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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Tuesday, September 13, 2016

Train ride and hospital ride

Sunday afternoon we went to the New Hope Valley Railway to ride an old steam engine.  (You can buy tickets to ride either a steam engine or diesel engine when they have scheduled rides.  Check out their website for the information and to buy tickets online.  You can also buy them in person.)  My boys LOVE steam engines.  Solomon plays with Thomas the Train tracks and trains pretty much every day.  Hunter likes studying steam engines and how they work.  And sometimes he'll play trains with Solomon too. 

We first picked up our tickets:

Then off to the train!  The train ride lasted about an hour.  We all liked it.  I think I love the sound of the train best.  I liked watching Hunter's face just studying how everything was working.

Here is the steam engine:

The open air train cars were pleasant - as long as we were moving!  (It was a HOT day.)

Halfway through the ride, the train stopped and the engine was moved from the front to the back.  The engine had to go up a little farther and switch tracks, then came back on the track next to us before finally hooking back up.  (I think my boys called it "coupling" and "buffering")

That Sunday, they were hosting a "Working on the Railway Day" and had little tents set up with different information about train related things.

Hunter asked the man at the telegraph station a number of questions:

We got to go into several train cars.  The mail car was interesting.  There was even a little video showing how they would just throw out bags of mail at designated spots.

The baggage car had a coffin in it!  (complete with fake skeleton):

The boys had fun on the handcar:

There was a large toy train set up and running when we first arrived.  Unfortunately it was closed down when we got back to that area.  We promised the boys we would go back soon to watch it.  (You can do that for free.)

I've driven under the train's bridge a number of times, but had no idea what a neat place it
was.  The boys got free tickets for next year, so hopefully we'll get to ride again.

Tabby has mostly been in pain, except for a few hours here and there, since last Wednesday evening.  Early Sunday afternoon she said the pain was gone and she was just really sore.  And that she really wanted to go on the train ride.  Unfortunately, she ended up feeling really rotten again while we were there.  Then that night, I was putting the boys to bed and she burst into the room gasping and saying she couldn't breathe well.  She felt her throat was mostly closed up.  I tried a few remedies really quick but then when they had no effect, we went to the emergency room.

They took her back as soon as I told them what was going on and the nurse looked into her mouth.  She said Tabby's air passage was "Wide open.  Completely normal."  We were taken back to a room in the ER and they did an EKG and hooked her up to the monitors.  Everything looked good even though she seemed to still be struggling to breathe.  Just to be sure, she then got a chest and throat x-ray.  All good.

So she was finally given a medicine to calm her anxiety and one for pain.  We left about 2:30 a.m. and she was breathing fine and felt a little better.  She pointed out that she had now been to the hospital more times than Lilly.  I told her that she was a bigger mystery than Lilly.  At least with Lilly, we knew what was wrong with her every time!  I feel so helpless and frustrated not knowing how to best help Tabby.  Can't wait for her upcoming testing.  Though I'm nervous thinking about "What if the tests don't reveal anything?  Then what?"  Tabby is so afraid of being an invalid.

Now here it is Tuesday night and ... the chest and stomach pain is still there.  Now how discouraging is that?!  All she wants is to go to school and run cross country.  I told her obviously that is too much to ask right now.  :(  Though of course we keep praying.

One of my ways of coping is guzzling an awesome Trim Health Mama drink called the "Singing Canary."  The recipe is in their cookbook or you can get it on their website for free.  Read their impressive description of this drink:

"Are you exhausted? Living under chronic stress? If you’ve been diagnosed with adrenal fatigue, you’ll want to make this drink frequently. But all of us can benefit. If you’ve had too many late nights or simply need a battery recharge, then drink the Singing Canary. It detoxes the body, beautifies the skin (super-high vitamin C content), has cancer-fighting power (thanks to curcumin), and has weight-loss benefits to boot! It has been especially formulated for tired, inflamed bodies, with each ingredient carefully chosen to be a powerful adrenal healer. There is no caffeine. It contains only deeply nourishing, soothing, hydrating, healing, tenderly awakening ingredients that create a delicious adrenal reviver! And despite the fact that it contains 1 full teaspoon of adrenal rebuilding, inflammation-fighting turmeric powder, it’s remarkably delicious—think Sunny D meets Orange Creamsicle®."

Sounds pretty good, huh?  I tried to get Tabby to drink it but she wouldn't.  Oh well, more for me!  ;)

Today I came across a scripture my friend C. from Haven Enterprises wrote out for me once.  It was a good reminder for me:

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." - Galatians 6:9

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