Tuesday, March 17, 2015

An Update On All Things Medical

And boy howdy is it an update.

We've been busy ... running to and from the hospital, and other doctor appointments ... and we've learned a lot and added some things to our plate.  (Our plate was pretty full before so it will be interesting to see how we get it all done.)

Em had an MRI of her heart a few weeks ago and it told us a lot.  As a little refresher, I'll explain Em's heart just a bit.  One of the defects she has is called pulmonary atresia.  Basically it means that her pulmonary valve didn't develop.  When she was a baby her surgeon put in a temporary valve made out of gortex, but it is long gone.

Because of the missing valve, the blood flow to her lungs leaks back into her right ventricle, causing it to enlarge.  We have an MRI once a year to measure the size of the right ventricle, as it is that that will determine when surgery will be to put in an artificial valve.

For Emily's age a normal size for the ventricle is 115.  Em's is measuring 137.  They will do surgery when it's about 160.  Assuming her heart enlarges at the same pace, we have about a year before her next open heart surgery.  We've always known she would need another surgery, and that didn't come as a surprise.

Jason and I talk often about how in some ways we wish they would just do the surgery and get it over with,  so that we no longer have to play the wait and see game.  However, the longer we wait, the longer we will have before Emily will need her next surgery after the valve replacement.

Em's heart can't be fixed - everything that is done is simply a way to make do with what we have.

The cardiologist told us that they saw an aneurysm on Emily's heart that they hadn't noticed before.  He had never seen this before, and wasn't sure about the best way to proceed.  He and his co-workers met together and decided that for now, it doesn't add any additional risk, and so they are just going to watch it.  We will have more frequent visits with the cardiologist, and will just wait until Emily shows signs that her heart is getting weaker.

Before and after her MRI

Over a year ago we met with a team of doctors who deal with cranio-facial issues.  Emily has a cleft in her soft palate and we met with them to discuss our options where the palate is concerned.  They didn't want us to consider surgery until she could speak enough that they could listen and hear how her cleft palate was affecting her speech.

We met with them last week, and they are confident now that Em's current speech issues are 100% a result of the palate.  We met with four different doctors, and all of them believe that surgery will be Emily's best option, but they still want to wait.  Every sound that Emily makes is made through her nose, and they want her to be able to say a hard d and b sound before they do surgery.  With a scope they can watch her make those sounds and from that can determine the best surgery option.  Apparently there are four ways to repair the palate and they just want to make sure they choose the best way for Emily.

Emily has had speech therapy her whole life through the state but I am currently looking to get her into a program that has people experienced with cleft palate issues, so that her therapy can be tailored towards that.  Initially we were told that our insurance wouldn't cover speech therapy and we were really concerned about what we were going to do because each appointment costs $250 and for a few months Emily will need weekly therapy.  However, I called the insurance company and after explaining Emily's situation they told me that they would cover most of her therapy.  I felt like I had won a small battle.

The ENT we met with suggested we get a sleep study done to make sure that Emily doesn't have sleep apnea, as that could also determine how they proceed with the surgery so I am waiting for a call back to schedule that test.

They tested Em's hearing and although she did pretty well, she failed a portion of the test.  It's common with her syndrome to have fluid issues with the ears, and the portion she failed tells us that Em does have fluid.  The ENT and audiologist were surprised that Emily hasn't had more ear infections than she's had.

We've scheduled surgery at the end of the month to put tubes in Em's ears.  We want to give her the best possible chance to hear sounds correctly, as that will help her with her speech.

So we'll do tubes, have a sleep study done, and do 6-8 months of speech therapy and then at that point we will meet with the doctors and decide from there when to fix Emily's palate.

To say that I'm grateful for a job that provides health insurance would be a huge understatement.

Emily has a pretty healthy fear of all things medical, and it's often more than I can handle to have to put her through even something as routine as a shot.  I'm so grateful that Jason is usually there to help us both through the hard parts.

My girl shows me every day what it means to have strength.
She loves life with her whole heart, and it's my hope that I can always be there to fill her life with as much love as I possibly can.

Tuesday, March 3, 2015

Life Lately

One of us, or all of us at the same time, has been sick since the last time I posted.
We're really sick of sick.

One lousy case of the 24 hour yuck and a back that was thrown out - that was Jason.

One horrible bout of debilitating vertigo, an order to stay in bed to avoid pneumonia, two plus weeks of feeling kind of crummy - that was me.

And weeks and weeks of illness, some of it undefined - that's our girl.
It's getting old - it got old a long time ago.

She's had a cold for forever, but for the last twelve days she's had a consistent fever that we can't figure out.  Her temperature ranges from 100-103 ... and when it's above 101 she's miserable.  On top of that, a chest x-ray shows that she's got the beginning phase of pneumonia.  We had blood work done yesterday, and so far everything looks normal.

If she hasn't improved by Thursday, we have to take her back in for another round of tests.

She's missed two of the last three weeks of school, and at this point we're not sure when we will be able to take her back.  Honestly, we're not sure if we want to take her back.  School is about the only place she's exposed to germs, and those germs have not been our friends this winter.

In spite of it not feeling well, Emily is pure joy.  I know I say that regularly, or as regularly as I post, but it's true.

Emily stayed home with Jason today and I went to work.
When I got home tonight Em and Jason were resting on our bed.
Jason was watching the news, and Em was laying next to him watching something on the iPad.
I went in and laid down next to Em and although she looked at me out of the corner of her eye, she didn't say anything.

It was a few minutes later when her show ended and she basically threw the iPad at Jason and then threw herself into my arms and said, "Hi!"  She snuggled with me for for a few minutes and told me all about her day.

We've spent a lot of time snuggling the last several weeks, and Jason and I enjoy every minute.

We recently cut Em's hair, and every single person who sees her, stranger or not, comments on it.

I'll post my favorite pictures of Em from the last month, and then I'll try to post again before the fourth of July.

And as a ps.  If you want to follow me on Instagram or Facebook (where I post a lot more frequently) you can find me at @elimysmommy or send me a friend request on FB.

Wednesday, January 21, 2015

Growing Pains

Jason called me last night with 'good news'.  
He had been in a meeting with his boss and co-workers and they had discussed an upcoming vacation his boss is hosting.
We are going to Steamboat Springs, Colorado and we'll spend a few days playing in the snow.
What will probably happen is that Jason and his co-workers will spend a few days playing in the snow and Emily and I will stay warm and cozy inside.  

Jason's boss told Jason that he was planning on hiring a babysitter for Emily for an evening so that we could all go out to eat.  (Emily will be the only little one there.)
Jason was thrilled and couldn't wait to tell me.  
(That was the good news.)

He then told me that we were staying across the street from a spa and he would watch Emily one day while I went to the spa.

I was quiet for a minute and then said, "Do you not know me at all?"

I probably wouldn't go to a spa even if someone paid me (unless it was just for a pedicure...and Jason may talk me into that) ... but I would never leave Emily with someone she didn't know no matter how much someone paid me.

Jason explained that the babysitter was older and more mature, and that his boss trusted her completely, and that I would have nothing to worry about.  

"It's not at all about the babysitter," I said, "but everything about Emily, and I won't leave her alone."

And here is where this mommy's heart is tender to the point of having it be too much.

Other than me, there are two people who would say confidently that they can understand Emily when she talks: my sister Becca and Jason.  And if you were to ask them they would tell you that they understand less than I understand, and there are times when even I don't have a clue what she's saying.  I will ask her to say it again over and over again, and she will, patiently, until I figure it out.  

When she's with me and she's out of her element, or if we are with people she doesn't know, she goes mostly silent, or she'll stop using her words...meaning that instead of trying to articulate, she'll keep her mouth closed and hum what she's saying.  There are times I understand the hum more than I understand her words.  

She's about as comfortable at my parent's house as she is at our house, but it takes a lot to get her to talk.
She's comfortable in her church class (sometimes), but she is mostly quiet.
She's been in school for almost 5 months, is still a little hesitant about it, and never talks.  Her teacher was excited that Emily smiled at her the other day.

I went to school with Emily for a day to see if I could help her break out of her shell a little bit.  I don't know that I accomplished that, but now that I know what she does every day, I can engage with her more about school.  I can ask about her classmates by name, and I can ask about specific activities. 

(On the chance that you really want to tell me to teach her sign language...which I'm doing...keep this in mind: Emily's three year old version of sign language is almost guaranteed to be different that what an adult's version of sign language would be, and even if it were the same, you would have to have someone on the other end who actually knows sign language.)

I recently played a video of Emily counting from 1-20 for Em's feeding therapist, who is also a speech therapist.  (We can't see her in that capacity because our insurance won't cover it.) I asked her opinion about Emily's speech: is it typical as far as development goes in regards to a speech delay.

In her professional opinion she doesn't think that Em's speech will improve much more than where she's at right now, without surgery to repair her cleft palate.  

(We've known all along that she has a cleft palate, but a lot of kids learn to talk in spite of it, and we've been waiting for Em's speech to develop enough to know what we were dealing with.)

I scheduled an appointment with the cranio-facial team at our children's hospital and we'll go in a couple of weeks.  

With ALL of that said...

The amount of anxiety I feel when I leave Emily would surprise you.  
There are days where I still cry as I drive away from Em's school.
If she shows the slightest hesitation or concern about being somewhere, my mommy heart wants to scoop her up and never let her go.
The balance between protecting her and letting her spread her wings is a hard thing for me to find.
Knowing that if Jason and I aren't with her, Emily is mostly helpless...I don't know that there's been anything harder for me to deal with so far in her little life.

I recently heard a news report about a three year old who was in his mom's car when it was stolen.  When the thief realized that there was a child in the back of the car he abandoned the car and the child.  The mom had left her cell phone in the car and when the police called it the three year old was able to answer it, which led to the police being able to find him.

The same night I heard that story I had a nightmare about the same thing happening to Emily, only she wasn't able to answer the phone.  I woke up with my heart racing.  

(It's no wonder my hair is going gray.)

Em's inability to communicate won't be forever, and for that I'm grateful.

But until then...

If I turn down an offer of babysitting please don't take it personally.  Please understand that I'm doing what I can to make certain that Emily has the most emotionally safe environment that she can. 

There are so many aspects of Em's life that I have no control over - that I can do nothing about - but when she's with me my sweet girl talks her little heart out, and I can't take that away from her.  

Thursday, January 15, 2015

It Might Lead To More Blogging

I lost the only 'my space' I had when we decorated Emily's bedroom before she was born.
That's not a complaint.
I would much prefer that space be Em's than mine.

But I've floated from space to space since then.
I've purchased two different chairs, thinking that the chair could be my space.
I've tried using Jason's desk, the kitchen table, sitting on my bed, and just sitting on the couch.

I've just wanted a corner to be mine, where I can read, study, and write.

I've had similar angst about my office at work.
The house our offices are in isn't level.
It slants, and the worst of that slant happens to be the only place where I can put my desk.
So for however many hours I'm sitting at my desk each day, I'm leaning to the west, and it makes me crazy.
To add to that, the desk I've been using for the last four years hasn't been ideal.
It's a kitchen table I bought at a thrift store.  I painted it a cute color, but because of its style I've never been able to put my legs all the way underneath it and I haven't been able to sit at my desk comfortably.

I recently found a desk for sale on a yard sale page and fell in love with it.  It's a beautiful color and it has drawers! (Something that my kitchen table turned desk didn't have.)

I measured the space at work where my desk goes and knew it would fit.  I sent Jason to pick it up for me and he helped me set it up.

I lasted about two months with that desk before I admitted to myself that it is a lousy desk for what I needed, in spite of how beautiful I think it is.
It's too small - there is not nearly enough surface space, and my chair fit worse under that desk than it ever did under my table.

One afternoon Em and I went to the office supply store to check out their desks.  We found a desk that fit all of my criteria: it fit in my smallish space, it had plenty of surface space, it had drawers, and it had enough leg room to fit my chair.

I bought it and spent the afternoon with my sister and I putting it together.
(We asked our brother-in-law for help when it came to the tricky hardware parts.)

When my brother helped me move the desk into my office he asked what I was going to do with the other desk.

"I'll probably sell it," I said.  "I don't need two desks."

Jason had another suggestion:

And just like that I have a space to call my own.
As silly as it seems, that little space makes me such a happy girl.

If only I could do something about the slanting office...

Monday, January 5, 2015

In Case You Want To Know, We Love Downton Abbey

I've been trying to dig out from the chaos of the last few weeks...but as I go it feels like I'm digging out from the last several years.

I think I'm going to need a bigger shovel.

I have a plan for this little place of mine ... and I hope that it will help me to be more consistent in writing about our life. 

All is well in our world.  Em is happy and healthy.  Jason is gearing up for another busy work season.   And I'm trying to figure out a way to accomplish both the things that need to be done and the things that I would love to do just for fun.

Here, I'll show you an example:

I started this cross stitch years ago.  I don't think I've done more than 100 stitches on it since Em was born.
I have one New Year's resolution and it's to finish this.  

Wish me luck.  

Here are some pictures from Christmas Day ... and our first snowfall.
Our girl was so happy.

Sunday, December 14, 2014

Our Current Favorite Book

...and I would choose her over and over and over again.  

Friday, December 5, 2014

A Love Story And A Legacy

My mom had two sets of parents, did you know?

It's a much longer story than I'll write tonight, but here is what you need to know for the story I am going to write tonight:

My mom had a loving father and mother - they were in a car accident and my mom's mother died.
My mom was just 15 months old.
My mom's father remarried - he married his first wife's sister.
Before my mom's mother was killed she said to her sister-in-law "If anything happens to me while we're gone I want you to raise Valerie."

My mom was raised by her aunt and her uncle, and remained close to her family.

It's a beautiful story of love and sacrifice and in the end it resulted in my mom having three loving mothers, and two doting fathers.

The two families lived in the same town and were close to each other and to their friends.
My grandparents had two friends, sisters.  I met one of the sisters and grew to love her over the years.
The mother who raised my mom had Alzheimer's in her last years, and stopped speaking.  On occasion she would call out one name: Euleda.  Euleda was one of the two sisters my grandparents were friends with.  Euleda named one of her daughters after my mom's mother who passed away.

That's how close they were.

My grandpas had a mutual friend named Van.  Van, my grandparents, and the two sisters all lived in the same town before they were each married, dated each other even, and remained friends their entire lives.

Van eventually married the other of the two sisters: Audrey.

It was shortly after Jason and I got engaged that I wrote this on my blog:

"I imagine this scene in heaven:

One day my grandpa would have said to his brother-in-law (my other grandpa) 'Gayle, what are we going to do with our granddaughter?  We have to find a way to help her out.  She's old and she needs to get married.'  And my grandpas probably would have had no clue how to help me.

After a few minutes of talking about it Van would have joined his two friends.

My Grandpa Gayle - who was very astute - would have noticed that Van looked distraught.

'Van,' he would have asked, 'what troubles you?'

And Van would have said, "I have this grandson that I'm worried about.  He has a lovely fireplace and no one to build a fire for.'

And the three grandpas would have sighed...and then in unison they probably would have had a moment of clarity.

Someday I'd like to know how long our three grandpas have been plotting - and I would like to give them all a really big hug."

Van and Audrey, my grandparents' greatest friends, are Jason's grandparents.

And the minute I met Audrey I felt a kinship with her - a connection that went beyond the fact that she was my then fiancee's grandma.

My grandparents were my favorite people - they had my entire heart - and meeting their dear friend put her in the same place in my heart.

Our roots were connected long before Jason and I met.
Today we took Audrey home to the place those roots were first planted, and we laid her to rest next to her husband.

As I stood in that cemetery and thought about my own beloved grandparents who where were laid to rest just a few miles north of Audrey and Van, I felt peace.  And in my mind I whispered to all of them that I loved them.

Those seven people - those grandparents we've loved and honored - they've left us a beautiful legacy, and until we meet them again, Jason and I will do all that we can to continue that legacy.