The Cry That Shook OUR World

*Play song, "It's Us Against the World" with this post

It's hard to shake us, or get us down these days. We've developed skins of tough hide through our experiences. But this did it.... it did it good.

I have been very surprised and pleased with myself at how I take news each and every time I hear those words.... "I think she'll need surgery to correct this". I have only (that I can remember) broken down twice over it... of course the first time ever I'd heard those words, and then of course that lonely feeling day in March of 2010.... only twice, not too bad when there's been numerous times it's been said. Until today. 

I have learned now to never again utter the words, "we're done"... because then it just simply will never happen. I was told a few weeks ago that Em would be needing some more work on her feet... this I could take though, even though it was the first one to shatter those words of, "we're done". Perhaps because I knew in the back of my mind that there would always be work to be done on those poor crooked feet... and perhaps it was Dr. Stotts, who always seems to make me feel at ease when he delivers the news of impending surgery. 

Today was different. Maybe it's because these doctors are more clinical with the way they deliver news, and not really with much compassion...  not that there's really anything wrong with that... well sometimes there is I suppose. But, they are all great doctors that we respect, and in fact most doctors are this way. I have come to learn that Dr. Stotts is a rare treasure, a one of a kind for sure and we are grateful for him and the way he cares about our daughter. 

It is not a "for sure" thing yet, but the fact that not one, not even two, but three doctors all without consulting one another came to the same conclusion- Em will need some reconstruction in her upper jaw and face. Not quite sure how anyone could take this news, but after the third time I heard it today, I felt a lump rising in my throat. I gave it my all to swallow it away, as well as keep back the tears that were threatening to spill over and blow my cover completely.... you know, that "tough hide" cover? The mom who smiles and nods and is accepting of all things.... I like to pretend.

This is exactly as unpleasant as it sounds. Not only will she be having jaw widening done, but most likely some work behind her nose, and other facial bones.... this will not be an easy procedure, and most likely very, very painful. Well, why don't you just rip my heart out and stomp on it? Because that I'm sure would be less painful than processing this information.

I did finally let that lump and those tears take over when we finally reached the car. I have not cried like that in I don't even know how long. The kind of sobs that become you... shaking, catching breath, just letting go. And I had to keep reminding myself that it was ok, because by letting go I could then begin the process of accepting. I'm not there yet though, and I don't know how long it will be. 

We will have another sleep study to determine how bad this tiny nose and jaw are affecting Emarie's breathing.... sleeping.... quality of life. After that, it is likely more tests will be done under anesthesia to pin point all the "problem" areas that will need to be "fixed". After that is when they will decide whether this surgery is absolutely necessary this soon.... but let's face it, it's Em and us... it's going to happen. We did know this was going to happen, just didn't think it was coming for several years. That was actually another big concern- if we do this now, is there a chance she's going to need it again say in those several years? And the answer to that was, more than likely...... *sigh* When will this girl just get to be a kid?? I hate this, I really do.... and I'm tired of acting like I don't anymore. Sadly, if it shows this needs to be done, then there's no way around it. Her oxygen levels look ok most of the time, but that means her heart and other organs are overworking, and that's not good. So we will do it..... but that doesn't mean we have to like it.

And that's ok. 

Our Photography Class

*Play song, "Sunday Morning" with this post

Steve and I took a 5 week photography class that just finished up a couple weeks ago. It was just a community course to teach those who buy DSLR cameras how to use them. We of course read our owner's manuals, see things online and we both took our share of photography courses in high school and college... but still, there is always things to learn! Especially with all the new technology coming to light!

We had assignments each week when we learned something new, they weren't required, but we got rewarded if we turned them in (by email) each week. Our instructor showed them in slideshows at the beginning of class each week.... sadly we only made it on time for one of these though... so we never really got to hear what he had to say about our pictures (it was tough getting Em to a babysitter and then to the class on time at 6:30 when Steve wouldn't get home from work until after 5:45 each time! And try to eat dinner before too!). 

All in all, we had a lot of fun, and here's a few examples of the photos we captured for each week's assignment. Oh and it is important to know that most of these photos were also edited with Photoshop, but were not turned in this way!

Week 1- Shutter Speed

Alisha's Pictures

Fast shutter. Set at 1/2000, camera was on full manual, but focus was automatic

 This is the panning shot. Shutter set at 1/25, and tracked the movement as she was pushed by her daddy. We do have an image stabilization lens and I'm not sure how well a shot like this would work without it!

Slow shutter shot. Shutter set at 15 seconds. This was taken using a tripod (not possible without the camera sitting on something stable), 2 second delay as well, so that me pushing the button didn't cause any shake. This is taken on the overpass of Carterville Road crossing over University Parkway (facing South), it was around 6 pm (before DL savings).

Steve's Pictures

Shutter set at 1/2500

Shutter set at 20 seconds

Week 2- Aperture

Alisha's Pictures

 Shallow Focus or Large Aperture. F/1.4 (largest opening that our portrait lens has, largest that most lenses go), automatic focus, automatic shutter.

Small Aperture, camera set at F/22, automatic focus and shutter, custom white balance. Taken up Provo Canyon, past Sundance, right after the checkpoint (at the point where they stop plowing in winter). 

Steve's Pictures

Shallow focus of Steve's, set at f/1.4

f/22

Week 3- Perspective

Only trick here is that I was holding a little miniature Prius in my hand right in front of the camera.


And Steve's picture

And yes that's my leg...


These were our rewards for turning in our assignments :) Between the 2 of us, I'd say it was around $50 worth of stuff for free! Almost made one class free!

That's 4 8x10 high quality prints and 2 photo books!

All in all, we had a lot of fun practicing and can't wait to go to the intermediate class! 

Happy Birthday to the Man of the House!

*Play song, "Undeniable" with this post (because Steve really likes Mat Kearney)

So Steve celebrated his.... **rd birthday this month (on the 11th specifically) *wink, wink...

We couldn't celebrate on the actual day because we were crazy busy with family functions (more on that in a following post).... so we settled on the next weekend (St. Patrick's Day actually), and we decided on Park City :) It was pretty wet and rainy that Saturday, but at least the weather was still warm. We tromped around the outlets first looking for something specific, and all we managed to get was really wet! But we still had fun together! 

Steve's birthday present was a nice external flash to go on our new camera, and a pretty nice one might I add! It can communicate with the camera without even being attached! So that means you can set it somewhere to make for a more natural look in photos, man I love technology! :) 

In case anyone cares, it is a 430 EX II. He also got some lens filters as well. So of course in true fashion, he wanted to try out his new toys.... and what better than our overly used model?? ;) 

 This is one of Utah's "fake beaches" lol

 It was starting to get pretty windy at this point, and I kept imagining that little flash (that was placed on the ground to Em's left) to blow up into the water! Thankfully it stayed put though!

This was Steve's birthday photo taken by yours truly! This was as we were waiting to go to dinner at Ruth Chris Steak House.... you may remember (if you follow me on Instagram or Facebook) me posting that one of our Chromosome 18 families had sent us some gifts... well a very generous gift card to Ruth Chris was one of those gifts! Thanks to this family once again, you guys brought tears to our eyes when we opened it and made for an extremely nice birthday dinner for Steve!

Forgot to take pictures of the food at the restaurant, but did remember to get a couple shots of the leftovers we took home! 

This was my meal, it started out as 2 petite fillets (with a blue cheese crust) and 8 grilled shrimp. Don't have a picture of Steve's, but he got a Ribeye steak and we both shared a wedge salad and some au gratin potatoes.... everything was divine! 

They actually gave us a free dessert to honor Steve's birthday, and they let you choose anything on their menu! We were so full, that we decided it would be best to choose something we could take home.... cheesecake!

And it was huge! Enough to give us four desserts (2 each)!

Here's some more pictures from dinner (this one courtesy of Em's iPhone)

 Giving daddy her card.... that she picked out... and helped sign!

 And then she insisted on giving him my card too! Good thing I love her ;)

 Steve had set them over to the side of the table and Em kept handing them to him over and over..... 

 She thought this was hilarious! 

 Coloring

More from the iPhone and Instagram

Em mid hug (she was giving them out in crazy Em fashion that night!)

And Em all bundled up in her vintage coat! Saved this coat from being thrown away forever my first year working at the preschool (when Steve and I had been married just a few months and kids were a very far off thought!), so it got put away in the basement, surfaced again when we moved to Provo and I was barely pregnant, didn't know if I was having a girl or boy yet and didn't know how long it would be to fit this child.... so it got put away again! Sadly it didn't resurface until we barely moved again and lucky enough it barely fits Em (it is a 2T), at least she got to wear it in our crazy start to spring! Funny enough, when I posted a picture of her in it on FB, one of the teachers recognized it as belonging to one of her girls! So I was right in thinking that it was late 70's- early 80's! Very cool and I hope another cute girl will get to wear it someday! (don't get any ideas though, I'm NOT pregnant!)

Anyway, that's it for this year's birthday! We love you Steve and are glad we get to celebrate you! 

The Unspoken Struggle

*Play song, "Your Love Means Everything" with this post

This post will take you into some of the depths of struggle that we face as special need's parents. If you have a newborn, you can relate on a small level, but at night, I feel like we've had a newborn for four years. However, if you have a child that is either nonverbal or limitedly verbal, then you really have an idea of what this post is about.

Although Em has quite the vocabulary range, she is classified in the medical world as "nonverbal". Mostly because she is so selective with when and how she uses language (even though when she does, she mostly uses it correctly). But she goes in lulls sometimes, long lulls.... and right now she's been in the longest lull she's ever been in. However, we learned very early to never use what the medical world says about our daughter as the stone clad. Doesn't mean I still don't get down.... that I still don't have hard times.... hard nights. 

Last night like so many nights, Em woke up several times in distress. But last night was actually worse, much worse. There was something wrong. Seriously wrong. And I had no clue what it was. And as I did what I could to console her, I felt defeated. Utterly defeated. A complete failure as a mother. This was more than just my daughter not being able to tell me what's wrong, but the fact that I'm her mother and all society tells me that I should know what's wrong without her telling me. Steve is different in these situations, and I sometimes wish desperately that I could be more like him. He always has the right touch, the right soothe in his voice, he is always able to comfort her when I am not. We are lucky he is here. I gave her motrin and benadryl, and her daddy rubbed her back until she fell asleep again.

Still just wish I could be more for her. But, I'll just keep doing what I know, because that's all that I can.... and just hope that it will be enough.

And What Was Life Like Without a Spica This Time Around??

*Play song, "You Make Me Smile" for this post

In a phrase..... SOoooooo much better!!! So much so, that I'm really glad we didn't know about this option the first time around, since I'm sure I would have put up a stink that we had to have the spica! 

So, we finally had our follow-up post surgery last Tuesday. Of course for the past couple of weeks in Utah we've had temps in the 50's and even 60's sometimes, and just our luck the day it finally started to snow was the day of our appointment! Luckily we didn't have to go all the way to Primary, just to Riverton, and conditions for driving were really not that bad.

We got back into x-ray the moment we checked in, and they only needed one, which is always a good sign! Then it was time to wait for Dr. Stotts, and when he came in, he stated that he had some good news.... but of course if there's good news, there's usually bad news with it. And sure enough, this is what he said, "The good news is, her hips look great!..... The bad news, is that I'm pretty concerned about her feet again." *heart sinks..... breath catches..... He means another surgery, right? I should learn to eat my words! Anytime I say we're done with surgeries, they have to add another.... so lesson learned, I will not be saying that anymore! He didn't think he wanted to do anything immediately.... in fact his words were, "Let's make sure her hips won't surprise us again before we think about anything else!".... man does he know my girl!

But like I said....

This

Is way, way, way better than

This

The one part we really hated with having the wedge, was

This

Yes this... using all the seatbelts in the back seat.... having to pull them taught and hold it on the one end while trying to loop it completely through all the right spots.... killer on the back (I cried of back pain almost every night I put her in and out of the car!), and never did it take less than 25 minutes! So, I guess this was the diaper change this time (that was the killer with the spica).

Almost made me miss this bad boy!

(her special spica car seat)

So we were a "go ahead" for weaning of the good ole wedge. Slowly, not all at once, and that was ok with us, since it really has been so good to us! Thanks for not being a "spica" wedge.... we really, really, really appreciate that! Kinda funny what you learn to appreciate when you've seen things we have in these past four years! 

It's been a long journey on these poor hips! And I sure hope for my amazing girl's sake that we are complete..... never mind, biting my tongue here! 

I know we have video of her in the Pavlik harness (what she wore when they first discovered her hip displaysia), but since I can't seem to find a picture, you can see what that looks like here. She had to wear this for only about a month, because x-rays showed that it wasn't enough to help....

So, when that didn't work, it was then the brace

Tiny little thing, probably about 7 pounds at 5 1/2 months! She had to wear this about 23 hours a day, for about 4 months.

Then of course her extensive leg casting (which when we started this, Dr. Stotts thought it would be cruel for her to have to wear the brace too! Especially since the weight of the casts would be pretty good at holding her hips in the right position). 

She wore these off and on the next 4 months (with weekly cast changes at Primary) until her foot surgery in September of 2008. X-rays after her foot surgery follow-up showed that her hips were in the socket where they wanted, and her doctor didn't think we'd need to worry about it anymore. But a little over a year later is when her PT and I noticed a discrepancy between her legs (like almost an inch difference!).... which since I know she wasn't born with that, it was coming from one of two options, her hips or her spine. Hips was more likely and of course the better fix! It took a lot of convincing on my part for them to even bring her in to check, they basically were just humoring me! But low and behold, I was right....

So that was when she needed the surgery in 2010

To now :)

But now matter what life throws our way.....

 we must always remember to...

Took this picture as a project in our photo class, using shutter speed.... if you haven't seen it already (it is all over facebook, been quite amazing to see actually)