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!

Another Hospital Visit

On Monday, Soleil was diagnosed with RSV.  All day, I was trying to prep myself internally with dealing with it, not in Soleil (who actually had a mild case), but in Lily and Aria.  I just knew the roller coaster ride was about to begin.

I was right.

Lily started getting sick either Tuesday or Wednesday.  Days blur when you're lacking sleep.  The vomiting was back, the coughing had begun, and you could just tell that, overall, Lily didn't feel good.

By Friday morning, Lily's cough sounded horrible and she winced when she coughed.  She also was crying on and off for the good part of the early morning.  I took her temperature, and she had a slight fever of 98.7.  I gave her some Ibuprofen, just hoping to help her feel better.

By 11:45 or so, things had gotten drastically worse.  I was about to feed Lily and noticed she had chill bumps.  A diaper change and a few other "housekeeping" procedures with her, and she was shaking.  Aria was screaming, so I put Lily in her chair, covered her up, and fed Aria.  While I was feeding her, I noticed Lily was breathing really heavily.  After feeding Aria, I took Lily's temperature again.  I watched as the thermometer shot up into the 100s so quickly and continued going, finally stopping at 105.7!

Needless to say, after taking it again with another thermometer just to make sure the oringinal thermometer wasn't defective, we rushed to the ER.

In essence:  Lily has bacterial walking pneumonia and RSV.  She spent last night in the hospital, where they wanted to keep an eye on her due to her medical fragility, but it looks as if she might be able to go home today if she responds well to her breathing treatment.

Dave stayed with her last night, but I'm with her today.  She's sleeping, but it seems restless.  She's on oxygen, and occasionally, she dips down.  Luckily, she pops right back up.  Her fever is gone.  Thank goodness!  

And now the therapist is here for the breathing treatment.

Grace Shining Down

Oh, how I've missed blogging!  Lately, there has been so little time, but today I sacrifice cleaning my house (while all three girls nap) after rearranging to make room for the Christmas tree, so I can share a story of Grace shining down from one person to another.

Lily had to have her blood drawn today at the hospital.  I had both Aria and Lily in a double stroller, and the elevators were much slower than usual.  (I like to do things quickly at the hospital to avoid paying as much of the garage parking fees as I can.)  Only two of the four elevators at our wing were running, and every time they came to our floor, they were packed.  I'm not kidding when I say that it took the elevator five stops to my floor before we could get on.  I was quite aggravated and ready to find admin to complain.  

When we got into the blood drawing room, I was pleased to see that my favorite tech was there.  She's always so  nice and gentle with Lily, and that means so much to me.  Lily rarely makes a peep when this lady draws her blood.  This was the case today, as well.  After the tech stuck Lily, I complimented her on her work and told her how much I appreciate her.  She told me that every morning she prays and asks God to work through her hands so that she might be gentle and not hurt her patients.  I told her that He was definitely doing that and that she was such a blessing to us and told her how the last time we were there, the tech wasn't so gentle and Lily was quite upset.

When we were leaving, I asked her and the other tech if there was a different group of elevators that I could take and explained to them how I had to wait so long for the other elevators.  They told me no, but Lily's tech made a shhh sign with her finger and waved me to go with her.  She took me to the staff elevator and then told me how to get back to my car, but she misunderstood what floor I needed.  When the elevator got there, and she realized I needed a different floor, she decided to go with me so she could point the way.  

She was so friendly and such a blessing, and I could definitely feel God's presence living in her.  I walked to my car, elated that I got a chance to have such an encounter!  

I thought about the whole situation:  how I was aggravated with the elevators and then how wonderful this tech was with Lily and how helpful she was to me.  I thought about how I go through life with aggravations, but had I not been aggravated, I would not have had the chance to experience God working in someone else and His love shining through to others like me.  It was inspiring and uplifting, and my heart has been singing a song all day long.

If you are the parent or caregiver of a child with a diagnosis of Trisomy 18 or 13. . .

. . .please consider taking this survey.  This is for a graduate student at the University of South Carolina.  The survey shouldn't take more than 10 minutes to complete, but I bet it'll take you even less than that.

http://www.surveymonkey.com/s/socialmediatri13or18

 

Thanks for helping!

Sitting Up Like a Big Girl

Here's a video of Lily getting into a crawling position and going from there into a sitting position.   Today, Lily's PT said that Lily has accomplish mobility.  What a wonderful thing to hear!!!

Development

Before Lily turned three, she received services from The School for the Deaf and Blind.  Lily is neither deaf, nor blind, but she has small nerves in her eyes, and that qualified her for those services.  We received the equivalent of early intervention and orientation and mobility services.  Once Lily turned three, her services with TSFTDB ended.  Miss Alisha, her orientation and mobility therapist, told me how she saw, numerous times, how children's development basically exploded at the age of three.  With Lily, we never know what's going to happen with her development, so I just sat back and hoped that Miss Alisha's words were somehow prophetic for Lily.

Lily will be 3 1/2 next month, and I can joyously say that Miss Alisha's words ring true for Lily.  The development we've seen since Lily has turned three is truly amazing.  

• We're noticing a HUGE interest in toys.  Lily is reaching for items that we put on the floor and reaching out when she's in her gait trainer.  It's almost like she can't wait to get her hands on whatever item she's interested in.  She's also picking toys that she's dropped back up.  This is so important because we now have something to motivate Lily with.  Motivation will help her with walking or crawling.)
• Speaking of toys, I often give Lily a choice between two items.  Lily reaches for the toy she wants to play with.  You might say that she's just reaching, but the other day, I gave Lily a choice of two toys, and she didn't reach out.  She shook her head "no."  I found two other toys, and she reached out for the one she wanted.
• Lily's posture is improving, and her ability to sit for an extended period of time keeps getting longer.  She plays with toys with both hands while in a sitting position.  One of her favorite toys is a blue ball.  She likes to try to bounce it, and when we roll it to her, she tries to catch it.  Her reflexes are a little slow, but sometimes, she does stop it with both hands.  I think playing with this ball has really improved her sitting stamina and her posture.  She's definitely motivated to sit up and play with it.
• Lily is now able to put herself in a crawling position, hold it for at least five seconds (if not more), and rock in that position.  Today, her PT said she wouldn't be surprised if Lily began crawling.  This is so exciting to watch!  And the great thing about it is that she is practicing her moves--sometimes putting herself in this position ten or so times within a 15 minute time period!
• From the crawling position, Lily is able to put herself in a sitting position.  She's still at the point where she's sitting on her legs instead of moving her legs into a cross-legged position, but we're working on that one.  Last night, she kept practicing by going down on the floor and lifting up into sitting.
• Lily has what we call a Cleopatra sit.  She extends on one side and looks like Cleo sitting on a chaise lounge.  We've been working with Lily, trying to get her in a sitting position from her Cleo sit.  She's not 100% there, but her angle is a whole lot better than it's ever been.  The way this girl works, I'll say she'll probably be there in the next few weeks.
• Lily's enjoying new tastes.  We've been experimenting with different flavors of yogurt.  She's even enjoyed some chocolate pudding, and last night, she tried ice cream.  While she's nowhere near sustaining herself, just that she's allowing these new flavors is big.  So not like the Lily we've seen in the past. 

It's so amazing to watch all of this occur.  As always, it's on her own terms.  She's doing this stuff while she's sitting on the floor, when we're not sitting by her.  It's as if we've (and by that, I mainly mean her therapists, but since we reinforce what the therapists are doing, I'm including us) given her the tools, and she's creating the masterpiece.  It's spectacular because I know we (Dave and I) could do more.  We don't set aside a certain number of minutes per day to do therapy.  Her therapy comes in the form of play and transitions (like taking steps from her feeding chair to her pillow) and during diaper changes.  She gets time in the gait trainer, and we play with her while she's in a standing position.  But she's the one rolling on the floor, putting herself in that crawling position, making herself sit up, practicing.  My word, she has such an internal drive to learn these new skills!  I look forward to seeing what the next half of her three years brings.