VPI Clinic

Today was Ella's VPI (Velopharyngeal Insufficiency) clinic with the ENT in Sioux Falls.

Velopharyngeal Insufficiency, as best as I can understand it, is a condition where the child has trouble moving or closing the soft palate during speech, causing air to leak into the nasal passage during speech production. Basically, as you speak, your palate moves to the back of your throat and needs to close all the way in order to create the suction needed to make certain sounds. Someone with an insufficiency wouldn't be able to close that gap, causing air leakage into the nasal cavity and consequently hypernasality and speech difficulties. 

To test for this we first had an evaluation with a speech pathologist who met with Ella and listened to her speech, rating each letter she pronounced and determining if what she heard gave her reason to move further with the testing. It did. The next step was a video nasopharyngeal endoscopy where the ENT inserted a scope into Ella's nose that had a camera on the end. We were able to watch her palate on a tv screen and see if it was closing the way it should during speech. It wasn't. 

And so it was determined that Ella does indeed have Velopharyngeal Insufficiency.

There are 2 different treatments of VPI. If the gap is small they can do an injection which would swell the pharyngeal flap in the back of the throat, helping to be able to block off the flow of air during speech. If it's a large gap a more extensive surgery is needed to move tissue into the pharyngeal flap and create a wall of sorts that would assist in decreasing airflow. Ella has the more severe type. 

One of the concerns with this surgery is building up the wall too much, thereby increasing the risk of sleep apnea since she would still need to be able to breathe out of her nose while asleep. In order to decrease this risk a tonsillectomy is required before the VPI surgery. 

So as of right now our plan is this.. Tonsillectomy surgery is scheduled for December 12. At that time the ENT will remove the tonsils and also the tube in her left ear. He will clean out the impacted wax and assess if there is middle ear fluid in her right ear. If there is, he will insert a new set of tubes at that time. Then in February she will go back for the VPI surgery to build up the wall on the pharyngeal flap. She will need to stay a night at the Children's Hospital to monitor her breathing during sleep and make sure the wall isn't too large. After that we will do another hearing test and hopefully be able to determine if hearing aids are necessary. 

I have so many emotions about this diagnosis.

First of all...

SHOCK.
I really wasn't prepared for this. I knew there was a chance she could have VPI, but the only thought I had given it was IF she did have it, it would most definitely be the less severe one, requiring a simple injection which she would need to be sedated for, but would work out well since we need to get that tube out of her left ear anyways.. If there was a teensy thought in my brain that she would need the more extensive surgery, I had NO IDEA she would have to have her tonsils removed in a separate surgery only weeks earlier. That was a bit of a blow..

RELIEF.
Relief that maybe we've found an answer. A reason as to why her speech isn't progressing the way we want it to. As much as we don't want to have to put her through surgeries, it's nice to have something tangible that can be "fixed" instead of the constant "well... we don't really know why" we too often get.

FEAR.
Obviously. Even though these aren't particularly risky surgeries, any surgery comes with a chance of complications and that is only multiplied when you throw in genetic syndromes and kids who like to defy every rule in the book. I've also learned that any sickness with Ella is 10x worse than the other kids and I remember the last tonsillectomy recovery to be pretty darn awful so that's going to be a fun week. Or two. In addition, getting Ella to drink enough water on a regular day is a battle enough, I can't even imagine what she's going to be like after throat surgery. Twice. And our past relationship with dehydration is a bit rocky..

INDECISION
Should I schedule the surgery before Christmas or wait until after the holidays? I don't want to ruin any holiday fun, but I also want to get started and get it over with. Will she miss her Christmas party at school if I do it now? For the surgery in February will she miss her Valentine's Day Party? Does it matter?

EXCITEMENT
Excitement about the potential that this could be a game changer for her. If she was physically incapable of making certain sounds because of her structural anatomy, fixing that could open up a whole new world. Also, the tubes and ear cleaning could open up hearing possibility, potentially reducing the need for hearing aides and improving her speech as well. She has been so talkative lately and even coming up with stories from school to tell me randomly, some of which I can understand and interpret, and some of which I have to smile and nod. I know she wants to communicate more and I am excited to see how this helps her.

GUILT
She has been in speech therapy since nearly the day she was born. We have pushed her and encouraged her and practiced these sounds over and over, trying in vain to get her to pronounce things correctly.. and guess what? She couldn't. Physically couldn't. She was trying her hardest. Doing her best. And she couldn't.

THANKFULNESS
I mentioned one time that I had considered not going to the CdLS Conference last year because I was feeling guilty that I didn't think we needed the medical counseling or intervention that others did. But it was at that conference that the Developmental Pediatrician first mentioned VPI to us. If we hadn't been there.. if we hadn't met with her, how long would it have took us to notice this? Would we have ever? Could she have lived her entire life with speech difficulties that could have been fixed? So thankful we were there.

So lots of emotions to process over here. Praying for wisdom and strength that we're making the right decisions and all the surgeries go as planned. It's going to be a rough couple of months around here but we are clinging to the hope that it will all be worth it in the end!

5K Motivation

I posted a blog a few months ago about how this was going to be a year of growing and learning and trying new things. I mostly meant in my photography business but somewhere along the way I got tangled up in some personal growth stuff as well. I've honestly never really given much thought to the idea. The extent of my personal growth background consisted of walking through the aisle at Barnes and Noble and giggling at all the "self-help" book titles out there.. "So Your Son is a Centaur", "How To Be Pope", "Knitting With Dog Hair,"or "How To Speak Cat." I don't even know..

Anyways, one day back in May I got a crazy thought in my head. Really crazy. I usually like to hear out the thoughts in my head, entertain them a bit at least, but this one just seemed a little out of control, pretty far fetched. It told me something I'd never heard it say before or ever expected it to say in my lifetime. Something that really sounded like a bad idea.. potentially dangerous.

It told me I should go for a run.

This voice made it seem like this "running" would be something enjoyable to do.  Positive, if you will. Now let me preface this by saying I am NOT a runner. Oh sure it may look like I'm semi-in shape and I played sports and actually ran track in high school, but I am not kidding when I say that in track practice after the run jog around the block (we weren't fancy enough to have a track at our school) and actually only 3 sides of the block so roughly 300 meters, as a warm up for the rest of the team, would literally end me. I would be heaving in the intersection, partially collapsed near the stop sign, gasping and calling for oxygen, while stumbling around with my hands above my head to stop the ever increasing cramps that were sure to take my life shortly while the rest of the team took their "warm up" and joyfully continued on to their 10 mile run that was their actual practice. What in the world??? I was mainly a sprinter and jumper in high school (not really that great of one either..) and I absolutely hated it when my coach would make me run the 200m dash. Dash? There was no dashing involved. In my world, the 200 meter was akin to an Olympic marathon. One that I had to pace myself and conserve energy so as to be able to complete the long journey. Carb loading the night before was a must. I am not a long distance runner. It's just not something I'm naturally good at. I never have been. My entire life whenever I've heard someone say that they run for "fun" I assumed they were either 1. lying. or 2. certifiably crazy and I should back away verrryyy verrrrrryyyyy slowly. There's a man who runs Ella's Run every year who jogs a "warm-up" 5K before the actual race. What in the actual world... I'll be adding that to my list of wonders to ask God about someday..

This voice kept pestering me though. However, in keeping with my previous life story of primarily only doing things I'm good at, I wanted to ignore that voice. I knew I was not good at running. I knew I didn't enjoy it. I knew I would fail it it. But the voice was insistent. And weird. But eventually I listened. When my husband got home from work one day I informed him that I wanted to go for a run and after he picked his jaw up off the floor and wiped the puzzled look off his face, I laced up my 5 year old tennis shoes (might be an indicator of how often I work out that they're still in pristine condition..), closed the door to the sounds of my children gleefully guffawing about the prospect of their mother actually running, and took off down the road. That first night I made it an entire half mile. I was SOOOO proud of myself. I'm not even exaggerating. I hadn't run that far in years. I couldn't believe I did it! I hoped I had silenced that voice in my head, checked it off the ol' "life goal" list, and walked the rest of the way home, wheezing just a little. But a few days later, once I could walk again, the voice was back. I should run. Why? I don't know. Well.. I reasoned.. I ran a half mile the other day, I could probably do it again. But this time when I got to my half mile marker, I wondered if I could run a little further. One more block. Just to see. And this continued. Every few days I would get the urge to run, and each time I ran I tried to go just a little further than the last time. To the next electric pole, to the crick, past the dead badger on the road that's been there for a month (good motivation to get past the smell..). Until one day I ran an entire mile without stopping or dying. I couldn't believe it. I had not run an entire mile since the Standard Physical Education Test in 6th grade. No joke. At 33 years old I had done something I had not done in over 20 years.

I thought about stopping there but the next time I ran I still had that next electric pole in sight. Another thought started to creep into my head that if I could run a mile, well then maybe I could run a 5K, right? I mean.. people do that. I've seen it with my own eyes. That's only 3 times as far as I had just built up to running after an entire 2 months of training. *eye roll. But the scary thing was, I honestly didn't know if I could do a 5K. Like physically.. didn't know if I could do it. Remember in all my years of track I still couldn't make it around the block? I really didn't know if it was possible for my body to run that far and survive to tell about it. Maybe I had capped out at a mile. Reached my potential. I should accept my award, thank my colleagues and parents and husband and God and everyone who made this dream possible, and finish my running career at the top of my game. I kept it in the back of my mind but I honestly hardly entertained the thought. Because I didn't think I could. I wish I could tell you that I took my own advice about living without fear and regrets and challenging myself and not being afraid to fail, but I didn't. I wish I could tell you that I decided I could do hard things and signed up for the next 5K to keep me motivated, but I really didn't want to fail. So I didn't sign up. I wish I could tell you I was so focused on my goal that I sacrificed and trained hard every day to achieve it. But I didn't. I wish I could tell you I dreamed big dreams and set out to accomplish all that I could. But I didn't. I was too afraid of saying I was going to do something and then not being able to follow through with it, so I didn' say anything at all. But I did keep going a little further every day. Quietly, putting my head down, and taking a few more steps. And guess what? Pole by pole, dead animal by dead animal, eventually I did it. After that first mile, I ran a mile and a half, then 2, and eventually I ran an entire 3 miles. All at once. Without stopping. And I was still breathing. mostly

A few weeks ago I completed my first official 5K Race. I wasn't first. I wasn't last. But I finished. I still don't necessarily consider myself a "runner." I had intentions of buying actual running shoes, or maybe a arm band for my cell phone and better ear buds, but in the end I ended up wearing my half-a-decade old shoes, holding my phone, and swiping my 10-year olds headphones.. I'm not sure if running is something I'm going to continue to pursue or not. I can't say I necessarily enjoy the act of running, but I do enjoy having ran having run ranning. I enjoy when it's over.

It might not be a big deal to a lot of people. After all, I have friends who have run half marathons and full marathons, or family members who have done actual hard things like beat cancer.. but I'm still proud of myself for showing up and taking steps (literally) to be a better version of myself. Part of me wishes I would have set my big 5K goal at the beginning of the summer so I could write some motivational post about goal setting and not giving up and not being afraid to fail and if I can do it you can too and look how far I've come! But I'm obviously still quite the work in progress. Maybe it's ok that I didn't set big goals or dream big dreams. Maybe it's ok that I just literally put one foot in front of the other. Maybe it's ok that it took baby steps and not giant leaps. Maybe there's more than one way to get to your goal. Maybe there's more than one path to take. Maybe I'm just BS-ing to make myself look better. Either way..

The point is- No matter what you want to do or how you want to get there, even if you don't know or don't think it's possible, just start. Just show up. Take one step. And then another. It's scary to dream, but it's even scarier to think about a life without dreams. Don't be too afraid or caught up in not knowing how it's going to end or if you're going to be able to complete it. Live your best life. Be your best you. Listen to that crazy voice in your head every once in awhile. With caution of course. I still think 26.2 miles is a little too far.. ;)

CdLS Conference

Whew! The kiddos are finally back in school

and it's time to start doing all those things I said I would do but haven't because there were 1000 kids living here all summer and I literally couldn't hear myself think at any given moment of any given day and refereeing arguments was my #1 job and boy did I own it.. By the way, does anyone happen to know where that mom went who used to write sappy back to school posts about not wanting her kids to leave and missing them? Hmmm... weird. I'm not actually sure either.. Anyways, all those things I said I would do and haven't? Starting with updating this blog about our CdLS Conference trip! Well, actually the first thing I did when they went back to school was scrub this sticky floor because summer + 5 kids = ew. But now that that's checked off the list, to the blog we go. (And also thank-you's from Ella's Run are going out soon too! *hangs head in shame.. I ordered them immediately after Conference and had been waiting and waiting, and forgetting, and waiting for them to come in the mail until I just realized last week I was supposed to pick them up at the store. Oops..)

Way way waaaaaayyyyyy back in June (it feels like a long time ago) we were able to attend the National CdLS Conference in Minneapolis which is just a hop, skip and a jump away from us so YAYYY for saving lots of money on airfare! This was our 4th Conference which is just ridiculous that time has gone by so fast that it's even a possibility that we've been involved with this community for this long but also WOW, what a blessing that we've been able to attend all of them since Ella has been born and we learned about CdLS for the first time! We were able to drive up a few days early and stay at my aunt & uncle's cabin about an hour south of where the Conference was. It was SUCH a nice few days of getting away for our family (besides Hudson spiking a 102 fever on the drive there..). We were able to fish, boat, swim, play games, relax and just hang out together. Perfect vacation!

After a few days at the cabin we headed up to the hotel to get checked in to Conference. From the  very minute we walked in we saw people from our tribe. Families we had connected with at past Conferences, people we had previously only known online and kids we could recognize were "ours" just by seeing them and were eager to get to know! There is just such a feeling of connection and acceptance between families there it's hard to describe! 

We spent the next few days going to workshops and trying to take in all the information we could. Probably one of the best workshops was about special needs trust and financial planning. There is just soooooo much to learn and do to prepare for the future but we're taking baby steps to get there. We also met with specialists and learned things from the OT and Developmental Pediatrician that we've been able to implement at home and now working with at school as well. I am overwhelmingly thankful for these resources. Just earlier today I was chatting with the OT we saw at Conference and getting more information from her and that resource is PRICELESS. Having someone else on your team that is knowledgeable and helpful and another advocate can just feel like a huge weight off your shoulders when you're not sure where to turn or how to go about getting what you know your child needs. I may or may not have started my last email to her with 1. I love you. Professional or not? I care little.. 

On one of the evenings we were there, the city of Minneapolis even took part in Conference by lighting up the I-35 bridge purple for CdLS. Super cool!!

One of the most heartwarming parts of Conference is the dance party after the banquet on Saturday night. I wish everyone could experience it. Kids and parents and grandparents and doctors and therapists of all ages, sizes, colors, nationalities, developments, verbal, nonverbal, mobile or not, out there on the dance floor celebrating life together! What a joy to see people of all abilities out there sharing that beautiful space together. The teen boys who were volunteering at Conference and out there dancing with all the CdLS-ers?? Hand me a tissue. The whole box.

I was so surprised to meet sweet Aubrey who we had connected with through this very blog.
Her and Ella could be sisters!! 

Representing Nebraska! 

These girls. Some with CdLS. Some not. Didn't matter. 

A.J. Ella and Lauren coming all the way from California to New Jersey 

We had an amazing 5 hour car ride home (seriously!) Sunday morning with only ONE stop (can you even believe it??). Well... actually there was 2 but I'm going to choose to not count the first one that occurred before we were even out of city limits in the pouring rain for the 2 year old that someone was supposed to take potty but apparently didn't.. ahem. Anyways, the kids were so well behaved on the way home and Ella and Levi giggled and laughed the entire last hour which we were just delighted with. Until we actually got home and realized they had broken into the bag of snacks and were throwing Cheetos and Oreos allllllll over the back seat and there were crumbs literally in every crack and crevice. So that's what was so funny, huh?

We really had an amazing trip and are so thankful for all the support and encouragement and love our friends and family community shows Ella!  I have to admit I was a little hesitant about this Conference before going. I started to get a little insecure.. like, maybe we shouldn't be going to these Conferences after all. Maybe we aren't going to fit in anywhere. Maybe we've been to enough. Maybe it's selfish to go to our fourth when there are others who have never been able to attend a single one. Maybe we know everything we need to know and aren't going to learn any new information from the professionals. Maybe it's time to bow out. Step back. Take a break.

But I quickly remembered why we continue to make these Conferences a priority, why we continue to go. We go to encourage others who are just starting this journey and in turn be inspired by the ones who are ahead of us. We go to expose our children to people of all abilities and make it the norm for them to see. We go to show them love and make room in our own hearts for love and acceptance to grow. We go to grow as individuals. We go to learn about new ways to care for and provide the best life for Ella. We go to truly remember what's important and relationships and connections are at the top of the list. We go to have community with members of this club that no one ever wanted to belong to. We go because there is space at the table for anyone and everyone there and we want to be a part of it.

You know what's funny? Our kids who are younger than Ella have never asked about why she's different. We talk about CdLS openly, but they've never once asked what it means. Hudson turned 5 this summer and is a very bright and observant child. I wondered if he would ask why we were doing 'Ella's Run' this year. Why does Ella get a run and not him? Nope. I thought for sure he would ask why we went to Conference. Where we were and why we were staying at this random hotel and leaving him in childcare with these random people for the first time in his life? Nope. I thought he would notice the kids in the lobby and dining hall with obvious disabilities, limb differences, wheel chairs.. Nope. He sees no differences. And that's exactly the way we want it to be.

13 years

13 years.. Can you believe it's been that long? 

Could you have ever imagined we'd be where we are now?

Waking up in each others arms.. 

at 3 am...

 to the sound of the dog barfing outside our bedroom door??

Darn Father's Day Fish Fry grease.. 

Every year has it's share of ups and..

well...

downs..

But this year in particular has held a lot of changes for us. 

I wish I knew how you really felt about it.. 

I know starting my photography business has been exhausting at times. 

It's taken a lot of energy

and determination.

But I admire how you're always willing to help me out..

when I'm testing my settings,

need help scouting locations,

Or even trying new poses...

I want you to know I see you. 

And all you do for us. 

You sure know how to make us happy. 

And when we're strapped for enough seating arrangements,

we know we can always count on you

to be available.

Wherever we are.  

 Our life is crazy and chaotic at times, 

 But you always make it fun.

You embrace the chaos, 

and saddle right up to the horse duck. 

I love to watch you pursue your passions.

(sometimes while I can pursue mine at the same time..)

and share those passions with our kids,

teaching them so much about life along the way. 

You are their greatest supporter

and biggest fan. 

And also apparently a better nail painter. 

You still romance me at Valentines Day in your own unique way 

(and ultimately make me feel guilty for not doing anything nice for you..)

And you always make me feel beautiful even when.. wellll...

I love your silliness,

sense of fun,

and adventure.

You build the best snowmen,

and snow tunnels,

and have the most fun snowball fights.

Even the dog prefers you. 

And you know what you're really good at?

That dance called "The Toothpick". 

Some people might know it as "The Floss" but to you and in this house it shall forever be referred to as "The Toothpick" 

So here's to 13 more amazing years of weathering life's storms together. 

There's no one else I'd rather share this life with. 

Good night. 

Peace out.