*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!
*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.
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....
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)
Today marks what would be my little sister's 22nd birthday. In other words her "Golden Birthday". I know I talk a lot about her on this blog, so this time I'll just share a revamped version of the picture slideshow Steve and I did a few years ago, with new pictures added. *Please keep in mind that cameras were not great back then, and we did the best we could with what we had...
Still would like to use more pictures that we've found to fill in the holes. As well as "clean-up" the ones we have already and do some better editing.
Balloon Emarie and I got for aunt Breanne, that sadly was gone the next day :( All the surrounding graves still had all their stuff, so I know it wasn't the grounds keepers. Never understood how someone could take something off of a four year old's grave.... especially with her beautiful picture looking right at you as you do.
February is kind of a hard month. I didn't post earlier on this, but I wanted to share this video in honor of my cousin Brooks's 9th "Angel Day" (Thanks to Camille for a nicer name for this day)
One of the hardest things I ever had to do was go through these videos just days after the accident. A good friend of my aunt and uncle is who made this video, and what an amazing gift it was.
And if you don't know by now.... change the view from 320p to 720 HD and full screen for best viewing!
I never really liked Valentine's Day growing up. When I was younger, it was a day of embarrassment.... you know? Wanting to give a Valentine to somebody you had a crush on without risking rejection or humiliation! In high school it was even worse, because even if you had a boyfriend... well, let's just say that high school boys are not always smart at remembering or doing things right!
Thanks to my husband though, he changed my feelings on the day. He has always been good to spoil and surprise me each year :) And it isn't always elaborate, but it is always special (like last year)!
But this year he did not fail to impress, and I have to say, it was a bit elaborate :)
He had asked a few weeks ago if he thought I could get a babysitter for Em on V-day, which was a bit surprising since we don't usually like to go out on Valentine's because it's always crazy! But he assured me that it was already taken care of and we wouldn't have to worry about a long wait..... hmmm. The next day he told me that he'd made arrangements for Em and that I would have to wait for the day to find out what we were doing..... A few days before though, I at least asked him what I should wear, since a girl's got to be prepared! He told me that I should probably dress nice like I was going to a wedding reception.... I guess I should have seen this as a hint, but I didn't!
So, finally the day came, and I had worked tirelessly ;) to put this together the night before
Trail of hearts outside the bedroom door (first thing he saw when he got up that morning)
Leading all the way to the table where his present sat... it was a new iPod dock/clock radio since our old one is now "slow" (at least 9 mins slow!) and won't charge the newer iPods
I cut out 8 hearts to represent the amount of Valentine's Steve and I have shared as a married couple. I also wrote on each eight reasons that I love him.... of course I love him for a million and one, but this was fun! And no, this isn't something I found on Pinterest, but something I thought up all by myself that night when I looked at all the wrapping paper I would be throwing away ;)
I also made breakfast that morning, cinnamon roll pancakes, source here (though my modification would be to add 1-2 tablespoons of milk to the cinnamon mixture if you don't want to explode your poor honey bear trying to squeeze it out!) and bacon! It was pretty good! Oh yeah, and I also finally defrosted the ice maker that night (hadn't done it since the power had been cut on our fridge while we were in Sedona), and trust me this was a good gift!
And then we went about our regular weekly schedule, school, work, etc. And after we returned home, I commenced getting ready, and while that was happening Steve informed me that I was getting some FB notifications and brought the phone into me.... and I saw this:
With the caption, "How do you feel about prime rib and shrimp cocktail?"
This dinner was held at a reception center in Payson.... so that's why there was need for dressing like going to a wedding ;) The grounds were gorgeous, just wish it had been light enough to get some pictures.... next time though! ;) The food was to die for! And we met some nice people! That was actually the funny part- when we got there and sat at our table (we were a little early), Steve was realizing we'd have to share a table with people we didn't know (they were set for 8, so 4 couples).... those of you that don't know him real well... well, he's a little shy, quite the opposite of me! But hey, you know what they say? Opposites attract! But we did have fun getting to know the other couples we sat with and it was an all around pleasant evening! The 12 year old boy playing the piano was a wonder! He normally plays for the Chef's Table in Orem and will be touring in Europe in the summer..... WOW!
Picture of us at dinner.... not the best, but that's what happens when you take a self picture!
It was a five course dinner- first a really good salad and rolls, then shrimp cocktail, then the 2 course entree, raspberry chicken and prime rib with glazed baby carrots and garlic mashed potatoes. And of course an amazing dessert plate! 4 different desserts to share with your love.... most of which I don't know the name of! Too much to finish, so we were able to bring it home and we're still working on the tuxedo cake with chocolate gnash!
This cake started out huge!
When we came home, we finished off the night watching the latest in the Twilight saga, Breaking Dawn.... part 1 (Steve was thrilled ;) It was a wonderfully perfect evening! Thanks to Steve's brother Cory for watching Em for us!
Ah and Em, I should also mention that she as well makes Valentine's a lot more fun for me! We had a lot of fun making her Valentine's for school this year thanks to Pinterest!
Though I did opt to do them a little differently since the ones shown on Pinterest were 4x6 prints and I thought that might look a bit tacky for her to take Valentines that would about 3x's the size of her classmates! So I used the photo site from Walmart and chose their kid's valentine cut aparts and ended up paying $0.28 for 3.... not much more than your run of the mill box of Valentine's you'd get from the store, and SOo much cuter! What do you think?
I sure know one little guy really loved them!
Yup, that would be Em's alleged boyfriend, "J". He almost gave her her first kiss that day too! And his mom assured me that she's all he talks about and even says he loves her.... ah, puppy love ;) Gotta admit, didn't expect this for my girl.... at least not yet! But he is a cutie, just might have to talk with him about kissing!
Here's a few more pictures from Em's Valentine party at school
Giving her Valentine gift to one of her teachers, Miss Kirsten. Em picked out these darling boxes of chocolate truffles herself!
My cute love bug all ready for her portfolio picture!
Em with a few of the girlies she's really good friends with (all of them entered preschool around the same time last year and stayed in the same class.... it's been good for all of them!).
Em getting ready to receive some Valentines!
At home, before Steve and I left to go out, we gave Em her Valentine gift.... which was some furniture for her dollhouse she got from my dad for Christmas! And boy, the look on her face when I brought them out of their hiding place was just priceless! Wish I'd gotten a picture... but we got pictures later that night before we put her to bed :)
Full dollhouse now! I was able to score the kitchen with Em's birthday money from my grandpa and grandma Wilde.... then she got the bathroom, parent's room and nursery for Valentine's (we're still on the hunt for the Family Room, so if you see one let me know please!), but you gotta have furniture for a dollhouse, right?! Especially for teaching some very important skills! We play with it together everyday, embedding vocabulary, play skills, and life skills while we do! I bet Em is so glad to have a developmental specialist as her mom ;)
I should also mention that she kinda, maybe got this for Valentine's day as well.... wasn't really meant to be a Valentine present, but it came in the mail on V-Day, and isn't it SOo cute?? For those of you who don't know, it is a cuter version of the infinity backpack for her g-tube gear- so it holds the bag of formula, the pump and all the tubing, and is so much more stylish than the ones you can get through the insurance! If you want one, go here to their facebook page :)
And Thursday night her grandma (Steve's mom) embroidered her name on it while she watched her for us so we could go to our photography class (more on that later)!
Isn't she awesome?? She watches our kid for us AND embroiders the backpack, and she even modified a cuter pillowcase for her wedge! Thanks grandma Peters!
And just for fun, here's a little timeline of Em on all the Valentine's that she's been around for :)
2008
A little less than 2 months old
2009
Just shy of 14 months
2010
2 years
2011
3 years
And 2012
4 years (yes that is the same shirt and shoes from last year, new skirt though! Gotta take advantage when your child doesn't grow like others!)
The first week or so in February was filled with catch-up and follow-up appointments for miss Emarie. After all the scariness that followed her recent surgery, I wanted to make sure we were doing everything we could to one, figure out what it was, and two, make sure we don't see it happen again!
Number one on the list was to see her GI specialist, and actually when I talked with them, they thought it would be best for her to have an appointment with the whole dysphagia team. This includes her GI doctor (Dr. Molly O'Gorman), her dietician (Sharlene Coombs NP), and various other OT and speech therapists as well. It's standard for them to do an accurate weight (in other words, naked), and all other measurements to compare her growth. So since we had to strip her down to nothing... she got a hospital gown.... and well, I could have sworn that a children's hospital should have a gown that would come close to fitting her, but well, I was wrong!
Yeah, she looked at me like, "really mom.... really?" It was pretty funny, couldn't stop laughing!
Her stats as it stands:
Weight: 30.6 lbs, 17th percentile
Height: 38", 13th percentile
Head.... well let's just say that still isn't on the charts and probably never will be!
Last year was the first time we'd seen anything on the charts for her! But sadly, she's stayed close to the same in weight since then:
3 year stats:
Weight: 29.5 lbs, 41st percentile!
Height: 35.25", 16th percentile
yeah, this is when she was seen as overweight for the first time ever and we were (for the first time ever) allowed to back off on her calories!
So, it seems she is keeping the same trend. That is to stay the same for a really long time, then grow a whole bunch really fast, and then stay the same again.... pretty common among 18q- kids, and those with growth deficiencies as well. Just wish her dietician would understand this!
We got some referrals to go to an eating clinic though which I was excited about! This girl is finally showing an interest in eating but now because she's not in PEIP anymore, she does not receive any sort of feeding therapy. And she's all done with her cleft surgeries, so we are really wanting to move forward from getting her off a feeding tube! Also got a referral for an allergist.... read on for the reasoning for this.
They also drew some labs at this appointment.... poor kid! After the many, many, many blood draws she endured in the hospital (6 in 2 days, plus 4 IV's placed in that time as well!), she had to do it just a week later! But, she didn't even flinch! Love that about her.... sad as it is, that a four year old finds it so routine, I still am so lucky to have a kid that holds still and gives me the hug afterward!
As of today, we got those results back.... and they weren't what I expected..... at all! The first I was told about was her vitamin levels, which they have been very concerned over in the past! I have been working very hard to keep those vitamins up, and it has payed off! The dietician was especially proud of her vitamin D levels since that is most commonly deficient in most children these days. I had them check her hemoglobin again as well since if there is a problem of her consistently loosing blood, then that should have showed as declining since we left the hospital. But alas, it's the same as it was the last they checked in the hospital.... which is great! But that means we still have no answers to all that went wrong so many weeks ago :/ The surprise however came in her allergy levels.
It's routine to check these every year when you have a child with severe allergies (meaning anaphylaxis to anything). Last we checked, her egg whites were higher than anything (in the 40 range), close second was milk (in the 30 range), with egg yolks at about a 12. And soy at a 5.5. Anything over a 5 is considered a pretty significant allergy and should be excluded from the diet. She also showed slight inclines in a few things, including peanuts, wheat and a few others, but nothing to warrant concern, just something they would watch to make sure it didn't ever go higher.
New levels have most things declining or not scaled at all...... most, but not all. The egg whites has been cut to less than half of what it use to be (which remember this use to be the highest!), and yolks went down as well.... not as much, but it was lower to begin with. So, that means that more than likely she will outgrow her egg allergy all together! And at this point, we don't have to have a panic attack if she is to come in contact with it, it shouldn't cause anaphylaxis anyway..... milk on the other hand, is a completely other story. Milk more than tripled. Which means we have dim hope that she will outgrow it :( This news baffled her dietician who said of both milk and eggs, milk should be the more likely to outgrow..... she is still getting to know how my kid is though.... she is always the exception to everything. They are likening her levels to milk as to what most people are who are allergic to peanuts..... that. is. scary. This has me so anxious. It is no wonder that she reacts just from touching it. Epipens will be with her at all times.... no exceptions. And anyone who is responsible for her care ever, will know how to administer an injection for her.... no exceptions there either.
We will continue to check though.... every year and we will hope, but we won't expect.
Anyway, enough of that. She also had her four year appointment (a little late I know, but things were busy in December, and even busier in January!). Not much different in her stats from the week previous, so that went well.
The common trend though, is that all of her doctors are impressed with her progress! Anyway, we'll continue to have many other clinic and specialist appointments in the following months! Busy life that we lead! ;)
I should also mention that we decided to take Em back to school before her follow-up from her surgery (which will be on the 28th of this month). We figured she'd already missed so much, since she hasn't been since before Christmas break and if her teacher Miss Jamie wasn't comfortable with having her back while still in her wheelchair and wedge... well then no one would! Her son actually goes through a lot of orthopedic surgeries as well. So she is happy and back at school :)
I am a full-time title one preschool teacher, at a preschool for children with special needs. I love my job, but my true passion is being a mom to one very special little girl. Emarie was born in the early morning hours of Christmas Eve 2007. The day she was born changed my life forever... for the better. She was born with a very rare genetic abnormality called 18q deletion syndrome. And we are learning more from her everyday than we ever thought possible. To learn more about Chromosome 18 disorders, visit the Chromosome 18 link under the "Other sites we love" section on the left hand side of the blog. Or you can visit any one of the Chromosome 18 family blogs also listed to the left of the blog!
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