Breaking for the Better

On this day, 3 years ago, we started the journey of learning the boys’ diagnosis.  Reading this post from that time is hard for me.  It was the most confused, scared, vulnerable, and broken I had ever been.  To be honest, over those next few weeks I mourned the children I was expecting, and started preparing for the unknown.

That sounds harsh; to mourn your own children before they are even born.  But mourning who they were not made it possible to celebrate who they are.  I knew each good day was to be cherished.  And vowed to find joy even if the days were bad.

Looking back, I think breaking was important.  The me from then wasn’t ready, and couldn’t have handled this.  They say you don’t know your strength until it is tested.  I don’t think mine existed until it was needed.

I think of stained glass windows.  Broken glass, becoming something new.   Many of you are part of why I was able to put my pieces back together. Thank you for being there for us then, and thank you for being there for us now.

Three years later, we do in fact find joy in each day.  And there’s a beauty in the broken-ness that I could never have anticipated.

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An update and something to chew on

First: Many of you have asked about Landon since the last smiley update.  He’s doing great!  He was even off of oxygen for most of the day on Tuesday, needing it again when he got in to a deep sleep at night.

To recap Landon’s events:

Wednesday May 18th: Not managing saliva well, LOTS of drooling and even a little choking.

Thursday May 19th: Projectile vomiting (he never does that), choking and aspirating on it.

Friday May 20th: On close watch, call in Rx for steroid and antibiotic with help of local Primary Care Dr.   Nurse D also consults with Pulmonologist and they agree we can continue to manage at home, with nebulizer every 4 hours for at least 24 hours.  But if we have to use more than 2 L of oxygen, to go ahead to the ER.

Saturday May 21st Long night, day, and night, but I stay on top of the treatments, and Landon is alert and coughing.  By Sunday evening, I’m feeling sure we’ve “beat” this, and he’ll just need some time to keep clearing his lungs.

Skip to May 31st, and he went most of his waking hours without any oxygen  support!

That means we went from event to “baseline” within two weeks! WITHOUT going to the hospital!  Yay everyone involved!

We’re not sure what kicked it off, but we can’t rule out teething since the drool was so excessive, and he’s clearly trying to cut through some gums.

 

Speaking of teeth:

Landon and Nolan went to their first dentist appointment! They are two and a half, so ideally we would have gone before now, but to be honest, their teeth came in very late.  (This can be attributed to neurological issues, seizure meds, or the lack of chewing to soften gums).  Nonetheless, it was time to let a professional check out their chompers.

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They were great!  Landon in particular would like a personal gum masseuse 24/7 I believe.  He was all smiles.  Both boys cooperated well, and no one lost a finger!  :-)  They felt confident they could handle cleaning the boys’ teeth, so they’ll get on a twice per year schedule soon.  If for some reason anything more extensive is needed, we may have to explore sedation dentistry.  But until then – we’re feeling good about our local team!

They feel good about our dental hygiene routine at home.  As a reminder:

We brush their teeth with Tom’s of Maine Silly Strawberry (Lower sugar) toothpaste.  We also wet their mouths, scrub their tongues, and suction our their mouths throughout the process.  It’s actually one of my favorite therapy items to do with them!  Big Brother even likes to help.  (No surprise!)

In summary, 5 out of 5 dentists approve of our sweet boys, and the smiles they inspire.

 

Warriors

Landon is in warrior mode right now. We’re not sure what exactly kicked it off, but subclinical seizures, autonomic dysfunction, a few clinical seizures, and a sudden shift to not being able to manage his saliva have gotten him down.  He’s been vomiting, choking, and is on around 2L of O2. We can play chicken or egg all day and never figure that out, so instead we’re focusing on what we can do to make a helpful impact.  He’s starting an antibiotic and steroid, and we’re increasing treatments to every four hours.  (Coffee please!)  We’ll stay the course and hope we see improvements the next 3 days, and hopefully avoid a serious aspiration event in the meantime.  He came through one of these episodes with at home treatments in February, and we’re hopeful for the same result.  D took fantastic care of him today, and I have the torch starting now.  If we can see him turn a corner without needing 3L of O2, we can likely get through this at home.

Prayers are appreciated.

 

I am also bringing this up, because I want to tell you a story. Of a little boy who is 5, and after God’s own heart.  Thanks to a new afternoon nap schedule at his day care, big brother has been full of energy – even between the hours of 9:00 pm and 6:00 am.  (Pour me another coffee please!)  I was sleeping off and on, but never deeply because I needed to listen for Landon.  Loudly over the video monitor, I heard early signs that another choking/coughing spell was on its way.  So at 4:00 am this morning I hit the ground running.  As I was running through the kitchen I ran smack in to big brother.  I kept moving quickly toward the twins’ room, and before I could ask him what he was doing, he said “I was coming to make sure you heard!”  He stayed by my side as I rolled Landon to his side, I suctioned, and I tried to keep his airway clear as he continued to struggle.  I asked big brother to go get daddy because mommy needed help with this one, and off he ran.

 

Things calmed down, everyone settled in, and it took some convincing to get big brother back in bed, rather than keeping watch, which he offered to do.

 

Horrible sleep habits aside, I am sad that he knows this is urgent, this is important, and that we need to protect the twins. But I am also incredibly proud, grateful, and in awe that even at the age of 5, he gets that this is urgent, this is important, and we need to protect the twins.  There are circumstances that I wish were different for his sake, but I remain thankful for what he is learning.  A self-lessness, the heart of a caregiver, and a compassion that is hard to come by naturally.  I don’t know where he is headed in life, or what his path will be, but I’m excited to watch it unfold.

 For he, too, is in warrior mode.