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.

The Essence of Human Existence

The other day in church, our preacher gave this pastoral prayer.  It touched me deeply, because this is how I feel regarding life.  I pray that if anything were to ever happen to anyone dear to me, that these words resonate within my soul.

Gracious God, 

That is the essence of human existence. . .that there is the tragic and there is the glorious.  There are the things that hurt us in life and the things that bring us joy in life.  We are always, it seems to be, tossed from one to the other and find balance-- find simply walking in a straight line--a very difficult thing.  We are slung back and forth from dark to light, from blinding brightness, to a gentle quietness. 

Help us.  

Help us to know that in the midst of all of that, You walk with us.  In those times when we would simply whistle to ourselves as we are walking down the street in a sense of contentedness, You are with us.  In those times when it seems as though we are terribly, terribly alone and we hurt in a way that no one has ever hurt before, still yet, You are with us.  Keep us ever mindful, and may we find the ways of thankfulness because You are with us.  

Not because life is what we want it to be.  

Not because all is well.  But because You are with us and all is right--even in the hardness, all is right--in Your presence. 

That's a hard thing to understand.  

So we ask that You would help us in the groping times to find You and the right.  And in the groping and the hoping and the longing we find that our longing reaches beyond our own needs into the wanting goodness for those others around us and those others in far off places.  

Later this morning we will pray together, "Your Kingdom come on Earth as it exists now in Heaven."  May Your Kingdom begin the coming with us and our willingness to live as Kingdom children.  Remembering and holding dear to all those for whom the kingdom seems very far away.  This we ask in the name of Your Holy and Beloved Son.

Amen 

And Amen.

(Just in case anyone was wondering, I received permission from my preacher to publish this.  He wasn't concerned with me sharing his name.  I would love to give him full credit, but for the sake of Internet safety, I've decided to keep his name off of this blog.)

This Little Girl Is Moving!

On September 19, Lily's teacher sent me this video.

Today, she sent me this one.  Boy, has this little girl come a long way.  Happily so!

Good Results

Just a quick post to say that today's results were good.  Not great, but we'll take good and a "see you in two months."  Numbers were down from a 3 on the stick to a 1+.  Not sure what that means, but the doctor was pleased and showed no concern.  So it looks like no sedation because no biopsy!!  Yeah!!

I'm glad to have the good results, especially since we were at the doctor's office for roughly 4 1/2 hours!  Simply put:  Lily was bagged for a urine sample. She obviously has a strong bladder because I gave her water AND her formula while there, plus, she had already had her morning formula.  We waited.  And waited.  AND WAITED!  Still no. . .um. . .filling of the bag.  Finally, over 4 hours later and 1 million glances at the bag to check and see  if it had been filled, she relieved herself.  ONLY. . .she completely missed the bag!!  Luckily, a small puddle had formed on the bed, and the doctor was able to run the stick through it to get the test results.  

This is how life goes for us.

How do we handle it?

We laugh.  

Lots to be happy about and celebrate.  No use crying over spilled pee milk.  :)

Thank you for all of the prayers!  

Much love!

Things Just Got. . .Interesting

That's what I heard from the nephrologist when I took Lily to her appointment.  It was a routine appointment, just the normal six month checkup.  This, however, was with a new doctor.  I don't know why, but her usual nephrologist quit the practice.

That just may have been a small blessing.

Usually, when we would go see the nephrologist, he would not bag Lily to get a urine sample.  To help make a long story short, let's just say that cathing Lily is very difficult, and catching her urine in a bag can take up to 2 hours.  Usually, he'd ask how she was doing and occasionally order bloodwork.

This time, probably because she was seeing a new doctor, this new doctor ordered her to be bagged for a urine sample.  Bear with me here, but Lily wasn't going to see the new doctor.  She began the session with yet another new doctor but not THE new doctor.

She was bagged, although not for a sterile catch, and we waited.

And then THE new doctor came in.  And that's when she said, "I wasn't going to see Lily today, but things just got. . .interesting."

Apparently, Lily's protein level in her urine was high.  OK. To say high, that's an understatement.  It was HIGH.  Like, off the charts high.  Over 500.  To understand how high this is, the normal amount in a random sample is normally less than 8 mg/dL.  So yes, HIGH.

According to the doctor, this could be something called nephrotic syndrome.  At the time, Lily was sick, so the doctor wants to recheck her tomorrow, since she is now well.  But then, I spoke with Lily's pediatrician, and she said the most she's ever seen it get when a child was sick was in the 30s.

So tomorrow, the recheck.  And if the protein levels are still high, Lily will have to be sedated to have a biopsy on her kidneys, so I'm a little nervous about what tomorrow is going to bring.

On the other hand, I am so thankful.  Had Lily's original nephrologist not left the practice, she probably would not have been bagged, and who knows if bloodwork would have been done.

Another good thing that may come out of this is that if Lily does have to be sedated, we're going to schedule a hearing test to be performed while under.  Lily's ear canals are so small that they can only perform a hearing test that requires sedation.

Which brings me to another blessing.  One of the physical therapists associated with Pattison's asked me if Lily could take part in a research project that she is doing.  It's called SMART, and I can't tell you what that stands for, but I can tell you that it has to do with a person's reaction to external stimuli and what that says about that child's communication.  I am in no way doing this justice with my explanation.  What I know is that Lily smelled and tasted and saw and felt and heard different things, and her reactions were recorded.  Well, we found out that Lily did not perform well on the hearing part.  We knew she couldn't hear well, but exactly how much, we didn't, and still don't, know.  And whether that is an audiology issue or a neurological issue, we don't know.  But if Lily goes for that biopsy, we will find out.

So I'm not hoping that Lily has to have the biopsy because she doesn't do that well coming out of sedation, but if she does, we will finally have a chance to get that hearing test done, and we'll be able to find out for sure how well--or how poorly--Lily can hear.  We'll also find out what's causing these protein levels to be so high.  But I'm not looking forward to that.

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!