The Story of Grace

Lily has been extubated!  Now she's fighting the full-face bi-pap mask and withdrawal from some of her meds.  This is just as hard to watch.

We've come a long way.  The nurses keep saying how she looks like a different child from Monday when she was admitted.

I think she won this one.

But others have not been so fortunate.

One night when Dave was here, I got this text:

They lost a little one up here tonight. . .

And we have lost so many little Trisomy 18 babies lately. 

Oh, how my heart breaks for these families.

Yet I sit here, and I am looking at my little girl. . .

. . .and she is still here! 

Dave's text later said

Made me think about the "Angel of Death"

walking around up here.  

Don't know why I had that thought.

But I took comfort in knowing that he/she

laid her hand on Lily and said,

"Not just yet."

Not.  Just.  Yet.

I have no idea why Lily's life was spared and so many others' lives were not.  None of it makes sense.  None of it seems fair.

It's not.

I cannot help but feel that in that sparing, we have a responsibility.  I imagine that Angel of Death looking at us, her hand on Lily's little head, peacefully saying, "Not just yet.  Go live her story."

And boy, is it a story I love to live!

It's a story of life and love.  Hope and faith.  Courage.  And strength.  And growth.  A story of laughter...and tears...and worry.  And fight.

It is the story of Grace. The story of our Lily Grace.

A Series of Fortunate Events

I'm going to take a trip back to about two, maybe three, weeks ago because I'm still trying to make sense of it all.

I had finally found our stethoscope.  The one I usually use on Lily when she isn't feeling so well.  It was outside because, well, we usually keep it in the costume container so the kids can play doctor, and I guess someone must have taken it outside.  When I brought it in and tried it out, it wasn't working.

So I asked Rani if she had one. . .since she's now a dental hygienist.  {Yeah!}  She did, and she told me she would bring it the next time she came to the house.

When she brought it, it was in a bag.  A bigger bag than what I expected.  I went to put it in a safe place (no more costume container), and after I got back, Rani told me that the bag had both a blood pressure cuff and the stethoscope, and I could only have the stethoscope.  So, I got out the bag that I thought was the stethoscope, and put it in the closet.  When I handed Rani the bag, she told me that it was actually in the other bag, so I had to switch bags.  It was quite the ordeal.

(Ok, I'm going to interject here and say that I SWEAR that I looked in one of the bags to verify that the stethoscope was in it because I had gone into that closet A LOT just to get the stethoscope bag in it.  This is important information for later...)

Fast forward to Saturday.  Dave had been working, and all the kids were with me.  Everything went as normal.  When he got home, I went to the store.  I was not gone for more than 30 minutes, but when I got back, Lily vomited.  Weird.  She had been fine all day.  And then she kept vomiting.  Dave thought that she had swallowed something.  We discontinued her formula and gave her water instead.  But she kept vomiting.

I stayed up with her until 1:00 Sunday morning. She was dry heaving by that time, so I assumed she had a stomach virus and went to bed. 

The next morning, when I woke up, she had some dried snot around her nose, so then I thought that maybe she just had a cold and the vomiting was her sensitive gag to sinus drainage.  She also had a fever.

The day went on, and I still believed that she had a cold.  By the time Dave got home and was sitting with her and holding her, he noticed that her breathing was in short, quick breaths, so we got the pulse ox out to measure her oxygen levels and heart rate.  Oxygen was in the 80s (she was snotty and asleep), and her heart rate was in the 180s.  Whoa!  We hadn't seen heart rate levels that high since her bowel obstruction, but I was thinking that she might just be dehydrated!  So I went to get the stethoscope, but the bag that I had put in the closet was the bag with the blood pressure cuff in it! What!?!

So Dave decided to put her in the shower to hopefully open up her airways.

When they got out, he was cuddling with her in bed.  I went up to check on her, and she was breathing so quickly--definitely more than one breath per second.  I put my head on her chest, but really couldn't hear anything.  Then I did a visual assessment of her body and noticed that as she breathed, her stomach stuck out.  Retraction!  (Lily breathes a little differently from our other children, so looking at her lungs/diaphragm area isn't always a good indication.  Luckily, I was looking at her from the side and noticed her stomach.)

We then decided that he would take her to the emergency room.  (Let me also interject that from the time that he got home to right before I noticed her retracting, Dave and I were talking about if we should take her to the ER or not.  It's always one of those things where you just never know.  Sometimes, it's ok to just wait until the next morning to take Lily to the doctor.  When we saw the retraction, we both knew what to do.)

Thank goodness we did not hesitate!  By 6:00 Monday morning, Lily was in the PICU coding and being intubated!

Now here's where the stethoscope comes into the more recent story.  I'll say that I am no professional when it comes to using a stethoscope, but it's pretty obvious when something is going on in the lungs.  The thing is, up until yesterday, LILY'S LUNGS HAVE SOUNDED CLEAR!  The doctors have heard NOTHING in her lungs!  They've seen plenty but heard nothing.

And that is pretty significant. 

Because if I had had that stethoscope, I would not have heard anything in Lily's lungs either.  And if I had not heard anything in her lungs, I might not have looked at her breathing.  I would have blamed it on a hot shower and being warm under the blankets.  And I might not have been adamant about Lily going to the hospital.  I just might have said that we could just wait until the morning to take Lily to the doctor.  And if I had done that, Lily might not be with us today.

The kids taking the stethoscope outside so that it wouldn't work anymore. . .

Me asking Rani for hers. . .

Not putting the right bag--the stethoscope bag--in the closet. . .

Not having a stethoscope to listen to Lily's lungs. . .

Being at an angle where I could see Lily's stomach as she breathed. . .

A series of fortunate events, indeed!

The Walking Dead and the Fight for Life

Lily is in the hospital.  And she is sick.  Three different viruses, sick.  Pneumonia on top of three different viruses, sick.  It was bad.  Real bad. 

But things are getting better.  Slowly.  Her numbers are better, and she's now beginning to breath spontaneously.  On her own.  Above the machine.

She's been ventilated since early Monday morning. 

But she is a fighter.  A Walking Dead fighter.

Yes, Dave and I watch The Walking Dead.  When it was on, I looked forward to watching it.  I think, even though I am grossed out by all of the violence, I am intrigued by the psychology behind it--that of the living.

Think about it.  There are millions of zombies out there and not many survivors.  Luckily, the zombie/survivor ratio isn't all that bad usually. . .until this season. . .but still.

Is there really, realistically, any hope of Rick and his gang ultimately surviving millions of zombies? I don't think so. Yet they hold out hope.  And they fight.  It's just in them to survive.

Every time I watch The Walking Dead and I think about that fight for survival--that inherent fight--I think about Lily and her fight.

She's been fighting since before she was born.  She's been given horrible odds, and yet she fights.

And I am intrigued.

Because here we have a little girl who, according to all the different tests out there, is cognitively around a 9 month old.  Yet here she has this deep-rooted, unstoppable fight for her life.  Even though Dave and I have encouraged her every step of the way to fight, who knows if she's understood it.  Even if she has, I think it's less for us and more for her.  She's doing it because it's a part of her.

We've seen it time and time again:  from her fight to make it to birth, to the fight to take a breath when she stopped breathing. . .three times.  The fight to soar above "failure to thrive."  Conquering the first round of RSV, a bowel obstruction, a diaphragmatic hernia. We see it during therapy, as she strives to push herself past where we thought she'd ever be.

And we saw it when she coded on Monday. . .twice.

We see it on a daily basis. 

Every second of every day, this little girl fights.  And we've said it time and time again:  as long as Lily fights, we will definitely fight for her.

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.

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.  

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!

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!

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.

Ah, Lily

Ah, Lily.  You love to make things interesting.  Not that you can help that.  But life is definitely interesting with you.

I am struggling.  That's the simplest way I can put it.  I am sad and worried and trying so hard to stay positive.

Lily had an orthopedist appointment the other day.  Dave took her.  She goes for scoliosis and kyphosis.  Because of the scoliosis (and I guess the kyphosis, too), Lily has to wear what is called a TLSO--basically, a back brace.  The hope is that the back brace will keep Lily's scoliosis from getting worse.

Unfortunately, it is getting worse.  And that is not a good thing.  According to the doctor, she will need surgery.  I'm not sure exactly when that will happen, but when the doctor told Dave that he doesn't want her in the hospital this winter, it makes me think that he's talking soon.

T-18 mommies are telling me that for her to have surgery at 5 is too early.  A nurse who used to work for this doctor is telling me to trust him--that he's well-known throughout the nation for his work with scoliosis, and he knows what he's doing.  I'm reading/hearing that this surgery will change things.  For instance, this nurse told me that we'd have to pick Lily up differently.  I read online that a child who undergoes this surgery would have to relearn how to get out of bed so as not to damage what was surgically done.  What's going on in my mind with that?  How are we supposed to teach that to Lily?  She's an active little girl!  She's mobile!  She's awake in her crib and pulling up on the railing so that she's on her knees.  How do we keep her stationary--heck, how do we keep her moving in the right way--when we are asleep?  Even when we are awake?

I wish I could say that was the worst of my worries.  I worry about the surgery itself.  This seems to be pretty major surgery to me.  I worry about her life after the surgery.  It will be different.  Will she bounce back?  Will she be in pain?  (I've read that children who receive this surgery experience more pain than older kids.)

I mean, will her personality change?  She's such a happy little girl.  I'm terrified of losing that.  And she's come so far.  I understand having to relearn after surgery, but does she have it in her when life for her now is quite liberating.

Dave reminds me how fortunate we are to have Lily now.  We've had five years we never thought we'd have. I know that.  But that still doesn't change one simple thing.  She's my little girl.  And because of that simple fact, I do not want her to be in pain.  I do not want her to lose her spark.  I do not want to lose her.

She's still a little girl--a kindergartener.  She smiles, she laughs, she plays.  She can't run around, but she moves.  And she knows joy.  Probably better than you or I.  I am just so afraid of losing all of that.

So, I don't ask often--at least, I don't think I do--, but please pray.  Whether it be for healing or our peace, for time or acceptance.  Please pray.

I'll leave you with two videos.  One is from the fair.  We were very close to the fireworks.  This is Lily's reaction.  The other was taken at school.  I believe this is the first time Lily stood up by pushing herself up.