I was playing with her on the floor, and she kept getting into crawling position (which she does quite easily these days) and sitting up with her feet under her.  I began clapping my hands and trying to get her to come to me, and she'd reach for my hands.  Then I'd clap them on the floor, and she'd get into crawling position and paw at the ground, trying so hard to coordinate her arms and legs to get her moving.  Dave came in the room, so I had him take my place, so I could get behind Lily and help her move her legs. Before I could start, though, Lily would look back at me and then make herself move so that she was facing me instead of Dave!  She turned herself completely around to play with me!  Later in our play, Dave put his hand under Lily's chest while she was in crawling position and just gave her support.  That was what she needed because with that support, she was able to move her legs as if she were crawling.  (She can move her arms, it's just the shifting in weight that is difficult for her.)

And get this:  It's not easy for her to do, but today, she finally inched each leg forward!  We've never seen her do that before on her own!

I sit on the floor and play with Lily, and we have such a good time.  We play, and something rings in my heart where I JUST KNOW she's going to crawl.  I don't know if it's a mother's intuition or if it's hope or what, but I really believe this girl can do it!

Ha!  Can you imagine?  A two year old running around and Aria crawling all over the place. . .then keeping up with Lily, too!  Oh, yes!  I will definitely have my hands full!  

Bring it on!