Monday, February 29, 2016

Lessons from the baby monitor

5:28 a.m. Sunday is not exactly my preferred call time.  As any parent knows, though, you can never predict or control the time your children decide to wake up.  Normally on a Sunday morning, the boys and I don't need to be up before 8:30 a.m. (not that Reese or I EVER sleep that late).  

Saturday night I put Brinkley to bed without his CPAP machine, so he was not confined to his bed.  That being sad, the tiny little voice coming through the baby monitor jolted me out of bed for fear of what kind of destruction I would find in his bedroom if I didn't attend to him quickly.  Diapers and diaper cream covering the room, dressers and bookshelves emptied, these are surprises that have welcomed me into his room before and ones that I didn't want to find again.  (Need proof, you can follow his shenanigans by looking for #brinkleywashere on Instagram or Facebook.)  

As I pulled my earplugs out and started getting out of the bed, I realized he was signing.  I stopped to listen for a moment.  The tiny little, speech-delayed, voice that can hardly utter a two-word phrase was signing.  The tears began to flow as I heard, "loved by you, who I am, who I am."  In his broken little speech pattern, he was perfectly in rhythm singing Good Good Father.  (You can find the lyrics below.)  

Both of my boys love this song and can belt it out with the artists as we listen in the car. This is not the first time that Brinkley has surprised me with this song.  A week or two ago we parked our car in the Target parking lot, BIG SHOCKER!  (This may have been the second or third trip of the week, I don't even keep track anymore.)  As I opened the door to take him out of his car seat he was singing the same lines, "loved by you, who I am, who I am."  I had to fight hard not to sob standing there in the parking lot.  All I could do was look at him and say, "yes you are and don't ever forget that" as I snuggled him close.  
At that moment, a familiar scripture hit me like a ton of bricks.  Psalm 119: 11 says, "I have hidden Your word in my heart that I might not sin against You."

It's hard as the parent of a young child with intellectual and developmental delays to know if they understand and process the things that you try to teach them.  Some things you can see obvious results, like walking or using utensils, but others aren't so easy.  It is hard to know if they grasp the concepts that you try to convey like love, friendship, kindness, etc.  It adds another layer of difficulty when speech is difficult for them.  They can't articulate back to you what they understood, or didn't.  

No matter the depth of his understanding of the words he loves to sing, one thing is certain, the concepts of Christ's love for him are finding their way into his heart.  There are a lot of things that I can't control in the environment that my children live in.  One thing that I have some control over is what they hear in my car.  These incidents, along with Brinkley singing the radio station jingle, prove to me that the things that they hear in my car (and we spend A LOT of time in the car) make an impact on them.  Putting truth before them constantly provides a way for my boys to hide The Word in their hearts, even when they don't know that's what they are doing.  

I remember sitting at a table in the hospital cafeteria one afternoon while Brinkley was still in the NICU.  My dear friend Mindy had brought her husband to meet us and have lunch with us.  Sean is also a pastor and the parent of a child with Down Syndrome.  At one point during the meal, Bryan asked Sean if he had been able to teach Sid about Christ and if Sid understand.  I don't remember exactly how Sean responded, but I think I know the answer.  Our God is a Good Good Father and he loves my son so much that He gave His son for him.  He loves my son so much that He has chosen him to come to this earth carrying an extra chromosome.  He has brought him through two open heart surgeries and may other medical complications that could have easily taken his life.  He made him exactly the way he wanted him.  Brinkley's genetic makeup isn't a flaw or an accident.  It is part of our Good Good Father's plan and I couldn't be more humbled or in awe of being a part of it.  

It is my prayer that despite what the world may throw at my boys that both of them will have the truth hidden in their hearts that they are loved by our Good Good Father and that is who they are!  

Good Good Father

Oh, I've heard a thousand stories
Of what they think You're like
But I've heard the tender whisper
Of love in the dead of night
And You tell me that You're pleased
And that I'm never alone

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

Oh, and I've seen many searching
For answers far and wide
But I know we're all searching
For answers only You provide
‘Cause You know just what we need
Before we say a word

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

Cause You are perfect in all of Your ways
You are perfect in all of Your ways
You are perfect in all of Your ways to us

You are perfect in all of Your ways
Oh, You are perfect in all of Your ways
You are perfect in all of Your ways to us

Oh, it's love so undeniable
I, I can hardly speak
Peace so unexplainable
I, I can hardly think
As You call me deeper still
As You call me deeper still
As You call me deeper still
Into love, love, love

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am

You're a good good Father
It's who You are, it's who You are, it's who You are
And I'm loved by You
It's who I am, it's who I am, it's who I am
You're a good good Father

Wednesday, February 3, 2016

And on the 8th day...

I'm sure you are all familiar with the Biblical account of creation.  In six days God created the Earth and on the seventh day He said that it was all good and He rested.  Brinkley decided to wait until the eighth day to rest.  Rest in the comfort of his own home that is.  Brinkley felt much better yesterday and played some.  He smiled several times and even laughed a few times.  Late in the afternoon, we consulted with the ICU team and pulmonology (and I consulted with a couple of great friends who are medical professionals on my on) and decided Brink was to the point that I could care for him from home.  He is still sick and most likely contagious and will not return to school or therapy until next week.  Currently, he is still requiring oxygen but we hope to be able to ween that over the coming days.  We will follow up with pulmonology on Friday morning.  You can see from the photos that he perked up a lot more yesterday.

He managed to convince the nurses to let him play with the thermometer.

One last chocolate pudding before we headed home.

More thermometer fun.

Praise Jesus, I'm going home!



Please continue to pray for him.  There are so many things to think about when treating a child who is medically complex.  I failed to think about all the therapy that he has missed for the last two weeks.  It never occurred to me that I should ask for therapy while he was admitted.  He laid in the bed for eight days, plus the two days he was home sick.  When I took him out of the bed to go home, he nearly hit the floor.  He poor little legs are like jello.  Being bedridden for a child with hypotonia is terrible.  I didn't realize just how terrible.  We've got a plan of exercises to try at home until we can go back to therapy next week.  Please pray that he hasn't regressed and that he will bounce back quickly and stronger than ever.

Monday, February 1, 2016

Day 7

Today makes the seventh day of our stay.  This is our longest stay in about two years.  We are hoping that it will be wrapping up soon.  Brinkley is starting to feel more like himself and actually ate some of his lunch today (chicken and fries).  His favorite part of lunch was the chocolate pudding.  He was not interested in dinner but did scarf down the vanilla pudding.    He played a little with some toys on his bed.  

He still needs oxygen support and is needing more help than usual at night.  His body temperature is staying in his normal range now.  We are attempting to put him back on his home settings for his CPAP machine tonight.  If he does well we will discuss a plan for working toward home.  Small steps are positive steps and we've made a few, so things are moving in the right direction.  

Please, please, please pay attention to your symptoms!  If you have a cold, stay home and take care of yourself.  This strain of RSV is AWFUL and could (and has) take the life of a person that is medically fragile.  In an otherwise healthy person, this virus simply looks like a bad cold.  This is not isolated to the upstate.  I heard today that the peds cardiac unit at MUSC is, and has been, full of terrible cases.  Many of our Instagram friends have told us that their children have been battling this also.  It's everywhere and is putting so many of our fragile kids in ICU.