Monday, September 1, 2014

An Update on All Things Emily

World?

Our girl started preschool last week.
I'm not sure I ever even mentioned that she was going to preschool.

It was an emotional day.
Not for Emily but for me.
I cried the entire three hours she was at school.

She loved it.
She's only been twice but whenever we mention the word school she smiles such a big smile and nods her head yes over and over again.


She will benefit from the social interaction with the other kids, and as a bonus she qualified for one on one speech therapy during the time that she's in class.

When I picked her up on Friday her teacher asked me if Emily had ever tried chocolate milk.
I laughed a little bit and said no.

"Well she tried it today," the teacher said with a smile.
She didn't like it and she wouldn't take more than one sip but it's more than I've ever been able to accomplish.

Lately, Emily loves to have a portion of whatever we are eating on her own plate.
She carries it around with her and every few minutes she will smell it.
It's kind of adorable.

While we're on the subject of Emily I'll give you a quick rundown...

We recently met with her cardiologist.
They did an EKG and an echocardiogram.
Her echo showed that her heart is enlarging at a faster pace than the cardiologist expected at this point.
He's not overly concerned though, and we have six months before we'll take her back for another MRI of her heart.

We are meeting with a new feeding therapist.
After one meeting with her her I knew that if we had been meeting with her all along Emily would be eating by now.
We actually saw her once when Emily was a baby, and I was impressed with her then, but the day after that initial appointment Emily was rushed to the hospital in an ambulance and spent the next three months there, and was grounded from drinking her bottle for what would be the next six or seven months.

After that, this therapist's name remained in the back of my mind and whenever I would mention her to our other feeding therapists who came to the house they told me that she wouldn't do anything more than they were.

They were wrong.
And initially I was upset that I didn't make more of an effort to contact this other therapist, regardless of what I was told about the therapy we were receiving at the time.
It does no good to be upset; instead I'll focus on gratitude that we are seeing her now.

This new therapist suggested that we meet with an occupational therapist to have Emily evaluated for Sensory Processing Disorder.
Again, we have been meeting with occupational therapists for Em's whole life, and never once did any of them suggest that Em had SPD.
I had her evaluated last week, and she loved the tests..



At the end of the hour long evaluation the therapist told me that Em didn't need therapy...at least not from him.
The only thing she has issues with really, is getting her hands messy and he feels that we can accomplish more at home than he can.
So it looks like we will be playing with pudding and shaving cream and other equally messy things.
Feel free to join us.

What else?

We met with a physical therapist and an orthotist (I asked the man what he was called because for the life of me I couldn't come up with it) because of concerns we've had with Em's feet.
Her heels and ankles turn in pretty badly and make it difficult at times for Em to balance.  And if left untreated, she would eventually have problems with her hips.

She was fitted for some braces and we got those last week.  She will likely need to wear them for a year or two, but thankfully they don't bother her, and we are amazed at the difference in how she walks when she has them on.

One of these days I'll see if I can get her to hold still long enough to get a picture of them.

Finally, we recently changed Emily's formula to something that is a little bit more age appropriate.
We are always really hesitant to mess with formula because of how sensitive Em's tummy is, but this has been our easiest transition.
She tolerates this formula better than she has any of the others, and she seems to have less reflux with this formula.

We meet with her GI doctor next month and will discuss the pros and cons of adding blended foods into her diet.
We know it would be a lot harder to track her calories that way but we would like to know that her tummy can tolerate food though, so we may make the effort and start a blended diet slowly.

To be honest though, right now I'm not sure that we'll ever get to a point where Emily will eat.

Last night Emily was playing with her cousins and got a little bit of dirt in her mouth.
She immediately gagged and threw up and then just cried.
If anything, it will be an incredibly long uphill battle.

It seems that more than ever, my life is filled with Emily's appointments, and now that we've added dropping off and picking up from school a couple of times a week...my calendar fills up quickly.

I feel like I've got to start scheduling in things like laundry and cleaning the grout.  Because cleaning the grout is important.

I have a lot of people question me about my blog ... why I don't write ... or when am I going to update...

I'll try harder, I really will.

Thanks as always, for checking in on us.









Tuesday, August 19, 2014

Checking In From Moose Creek Ranch

For the next few days we are nestled into a cabin that sits on the edge of a small stream, where the air is clean and smells of conifers, and the night sky is filled with stars that you wouldn't even begin to see in the city.
After Emily was fast asleep Jason and I snuck out of the cabin and went for a walk.  The air was cool and it was beautiful.  We didn't go far...although Jason reassured me that his headlamp would be a sufficient weapon against any bear we might encounter, I didn't believe him.

We are minutes away from both Jackson Hole and the Teton National Park.
We drove to see the Grand Teton tonight.
The sun was in the absolute worst possible place for a decent picture, but as it turns out, I'm in love with the picture I got.




Do you see that tallest peak?
Jason has climbed that.  Listening to his description of that hike, I'm grateful he did it before he became a husband and a father.

The stream that is gurgling right outside my window is lulling me to sleep, but let me share my other favorite picture so far from our trip.


God has given us such a beautiful place to live...I hope that you can see that beauty wherever you are.

Monday, August 4, 2014

Happy Birthday Emily


We love you sweet girl.
Thank you for coming into our family three years ago.



Friday, July 25, 2014

On Being Emily's Mommy

So here's the thing.

There is something about living your life every single day with the question of 'what if' in the back of your mind, or the not so back of your mind depending on the circumstance, that changes you.

There's something about quieting the fears, over and over again, every single day, that makes you look at life differently.

And there's something about the heaviness of an unknown future, more unknown than just the unknown that is part of existence, that makes you weary.

There are a lot of tears, there is a lot of grief that hits you when you least expect it,  there is a lot of telling yourself over and over again that it's okay to let go of what society tells you is the norm, there are quiet moments when you wonder if you are always, for the rest of this life, going to feel the heartbreak that came the day you were told there is something wrong with your baby.

But here's the other thing.

There are moments of clarity, glimpses of the bigger picture, of the eternal picture, that can only be defined as divine ... and in those moments of clarity you know that all of it - the good and the bad, the bitter and sweet - it's a gift.

It's a gift bigger than you can comprehend, and because you know it's a gift ... because you know she's a gift, you live your life differently than you might have otherwise.

You play in the water more, even if it means changing her clothes three times a day.
You laugh at the puzzle pieces that are thrown across the room, because you know she does it to hear the sound once they land.
You sing the alphabet song 27 times a day.
You let her sit on your lap while you're working, and patiently delete what she manages to type.

You stop at every single little thing that has a number and you wait while she points to each one.
You snuggle her to sleep every single night because it's what she needs.
You willingly share your space in the bed when she wakes up and comes into your room every morning between 2:00 and 3:00 because it's also what she needs.

And in those moments when your patience is stretched as thin as you think it can be stretched - you find a little bit more, and you remind yourself that she didn't ask for any of the hard parts of her life.

And when you finally drift off to sleep at the end of each day you hope to one day have even a portion of the courage and strength that this little girl has - and you thank God that you have the blessing of being her mommy.






Monday, July 21, 2014

Swimming and Puzzles - That's All We Do

Hey World,

I don't know about you, but I've been busy.
There was a time I blogged every single day - I had stories to tell and I never ran out of thing to write about.
Life isn't as exciting as it once was that's for sure - but I wouldn't change anything.
Snuggling with Emily every night makes up for every ounce of lost excitement.

Jason has been home for a few weeks and we've enjoyed our warm summer days.
We've done a lot of swimming ... actually, Emily has done a lot of swimming and Jason and I have done a lot of watching.
We're on our third pool of the summer.
The first was too small.
The second was too big.
And the third was just right.

(Actually the second one wouldn't hold the air and we gave up.)


 * * *

Jason and I went to a local production of Les Miserables a few weeks ago.
It was an outdoor theatre and it was perfect.
The sun set as Eponine sang "On My Own" - and really, it was perfect.
I've seen Les Mis on Broadway four or five times, and yet this show was more touching to me than all of the Broadway versions.
I was glad it was dark so that those around me couldn't see how much I cried.

This past weekend Jason, Becca, my mom and I saw Wicked.
I love it and could see it every week and not get tired of it.

Jason's parents drove five hours to be here to watch Emily while we went.
I was so grateful for their willingness to do that for us!

* * *

In all of my spare time (which is usually from the hours of 11:00pm - 2:00am) I redid one of our bathrooms.




I love how it turned out.
A neighbor of mine does finish work and when I told him that I wanted wrap around shelves he was more than happy to make them for me.
It's nice to know talented people.

* * *

I have a lot to update where our little lady is concerned but I'll save that for another day.
She's well and she's happy.
And she's two weeks away from turning three!
Where did the time go?!


Monday, July 7, 2014

I'm Feeling Lighter


We went hiking tonight.
It was the first time I've been hiking in a long time.
A really long time.
Truthfully, I was nervous to go because I was sure I would die.

In my other life I hiked three or four times a week, and I've missed it so much.

Tonight reminded me that I need the mountains...I think my soul needs the mountains.

I won't wait so long to go hiking again.

Emily sang the entire way up the mountain - there is nothing sweeter than Emily singing.

And there is nowhere more beautiful than where we live.












Monday, June 23, 2014

Simple Reminders

One night last week I stopped at a new park I had seen on the drive home the day before.
In our book, the more slides a park has, the better it is.
This park didn't disappoint and Emily was in heaven.

There were a lot of little kids playing, and one little boy, who was maybe six years old, took an interest in Emily.
After several attempts at talking to her, and only getting little squeaks and finger pointing from her, he turned to me and said, "She's a shy little one isn't she?"

I explained that Emily wasn't shy - she just couldn't talk.

"Really?  She can't say anything?"

"She can say words with sign language," I said, and then asked if he knew what sign language was.
He said he did and we left it at that.

A few minutes later Emily's shoe fell off and the little boy jumped down from where they were playing and got her shoe, and gave it back to her.

Emily made the sign for thank you and the boy looked at me with a question on his face.

"That's 'thank you' in sign language," I told him.

"I had no idea," he said.  He sounded like such a little grown up.

I could tell he was thinking about it for a minute and then he said, "Gracias.  That's thank you in Spanish.  I'm learning a language just like she is."

I immediately got a little teary eyed at the innocence and compassion of this little man.

He wanted nothing more than to relate somehow to Emily - to understand her.
And in his way he did just that.
He took her differences and handled them perfectly, and made it so that there was no difference at all...they were two little kids playing together, both of them learning a language that would allow them to communicate.

In that moment I hoped with all of my heart that people would always show my sweet Emily that much love, and I was reminded of the need there is for me to also extend that same love to everyone I come in contact with.

We should all spend more time at the park...that's the moral of the story.