Saturday, December 15, 2012

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.


Tuesday, December 4, 2012

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.

Friday, November 9, 2012

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.



 

Thanks for helping!

Friday, October 19, 2012

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!!!


Friday, October 5, 2012

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. 

Sunday, September 16, 2012

Welcome to This World Baby. . .

The plan was to be induced on Friday.  I was to be there at 7 in the morning.  It's not that I wanted to be induced, but it certainly did make things easier since my mom would be here to watch the kids.

Thursday night, Dave and I stayed up a little later than I wanted to, but we wanted to get everything finalized on this end.  Around 1:30, we headed to bed.  I had a little trouble sleeping due, I'm sure, to pre-delivery jitters, but I probably dozed off for maybe a good twenty minutes when, at 2:30, I heard Soleil crying.  I got her out of bed and went into the living room to rock her for a while.  When I sat down, a contraction started that gave me a slight pain in my back.  We rocked for a while, but then Lily started fussing, so I put Soleil back in bed and went and got Lily.  When I sat in the rocking chair with her, I got another contraction.  After rocking her for a little while, I put her back in bed and went back to bed.

But I had trouble sleeping.  These contractions were different from the ones I'd been having.  I pulled up the contraction tracker app on my phone and set it into motion each time I had a contraction.  They weren't regular, and they were pretty far apart, so I felt no need to worry or wake Dave.  With these contractions, though, sleeping was out of the question. 

Around 3:30, Soleil woke again.  Again, I was out of bed in the rocking chair, having a contraction.  This time, the tracker was going.  And again, Lily woke up.  When I got her out of bed, I noticed her oxygen making a wet sound, so I turned on the light and saw that snot was pooling around her cannula and out of her nose.  I cleaned her up, took her oxygen off, and cuddled her.  My mom was awake by that time, and she was helping me with Lily.  And by that time, the contractions were roughly 3 to 5 minutes apart.  I suctioned out Lily's nose and decided to wake up Dave.  (Let me add here that I was doing a lot of walking through the house, and it seemed like every time I got up to walk around, I would have a contraction.)

By 4:30, we were headed to the hospital.  (I found out yesterday that Dave was saying a prayer, hoping that we would make it because the car we took was acting funny.  So funny, that it broke down the next day.)  Nevermind the induction.

When we got to the hospital, I was 8 cm dilated and begging for an epidural.  (I am the biggest baby when it comes to pain.)  Luckily, I was able to get one, and once things settled down, I was able to relax and rest a bit, which I needed since I hadn't had much sleep since 8:30 Thursday morning.

At 8:19, we welcomed Aria Hope into this world, quite the surprise because we were thinking she was going to be a boy (not due to an ultrasound but more because of what others were saying and our own "gut" feeling).  Weighing at 8 pounds, 1 ounce, she is my biggest baby yet, but she is such a tiny little thing.  She carries on the nature name I have chosen for all of my girls for "Aria" is Italian for "air."  But there is a musical component in her name, too, for nature is a symphony, and I love that.

We are home, and she is well, and she is loved.




 

Friday, August 17, 2012

When Words Try to Hurt

WARNING!  Please do not go back and respond to the comments I'm going to post about.  Please respect my wishes for Lily's blog to not be a warzone of hateful words between one another.  I am merely making this post to share the process I went through and how healing occurred from it, to share that because it is a beautiful feeling.

For the past two days, I have been bombarded by some pretty seething comments regarding my "Hateful Words" post.  While I don't like these comments, I have to say that I respect each and every person's right to have such comments.  This is a blog.  It is a public forum, I must accept that everyone does not hold the same opinion that I have, and that is why I have chosen not to delete what Anonymous (all but one of them) has said.

What these Anonymous commenters don't understand is that their words didn't hurt me that much.  I'm sure they wanted them to, but they didn't.  It was more the situation.  Sure, I wanted to reply back with some biting, sarcastic remark, but I just finished reading a book about Desmond Tutu, and I highly value the way that he handled conflict and epitomizes the ubuntu philosophy where "A person is a person through other persons" and that person knows that "he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are" (No Future Without Forgiveness, by Desmond Tutu).  I have admired this philosophy for years and have struggled to cultivate it within myself since learning about it.  Perhaps it is through encounters such as this where my greatest cultivation occurs.

Here was my biggest problem.  I felt misunderstood.  I know.  I know.  I shouldn't worry about that, but as a writer, I strive for clarity.  These people posting these comments just didn't get it.  And that bothered me.  I wanted to respond to tell them that they got it all wrong.  But you see, their words seemed hateful to me, and I knew my responses would sound the same.  I thought about Martin Luther King Jr.'s quote "Hate cannot drive out hate; only love can do that," and so I tried to think of nice things I could say.  Kill them with kindness, my mom would say.  Still, I struggled.  Dave suggested that I just keep quiet, but the problem is that I cannot keep words inside of me.  Honestly, I don't like to write, but I need to write!  Keeping it inside of me is a dagger that won't stop twisting.

So a struggle ensued.  This was not so much about them and me as it was about me against myself.  If I didn't really want to respond hatefully, and I couldn't respond silently, and the kind words weren't there, what was I to do?  Could I really not get in touch with that peaceful place and respond appropriately?  What was my inability to respond with kind words saying about my beliefs as a Christian?  Why could I not respond in a way I know Tutu would respond?  (Silly thought, I know.)

I'm sure the negative posters delighted in my struggle.  They are probably sitting back right now, in self-congratulatory mode, thinking that they have won.  What they don't know is that they won't win because I embrace struggles and recognize them as a chance to grow.  Currently, I am reading Aleph by Paulo Coelho (perhaps by the grace of God I am reading this book), and just last night I read this:  "What hurts us is what heals us."  Exactly!  Those seven simple words gave me renewed strength, and my fight began.

The problem then became "how do I allow this healing?" because I still had the problem of keeping silent.  Part of my plan became that instead of giving them my negative energy, I would give someone well-deserving my positive energy.  A few Sundays ago, in church, a little eight-year-old girl was sitting in the pews a few rows ahead of us.  Towards the end of the service, she looked back at Lily, and she had the most endearing, the purest, look.  It was full of compassion and there was not one single sense of disability in her eyes.  It was all I could do not to cry.  I complimented her to her mother, which was very meaningful to her mother.  I had been meaning to email her mom and praise the little girl again, but never did.  This little girl's look held my hope these past few days, so I resolved to email her mom and explain the situation and praise the little girl even more.  That resolve was step one, and I emailed the mom this morning.

Step two involved trying a few things.  I tried crying my frustration out.  There are times when crying is very cathartic for me, but this was not one of those times.  I tried washing those words away with a nice, hot shower.  This pregnancy leaves my skin itchy, and showers help.  That's about all that shower helped, though it did give me the idea for step three.  And, of course, I did try praying.  Let's just say that I know my prayer life desperately needs to improve.  Unfortunately, none of those worked single-handedly, but I do give credit and say that they all helped get me there.

I still needed step three.  Music.  Somewhere around midnight, I went to my keyboard. . .and stayed there until about 1:20.  Oh how many problems have been forgotten and solved by sitting alone at the piano or guitar!  And I have now added to that list.

I went to bed, able to sleep, and woke up this morning feeling quite refreshed.  I tried thinking about those posts, but my mind just wouldn't let me do it.  Another post came in, and I just laughed when I read it.  None of those words went to my heart, and I didn't feel the need to respond (except I did want to make one correction, but I didn't, and I was amazed at the 54-year-old who made the comment because I think of the maturity the 54-year-olds I know have that this person could use).

And here's the last thing:  the other day, I was listing to Beth Moore on the radio, one of her Quick Word broadcasts.  I believe she was talking about her daughter, but she may have been talking about one of her listeners.  She was talking about criticism, and she basically said that you have to know yourself to handle criticism.  You have to know when to accept it and you have to know when it's not right.  What these commenters don't understand is that there may be areas where I feel insignificant and insecure, but where they hit me, well, those are my most secure areas!  In trying to be hurtful, they were only helpful because they allowed me to do a little self-searching and realize that therein is where my strengths lie.  I AM a good mother, I AM a good person, I stand firmly behind my decision to allow Lily to experience life and will defend that decision to the end, and I am NOT perfect.  (Never claimed to be.)  All of us are children of God, and that includes Lily, and not all people believe this.  They don't have to.  But Lily doesn't know that.  What she knows is that there are plenty of people out there who love her, and that's all she needs to know.    So in a way, I thank these readers for their comments.  In my opinion, they weren't nice, but their words made me stronger and only confirmed that "what hurts us is what heals us."

Aaaaahhhhh. 

AGAIN, I cannot express how much it means to me that you not go back and make comments regarding those comments.  I am healed and today is a beautiful day, and I hope that you can find it in your heart to not give these people any of your energy, but to find a way to heal and grow from their words instead.  Besides, I do not need any affirmations, and That.  Feels.  Good!

Wednesday, August 1, 2012

Post Surgery

Lily had her surgery for her diaphragmatic hernia yesterday.  All is pretty well.  She's had a few episodes of pain, but medication has helped with that.  She's also vomited a few times, but I'm hoping it's just a post-op thing.  She slept well last night, but her pulse ox kept going off.  That was a little frustrating for a few reasons.  (1) It might mean that Lily needs to go back on oxygen--although that could be the medicines causing that, and (2) it meant that I got very little sleep.  I've already taken a nap this morning!

There are four little bandaids dotting Lily's abdominal area, small incisions where they went in to fix the hernia.  No big, long scar like the bowel obstruction left!  The doctors heard a little upper respiratory congestion, so I believe they're going to have a respiratory therapist come in and do a little therapy with Lily.  I don't know if that means they'll keep her another night or not.  They anticipated that she would be in for one night, but now I'm wondering if they'll make it another. 

I've got a few more pictures to share of Lily in her final two weeks at Pattison's.  She really had a good time, as I think you'll see from the pictures.  And I don't think I ever posted about this, but Lily was chosen Prom Princess (along with one other camper)!!!!

Speaking of Pattison's, one of our local magazines is having a contest to choose a nonprofit to receive their Giving Back Award.  They are currently in the semifinal round, and Pattison's has made it to that round!  If you have a moment to spare, please vote for Pattison's by going to

http://www.charlestonmag.com/givingback/votenow

It's an easy way to vote.  Just choose Pattison's from the drop-down list of nonprofits, give your email address, and then choose whether or not you want Charleston Magazine to send you more information.  Simple.  I'm not sure if the winner receives anything other than community awareness, but community awareness can lead to more support, so I'm all for that!

And Lily Loves Pattison's!!!

At Pattison's, Lily got to try out their gait trainer, and I'm happy to say that she now has one of her own at home!  We're trying to get used to it, and unfortunately, she'll have to take a few weeks worth of a break from it due to the surgery, but she's taking assisted steps in it already!  We're taking it easy by using it predominantly as a stander for now, but we'll work her up to using it more as a walking device.  I just know that that won't take long!

So here are some very overdue pictures!!

Lots of balls!

I'm telling you, one day she's going to be a yoga teacher!

Preparing for the real fishing trip!

Lots of colors!

Fishing Day!

Bandaid Art

I think Lily would rather eat the markers than draw.

Ice Skating!!

You really should stop and smell the flowers

Her first manicure!

Time to go swimming

Lily's first facial!!

Checking out the tent

Getting ready for prom!

Dancing with Daddy!

My little ones


Prom Princess!


Wednesday, July 11, 2012

Pirates, Pools, and The Dalai Lama

A friend posted this on his Facebook wall:


When asked what surprised him most about humanity, The Dalai Lama answered:  "Man.  Because he sacrifices his health in order to make money.  Then he sacrifices money to recuperate his health.  He is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present, nor the future; he lives as if he is never going to die and then dies having never really lived."


This week, Gabriel has been attending a boys' camp.  Each day there is a different theme.  It started with Pirate Day on Monday.  This camp is being hosted by a friend of mine at her house, and when we picked Gabriel up from camp that first day, he was so happy and sweaty.  He had such a great time!  It was such a wonderful feeling seeing him so excited!


Later that day, Dave worked in the yard, planting some Confederate Jasmine against our back fence.  While he worked, the kids and I sat in an inflatable pool that we had bought a few days earlier.  It was so fun and relaxing, sitting there watching them enjoy the water.


That night, I was sitting on the floor with Lily, when Gabriel brought me a book to read.  Before long, I had all three of them sitting in front of me, while I read them a story, like a librarian would to a group of children.  Dave took a few pictures and videos of the event.  He considered it a priceless moment.


It was a PERFECT day!


Yesterday, as Dave and I were driving down the road, he asked me if I would rather he have a job that made a lot of money but required him to work sixty to eighty hours per week.  I told him no.  Time is more important to me than money.  Dave alluded to the above quote.  He doesn't want to be that man who never really lived.  Neither do I.


We reflected on Monday and how we both had such a great day without spending a whole lot of money (sure, we had to pay for Gabriel's camp and buy the pool), but it's not like we took a trip to Disney World and spent THAT much money (and might have even had a better time). 


It's the little things.  We've grown to love and appreciate them a whole lot more.  And I won't say that it's fully because of Lily, because it's not, but staying at home to take care of the kids and being forced to downsize our budget has helped us open our eyes to those smaller things. 

I wouldn't trade that Monday for a thing in this world.  I definitely felt like I was living.


Monday, July 9, 2012

Hateful Words

Dave says I shouldn't give this my energy, but that's easier said than done.  It has been eating away at me all day, and it's now time for a release.  Luckily, writing is a good way to release both the good and the bad energy that stirs within.


I subscribe to Google Alerts for Trisomy 18.  It's an easy way to get news and blogs on Trisomy 18 without having to do a search myself.  It's not always perfect, but I have found new Trisomy 18 families and some interesting information through the alerts.


Today's alert had this title:  "Life with a Trisomy 18 Tard (at the tax payers' expense). 


I know what "tard" means.  So I was curious as to what this article had to say.  I knew it wouldn't be nice, and I should have just stayed away, but at times, it's good to know what the opposing side is saying.


Here are some of the things the person (screen name:  KidlessKim) who wrote this article is saying about a child with Trisomy 18:


  • tard
  • defective loaf 
  • his family is "living in a fantasy world of what they WANT to see" (in response to the child's mother saying that he is "happy, interactive, and loves people")
  • tard loaf
Thinking about this all day, there were so many horrible things I wanted to say about this person.  I created this character type in my mind to make me feel better.  That this was indeed a "bitter, shallow person" as a commenter called her.  


Then I began to pity this person.  Obviously, for such hateful words to come out of a person's mouth like that, there must be some underlying problem.  Cowardice seems to fit.  It annoys me that this person is hiding behind her screen name and her computer screen.

So I have an invitation for her--"Kidlesskim."  I invite her to Charleston, to my house.  I invite her to come to my house, to sit in front of my family, and to look Lily in the eyes and say those horrible words to her.  And I'll record it all, and I'll post it on YouTube and Facebook and show the world what a horrible person she really is.  That's what I want to do, anyway.

And here's the thing.  Here's what she'll get.  Dave, Rani, Autumn, Gabriel, and I (Soleil is too young to understand) will be hurt by her biting words, but Lily?  Lily will look at her, maybe smile, maybe coo.  She'll just go on like any other day, loving her life and not worrying about Kidlesskim and her biting remarks.

So through all of this, with her "profoundly mentally retarded" state, Lily will come out the better person.  Better than Kidlesskim.  Better than me.  Better than the majority of us.  She's the one who time and time again teaches me such lessons about life.   If only I could take the negative junk and go on like any other day, loving life and not worrying about others and their biting remarks.  Knowing what Lily's response would be, for some reason, makes me feel better.

Thursday, July 5, 2012

Pictures of Camp

Here's Lily on her first day with this year's counselor, Margaret.
So studious!

Painting during Camping Week

I was told that Lily took a few sips of water.

Camp wears this little girl OUT!

Lily got to go swimming in the little pool, but the water was quite cold.  I don't think she stayed in too long.

I heard the other day that Lily took 25 steps in the gait trainer!!!  I'm pretty sure they helped her by pushing, being that the gait trainer weighs the same as Lily.  Hopefully, we'll be getting one of these soon to keep at home!

Lily also got to try out this piece of equipment.  Fix your head, Lily!

I'd like to thank all of those who donated to Pattison's this year.  Your donation helps children like Lily have a wonderful experience at summer camp!


Here's a video of Lily and Soleil.  I sometimes have people ask me what Lily and Soleil's relationship is like.  I think there are some people out there who don't believe that a child with Trisomy 18 can form relationships and interact with others.  I hope this video shows differently.

Wednesday, July 4, 2012

Summer Camp 2012 and Happy 4th!

 This is Lily's third week of Summer Camp, and things are going well.  She comes home exhausted and falls asleep around 8:30.  (Normally, she doesn't fall asleep until 11:30 or so.)  The first week, the campers celebrated holidays.  Lily dressed as a fairy for Halloween day, she wore her "Lucky to be me" shirt for St. Patrick's Day day, and she dressed in red, white, and blue for Fourth of July day.  She got to go trick-or-treating, dye Easter eggs, and plant flowers, and trickled throughout the day were therapy sessions, outdoor walks, and dancing "lessons."  I'm told that the OT got Lily to take a few sips from her sippy cup!  Way to go, Lily!


Lily's second week had a camping theme.  She missed that Monday because we were out of town.  But throughout the week, the campers did campfire painting, had fun in sleeping bags and tents, fished in a "pond" in the gym, and took a real hiking and fishing trip.  Again, scattered throughout the day were therapy sessions and other activities.


We're in the middle of Lily's third week.  No therapy today because of the 4th of July, and Lily missed yesterday due to two doctor's appointments.  Camp resumes tomorrow, though, where it will be Athlete Day.  (Monday was Doctor Day, and Lily got to dress up as a doctor.  Talk about a change of roles!)  On Friday, she gets to go to the Ice Palace and go ice skating!


I'm so excited about next week!  Last year, the finale was a luau.  This year, it's going to be a PROM!  How cute is that?!?!  On Monday, the campers are going to make flower arrangements and corsages and boutonnieres.  Tuesday, they get to shop for their prom outfit and have a tea party.  Wednesday is Spa Day, so they'll get manicures, pedicures, and facials.  Thursday is Prom, so the campers will have their makeup done and hair fixed.  Friday will be a field trip to the waterpark.  What a week!!!


Last weekend, we took a trip up past Atlanta to celebrate Joey's 3rd birthday.  Joey also has Trisomy 18.  We spent the weekend with her and her family, and Lily went to her first Braves game!  Joey has been sick for the past few days, so please pray that she gets better soon and the doctors can find out what was causing her high fever.


Good news from Lily's doctor appointments yesterday!  We don't have to see the nephrologist for another six months, and the pulmonologist took Lily off of the Pulmacort.  That was a breathing treatment Lily had to have every night.  We had to follow it with a tongue wiping so she wouldn't get thrush in her mouth.  That's not something that's easy to do since Lily's not thrilled with things being in her mouth unless it's on her own terms.  But the good news is that Lily is down to five medicines:  Erythromycin for motility, Prilosec for reflux, Singulair and Nasonex for allergies, and Iron.  She was on seven (or more if she needed an antibiotic), so five is a nice relief.


Today, July 4th, is a bittersweet day for me.  The sweet--celebrating our freedom and our country--is probably obvious.  But today is also the second birthday of a Trisomy angel, Lilly. (Her blog is http://pray4lilly.blogspot.com) I miss Lilly, as I know her family does.  And while I know that they are saddened by her loss, I also know that they celebrate the time that they had with her and their faith gives them strength in their loss.  How I admire this family!


And not to sound morbid, but thinking about one angel always make me think about others.  There are so many others, unfortunately, but a few come to mind because I was more closely involved with them:  Alice (oh, sweet, sweet Alice), Mikayla, Julia, Oliver, Caleb, Nolan, Brianna, Breanna, Grayson. . .Sadly, that list goes on. 


BUT, what strikes me so about the loss of these precious children is the greatness that has come out of the loss.  All, and I mean all, of the mothers of the children listed above have been so inspiring in their loss.  These mothers have walked through their loss with such grace and beauty.  I am constantly saying that I hope I will be able to do the same in the light of my own loss.  
So on a day like today, I am celebrating, sure, but there is also a sadness that keeps knocking at my heart.


I will post pictures of Lily's camp experience later, but Gabriel needs some attention, so we're going to either play superhero or look up knock-knock jokes on the Internet.


Happy Fourth!

Sunday, June 10, 2012

All Is Well

It's been a little over two weeks since Lily was able to come home, and I am so happy to say that things are going so well! She came home able to tolerate her original regimen of feeds, which was amazing to me because  she had been on a fluid diet for about five days.  While I don't know the level of her pain, it sure seemed as if she wasn't feeling any at all.  She was so happy to be home and proved it by rolling around on the floor like her usual self.


Unfortunately, she did have a horrible diaper rash, but it has gotten better.  Her stools still aren't regulated, and we're experiencing at least one blow-out per day, but putting all of that aside, she is doing better now than she was when she was well prior to surgery.  She's not vomited, except when she stuck her fingers in her mouth and gagged herself.  She's not been on oxygen at night, either.  I'm really thinking we should get another sleep study done to make sure we're not making a bad choice keeping her off the oxygen, but she wakes up in the morning and seems well-rested, something that was not always the case prior to surgery.

Lily's even been making a few new sounds, one that I swear sounds like she's saying "mom-mom-mom," but when you look at her as she's saying it, she looks more like she's saying the "f" sound.  I also heard her make a "b" sound that sounded like "bub-bub-bub."  If she could learn to call Gabriel that, it would be amazing!  And she's made the "f" sound in the past.  I take time (probably not enough) each day getting her to watch me make those sounds, hoping that one day she'll imitate on cue and learn to use those sounds to indicate that she wants something.


On Friday, Lily's physical therapist came with a company we've worked with to get Lily's stroller, feeder seat, and stander.  David, the sales rep, brought a gait trainer for Lily to try out.  My phone was full of pictures, so I couldn't take any or get any video, and my camera quit working a few months ago.  David took a video, but I haven't received it yet.  Otherwise, I'd post it.  Lily did so well in the gait trainer!  She took a few steps independently!  Nothing big, but still exciting for her first time!  I hope we get approved for it.  It will not only allow Lily to move independently around the house, but it will also help her build her trunk muscles, which I hope would help her gain more control over her balance.  Plus, she loves to stand, and the gait trainer will give her more freedom of movement than the stander does. 

How thankful I am to be reporting all of this good news!  I'm hoping that I will be able to do the same at the end of July, when Lily's hernia repair surgery will be done.  At least this past surgical experience gives me hope that she'll be able to handle the hernia repair surgery. 



Wednesday, May 23, 2012

Still Here, but Hopefully Not For Long

We are still at the hospital.  At 5:00 this morning, the nurse pulled up more residual formula than they wanted to see, so they slowed down her progress.  Fortunately, all the other feeds left the appropriate amount of residuals, so Lily is making progress.  Early tonight, they gave her a bolus (where her feed is given quickly) of 45 ml.  She held that one down.  Now she's getting a 90 ml bolus--and sucking the heck out of her thumb!  (This could be a sign that she's quite hungry!)  I'm anxious to see how she'll do.  Still, the doctors want to get Lily to the point where she's taking the amount she takes at home before they let her go home.  I'm fine with that.  


Despite being in the hospital, today has been a lovely day.  Around 7:00 tonight, I was holding Lily, and we were playing.  She kept batting me with her right hand which not only has an inactive IV in it, but also has a board holding her hand straight.  I made noises as if she was hitting me--"ooh, ooh"--, and she'd just smile the biggest smile.  Then I'd pretend like I was going to get her, and she'd cringe as if she was trying to keep away.  I also got a sweet laugh out of her as I tickled her feet.  She stood for a few minutes and danced while standing.  This little girl is feeling so much better!


It's so amazing to see.  I'm pleasantly baffled.  Since we've been in this step-down room, her heart rate, SATs, and breathes per minute have been wonderful.  She's not required any oxygen, even when sleeping, which is not how it's been at home.  It's quite miraculous! 


So I want to say that God is good.  But it almost doesn't sound fair to say that because what if something bad had happened to Lily?  I would like to believe that you would still hear me say that even if something bad had happened.  How could I not?  We have been given (so far) three amazing years with Lily.  In our sorrow, we have learned what it means to be held by God.  We have received the kindness of strangers and those we know.  We have held our family together when statistics show that we could be broken.  And the list goes on.  I acknowledge this for the better and for the worse.  Yes, God is good.  So I struggle with this because it's not just about the answered prayers.  Because I think a lot of people want to give God credit and call him good when the prayers are answered.  But sometimes, they're not, and how easy it would be to say that God failed when the prayers aren't answered.  But I think if you take a keen look at the little things in between, and you count those blessings, and you let God take over your life when things aren't going well, that's where you find His goodness.  It's there.  Always has been, always will be.

Tuesday, May 22, 2012

This Girl's Not Taking Baby Steps!

Yesterday was a good day!  Lily has had so many cords and tubes attached to her, that it does my heart good to watch them slowly go away.  Before she left the PICU, they took out the central line that was in her neck.  Once we got to this step-down room, they took off the blood pressure cuff and only put it on when they needed Lily's blood pressure.  Before I left and let Dave take over, they took out the high pressure oxygen cannula.  Oh, that was a horrible one because it was so big and heavy, and the tubing pulled at the tape that was on Lily's face.  And Lily does not like tape to be pulled from her body!  They decided to leave the oxygen off completely since Lily's sats were high and said they would use it when she was sleeping once she needed it.  Well, little miss I'll-Show-You decided she didn't need her oxygen AT ALL throughout the night!  No cannula!!  Shortly after I got home yesterday evening, Dave texted me to say that they had also taken out the ng tube that was sucking bile from the upper portion of her stomach.  That left nothing on her face!!  (She also has a tube at her button site, taking bile from the lower portion of her stomach, just so you know.)  I didn't get it until this morning, but Dave also texted me a picture of Lily sitting up like a big girl. . .and happy about it!  I'll include that picture below!


These are big steps!  But they get bigger!


This morning, the PT came in.  She was very encouraging, saying that therapy should be able to continue (conservatively) and that she should still be able to attend Pattison's Summer Camp.  She had Lily sitting up, and after I told her how much Lily loves to stand, she had her standing, and Lily was making herself dance!  Is this really characteristic of a child who, five days earlier, had bowel surgery?!?


I think the best news is that since Lily did so well off of the oxygen (she was considered critical care because of her lungs and not the surgery), she might be transferred to yet another room--basically a step down from the step down.  :)  AND (drum roll, please!). . .provided she tolerates her feeds (which they started this morning), she should be able to go home TOMORROW!!!  What a nice birthday present that will be for her daddy!


Speaking of her feeds. . .they've started her on a continuous feed that will give her (I believe) the normal 5 ounce feed that we give her at home but within a four hour time span.  After they see how well she does with this, I believe they are going to try the regimen we do at home.  Wow!  (Honestly, I'm not sure if this is the best course of action, but we'll see.  It just all seems so fast!)


I think I should also add that Lily has been getting nutrition and not just fluids.  They put her on TPN feeds on Saturday or Sunday, but the nature of a TPN feed is that it bipasses the digestive process as it is fed straight through the veins, so it's much harder on the liver.  They've been drawing blood and checking various levels to make sure Lily is ok with the amount she is getting.  But with every formula feed she gets, they are able to decrease the amount of TPN feed.  Hopefully, we'll be TPN free soon!


I'm amazed!  What a strong little girl I have!  For those of you who have been praying, thank you, yet again, for taking your precious time to do that!  We are surrounded by your love and your prayers, and boy, is that a nice, comfy blanket to have wrapped around you!  

I hope to follow up with more positive updates!  For now, I hope you enjoy the pictures!


Monday, May 21, 2012

This Will Warm Your Heart

Lily was moved from the PICU to a step-down room last night.  I really think she likes this new room.  After she got settled, she started playing with her toys, something she wasn't doing in the PICU.  She even gave me high-fives and reached up to touch my face.  Aw!!!  Dave stayed with her last night, and she did well, moaning a little at one time, but when the nurse came in to give her some medicine for the pain, Lily was asleep.  When I got here this morning, she was awake, but not wanting to play and fighting sleep.  It's 8am, and she's sleeping now.


Here's a video of Lily playing with one of her toys:






Sunday, May 20, 2012

Moving!!

I can't remember if I said this, but one of the reasons they decided to keep Lily in the PICU this morning was because her CO2 levels were higher than they liked.  This is normal, but it still made them want to keep her a little longer.  They drew some blood about an hour ago, and her levels have improved, so Lily will be moving to a regular room!

The process will start after shift change, which is actually happening right now, but it may be 9:00 before she's moved. 

Oh, this feels like a good thing, but I'm so hesitant now to get my hopes up.  I know the nature of a hospital stay can be up and down, so I'm trying to ride a constant middle line.  It just seems healthier emotionally at this moment.

Still in the PICU

Well, we thought that we were going to be moving into a regular room this morning, but there were a few setbacks in the night.  So here Lily stays, in the PICU, but they may move her later this evening.


Overnight, her blood gas levels were off.  She had too much carbon dioxide in her blood.  They changed her nasal cannula to a higher flow one, weirdly enough, she desatted into the 80s.  They lowered the flow, and now she's at 99-100s.  Her heart rate and all other vitals are good.  An x-ray showed pockets of lung collapse, but the doctor said that can be normal, especially givin her apnea history and the fact that she's very stationary.  We brought in her feeder seat and put her in that for a while, but then she started getting cranky.  She's back on the bed and just received a dose of pain meds.

The doctor said that being on the higher flow of oxygen didn't necessarily warrant her staying in the PICU, but that wasn't enough to warrant her staying here.  Still, they want to watch her and her blood levels and make sure that a regular room will be the right choice.

 As for now, she sleeps.  It's such a catch 22.  She's calm and not in pain, but she's still, and when she's still, the fluid just might not move the way it should, and that doesn't help her lungs.  But it's hard to argue with the numbers on the screen.  They look good.  So what do you do?


Thank you for your continued prayers. 

Saturday, May 19, 2012

A Moment of Wakefulness

What Led Up to This Episode. . .

Thank you, Cathy, for asking what led to this episode.   I think it's a great idea to share this part of Lily's story because it's could be a great source of information for someone who's potentially facing a situation like this.


I should preface by saying that she had done amazingly well the few weeks leading up to this incident.  Her vomiting had pretty much gone away.  Really, we had to watch her more for gagging because she kept putting her fingers in her mouth, and that would cause her to vomit.  So all was well. . .


Late Wednesday night/early Thursday morning, Lily vomited in her crib.  We didn't know this until we woke up with her the next morning.  Of course, our first thought was that she had gagged herself.  Dave gives her her water/Miralax combination as he's getting ready for work, and I think she spit a little of that up.  So again, I was thinking that she gagged herself.  When I fed her the formula, she vomited.  My initial thought was that she had gotten congested from vomiting in her crib, so again, no real worries, just the sinking feeling that the vomiting would again not be predictable.  She was quite lethargic, so a little while later, I took her out of her feeder seat and laid her on a pillow on the floor.  About 30 minutes to an hour later, she vomited.  That led me to believe that she had a stomach virus. . .again.  (She has a cousin who had recently possibly had a stomach virus, and Lily had been around her, so naturally, I thought Lily had caught what she had.)


I put her on a Pedialyte and water regimen, and she had trouble throughout the day keeping that down.  Still, I thought stomach virus.  That night, she was flinching a little from pain, but I still thought that this was just pain from the virus.  I wanted to check her oxygen levels, just to be on the safe side, and put the pulse ox on her.  Her oxygen levels were great, but her heart rate was in the high 170s.  I know that dehydration can cause a high heart rate, and being that she had vomited so much, we figured she needed water.  After we gave her the water, her heart rate went down in the 160s, so that led me to believe that the problem was that Lily just needed water.  I might add that all day she was lethargic and her poor little eyes showed that she was not feeling well at all.


One other thing was that her stomach looked distended.  Since I had recently increased Lily's 1.5 calorie formula and lowered the 1.0 calorie formula, and her face looked a little puffy, so I thought that maybe she was gaining a little weight.


Dave slept in the living room with Lily to listen out for her in case she vomited overnight.  In the morning, I woke up to her making this cooing sound that was very happy sounding, so I thought that maybe she was finally feeling better.  But that cooing sound kept going and sounded the same each time.  It was quite an eery sound.  Dave asked me to give Lily her water/Miralax combination.  When I picked Lily up, when I carried her over to her seat, when I set her down--she flinched and her eyes got big as if something hurt her.  She even seemed quite uncomfortable sitting in her seat.  I pulled out the pulse ox again, this time to check her heart rate.  It was in the 190s!  I had even watched as it got above 200.  That told me that something just wasn't right, so I made arrangements for Soleil and headed for the ER.


I'll save the details of the ER for a later date, for there's one part of that story that I'd like to share.  But I will say that I truly believe that Lily's recent diaphragmatic hernia diagnosis helped the ER staff to consider her problem a bowel problem, which it was.  It was also helpful that Lily had not had a stool since Tuesday or Wednesday, when she's normally at least once a day.  It all rushed on us so quickly, it seems.


But Lily is doing well.  She is extubated!  Her sats were at 100 when they pulled the tube out, but they put oxygen on her since she was asleep and that's what we usually do when she's at home.  Although her heart rate has gone up a little, she's had pretty good numbers with that throughout the day.  The doctor is talking about her going home around the middle of next week, but I'm wondering about that.  I know of other T-18 children whose recovery from bowel surgery has been a much slower process, so I'm at least keeping that in mind.  Trying not to be negative, but trying not to have false hope as well.


Thank you so much for the thoughts and prayers sent Lily's way.  I hope to report with more good news in the next day or so.

4 am update

It's 4:05, and I was having a little trouble sleeping. Dave and I went to rest in the quiet room, I fell asleep for about two hours, then woke up thinking it was 8:20.  Couldn't go back to sleep without checking on Lily. She's doing well. HR is still about the same. Temp too. When we left, she was at 24 breathes per minute on the machine. When I got here, they had her down to 16. They just moved her down again to 14.  This is progress. So far, she's just getting fluids. They will start Pedialyte once the tube is out. She's quietly resting/sedated with little movements here and there.  I'm beginning to feel a little overwhelmed with all that's going on. I'm extremely touched by the amount of prayers and that's just building. I'm not complaining, just deeply touched. 

Friday, May 18, 2012

Update from Surgery

Lily has been out of surgery for a while, but I wanted to be with her before posting.  Surgery went well.  It seems as if part of her bowels basically had what is similar to an elastic band around, causing the obstruction and also keeping blood flow from getting to that area.  Basically, that area died, so they took out 10 cm worth of bowels.  She's trying to come out of the anesthesia, but they have sedated her to keep her calm.  She's intubated so she doesn't have to work at breathing and can focus on healing.  She was trying to turn her head--naughty girl!--, hence the sedation.  Heart rate is in the high 140s, which is a whole lot better than the 200 that we saw when I brought her in this morning.  Temp is 37.9, which is better than the 38.5 I saw when they first brought her back from the OR.  She's tried to take a few starting breaths on her own, but I think they want to keep her intubated until the morning at least so she doesn't have to work so hard.  But they're going to let her dictate that.  I'm not sure what her blood pressure is.  I don't see it up at the moment, and I have no idea what the numbers mean anyway.
Thank you to all of you who have prayed for Lily, sent kind words, texted, visited, and/or watched Gabriel and/or Soleil. I apologize if I haven't responded.  But know that your prayers have been felt, your words have comforted, your texts have been read, your visits have been a needed distraction, and your help with Gabriel and Soleil has given me peace knowing that they are in good hands.  I am touched beyond words and can not say thank you enough. 
As for the prayers. . .I must say that I had an overwhelming peace during her surgery.  I know all the prayers weren't for our peace of mind, but knowing that the prayers were out there was so comforting.  So, very humbly, I say thank you.

Prayers Needed

Lily has been admitted to the PICU. We're not sure what is going on. Yesterday, she was vomiting, so we thought it was a stomach virus. She had a high heart rate last night and this morning. A little uncomfortable and very lethargic last night, but obviously in pain this morning. I think they've ruled out appendicitis, but we think there may be some sort of bowel problem. Just not sure right now, but this is not the playful, little girl we're used to seeing. So please pray. I'll try to keep updates, but I'm pretty shocked and finding it hard to process everything. This is all so new to us.

Thursday, May 10, 2012

Surgery

Lily had her doctor's appointment today with the pediatric surgeon.  Before her appointment, she had to have an upper GI done.  The radiologist indicated that things looked good, but surprisingly, that Lily's stomach emptied quickly (even though she has motility issues) and that she refluxed (even though she's on two medicines for reflux).  I left that appointment feeling good about Lily's hernia and thinking that maybe we'd avoided surgery.


Apparently, the surgeon didn't think the same thing.  According to him, Lily's hernia is called a morgagni hernia, specifically.  It's still a diaphragmatic hernia, he said, but that's all I know.  I think I was in a little shock hearing that he wanted surgery and thinking how rushed it all felt, that I can't remember exactly what qualifies a hernia to be a morgagni hernia (after reading a little about it, it seems to be that it's on the right side of the diaphragm).  It seems as if Lily's colon is going up into her chest cavity, and there's a risk of blood being cut off and that wouldn't be good, but the doctor believes that her colon is moving up and down, so sometimes a scan or x-ray will catch it.  Sometimes not.  So surgery it is.  Luckily, this isn't urgent, so we have about a month before the surgery is scheduled.


So what's planned is that the doctor will go in laparoscopically to see what's happening (since her colon seems to be moving up and down).  The repair will either require stitches or mesh, depending on the severity.  I asked the doctor where this surgery was on a scale, and he said it's a pretty minor surgery.  


It's not the surgery that bothers me as much as it is the anesthesia and Lily coming out of it.  I keep going back to Lily's g-tube surgery and how it took her longer than normal to come out of the anesthesia.  While Lily is bigger and stronger, it's still a concern.


We also learned today that the doctor believes that this has existed since birth.  That was a surprise to me.  I was afraid it was caused when she fell off the bed in Pennsylvania.  If that's the case, it's pretty amazing that it's not bothered Lily.  Plus, it seems as if dh's can be pretty severe and lifethreatening.  That, in itself, is amazing that up to this point, Lily's has not been lifethreatening.


So the surgery is scheduled for June 8.  I admit I'm a little anxious.  Until then, I'm going to try to stay calm and focus on the moments we have together.   There are so many of them, and they are so beautiful.

Sunday, May 6, 2012

A Shocking Surprise

Lily had been doing so well with her vomiting.  I believe it had been a good three weeks that we went vomit free. . .except she had started putting her fingers in her mouth and gagging herself and sometimes spitting up a little from that.


That was the trick she pulled on Thursday.  I was in the other room and heard her doing her little gag cough, but by the time I made it into the living room, there was already a puddle of vomit on the floor, running down her face and pooling in her mouth.


As soon--and I mean AS SOON--as the episode had stopped, she was snotty and congested sounding.  My fear was that she had aspirated on her vomit.  I kept an eye on her that day, but it seemed like as the day wore on, she got worse.  She even seemed a little blue around the lips at therapy, but when we got home, I checked her oxygen level, which was in her normal 98 - 100 range.  Because of that, I decided to just keep an eye on her.


But as always, when the congestion is around, so is the vomiting, and sure enough, she started vomiting.  


That, coupled with a little wheezing, took us to the doctor on Friday.  She heard wheezing, did an RSV test just to be sure, and because that was negative, sent us to get Lily a chest x-ray to check for aspiration pneumonia.


At the end of the day, I got the call from the doctors office.  No aspiration pneumonia, but. . .


a surprising discovery.


Lily had a few rib fractures and a diaphragmatic hernia.  Both of us were quite surprised.


We think the rib fractures came from Philadelphia, when Lily fell off the bed.  :(


As for the diaphragmatic hernia. . .I have no idea.  It's new for Lily.  She's had multiple ultrasounds and x-rays, but this is the first it's been seen.  All the doctor could say was that it can be quite dangerous if you're born with it because the lungs haven't developed, but since Lily is three, her lungs should be developed and that should not be a problem.  Still, she's referring us to the pediatric surgeon who follows Lily for her g-tube and to pulmonary.  At least these two doctors are familiar with Lily.  But I must admit that I'm a little worried.  Just a little.  I'm trying to remind myself that there's no reason to worry since I don't know any outcome as of yet.  But prayers would be greatly appreciated.


As for school. . .we decided not to send Lily to school this year.  There are only four weeks left, and we're a little concerned about the makeup of the class.  Lily would be in a room of seven to eight four year olds (That's because she would be in the afternoon class.  Three year olds make up the morning class.)  Some of these children, from what I understand, have behavior issues, and I'm not so sure any of them are wheelchair bound.  We're just not comfortable with that.  


Instead, Lily is going to continue with her therapies here at home.  And it may sound short-sighted of me, but honestly, in the grand scheme of Lily's little life, I don't think her educational development is as important as her physical development.  And I don't think her physical development will be the focus in school.  There it will be her educational development.  Sure, if Lily knew her colors, that would be pretty spectacular, or if she knew the difference between a cat and a dog, let's say, that would be pretty spectacular.  Again, in the grand scheme of her life, I just don't think that's the most important focus we should have.  It doesn't mean we'll never send her to school, but it certainly makes us reconsider sending her to school when the environment doesn't seem to be conducive to her well-being.  Of course, we want her to go to Pattison's anyway, but she wouldn't be able to start there until she's at least four, and since it's a charter school, if there are more applicants than there are spaces, they implement a lottery.  The luck of the draw.  Still, we hope.


But for now, there are other more important issues.  At least we don't have to worry about aspiration pneumonia.