Tuesday, July 17, 2018

24 Hour VEEG Results!

I posted here that we had some concerns, after an initial EEG in April, that Clara was having a-typical seizures.

Due to the abnormal results, the neurologist highly suggested a 24 hour video EEG to get a better idea of what was going on, how often these seizures were occurring, etc. This test was done in June and honestly, went much better than we anticipated.

Clara was a champ and other than a full-blow tantrum at bedtime and not crashing out until midnight (can't say I blame her, I wouldn't want to sleep with a video camera in my room and 30 stickers glued to my head!), she did very, very well.

A few pictures from said 24 hours . . .


All the wires and main box were contained inside her little cross body purse. Genius move, Dr. R. She only tried to take it off 2-3x and didn't fuss when we put it back on. 

Headed home . . . 



Being monitored for hours on end is exhausting . . . 

Not going to lie, it felt like I was on Big Brother. She was napping on me and the video camera was pointing right at our faces and it made me all awkward, like I didn't know where to look or what faces to make. Ha! 



After crashing at midnight, she slept solid until 5:00am. She woke crying and confused and Brandon (who was on her floor) immediately jumped into bed with her to calm her and get her back to sleep. Worked and we were thankful! 

Slept like an angel until 9:00am

We received the results yesterday, and I am so eager to share that Clara's results came back completely clear. As in, the Dr. didn't see one bit of seizure activity. He said the results are normal for what he would expect for someone with typical brain development, not just normal for someone with neurological differences like Clara. This is so encouraging on many levels! He is 90% sure she is not having seizures at all and stated sometimes the initial test is a fluke for some reason.

Said fluke stressed me out hard core for the last few weeks, but it's all good. :)

This feels like a major win in what has been a season of continual battles (with the state regarding services, insurance regarding treatment, etc). Thank you, God.

We are celebrating!



Tuesday, July 3, 2018

Camille's ballet debut

Camille has been begging to take ballet since she was 2.5 years old. I've asked if she would like to try soccer and a variety of other activities and she always replies with "No thank you, Mommy. I really just want to take ballet." 

I've held her off as long as possible (because well, I'm not really sure?), and agreed to put her in a one week ballet camp this summer to test the waters before signing her up for an ongoing class. 

Verdict? 

She was on cloud nine every day and came home with the biggest smile. Absolutely loving life and so, so happy. 

Also? Mama needs to get a grip. I cried every. single. day. watching her and I still tear up every time I watch her final "performance. " Ballet apparently brings out every emotion I have buried about my littlest girl growing up. The song she danced to came on Pandora while we were coloring the other day and again, waterworks. What in the actual world? 


I think fall ballet lessons are in her future! And possibly more therapy for me. :)

Tuesday, June 26, 2018

Seven (Random) Things Keeping Me Sane

It's summer which means the little people are home from school and depending on where you live, the heat is is full force.

As in, it is 500,000 degrees in Texas.

The lack of structure that summer brings combined with the instant shower you experience the second you walk out the door can leave one, well, feeling a lot of emotions.

Thus, I present you with seven completely random things that are keeping me sane. No, this is not a Pinterest perfected summer schedule for ages 0-6 nor do any one of these items help combat the heat + humidity situation here in Texas, but each and every one is bringing a smile to my face and so I decided an entire blog post was in order.

You're welcome.

1. Lizard Defense
Go ahead and laugh. I know. My fear of lizards is ridiculously insane. But it is what it is and that is why my husband bought me this magical liquid for Mother's Day. That's right. This was a Mother's Day present and I squealed with happiness as I unwrapped it because I am that psycho. Brandon can buy me this stuff for every Mother's Day from here on out and I will not complain. Please don't talk to me about how lizards are beautiful creatures that contribute to our lives by eating mosquitos.

Not buying it.

I am sure this is nothing more than $17 sugar water but I don't even care. Five weeks have passed since unwrapping it and my bottle is empty (see? psycho.) and Brandon is all "Didn't I just buy that bottle?" And I am all "Do you not know your wife? Spraying this on every square inch of the outside of our home is now part of my morning routine. I have only seen three lizards since May 13th. That is all the evidence you need, husband, so Lizard Defense is now added to our subscribe and save order on Amazon.


2. My Backpack Purse
I dont know if this is insanely genius or nerdy, but I am in love with this thing and my right shoulder is in love with it too because it is no longer screaming at me at the end of the day for the 436 items disproportionately weighing it down.  It is amazing what happens when you take all of that weight and even it out across both sides. I am a new person and I have only been carrying it a week. And if your vote is that I have jumped head first into Nerdville, well, let it be so.




3. Next Right Thing Podcast
I have been following Emily P. Freeman for several years and while I love most of the work she throws out into the world, her podcast is my favorite. The filter for anything she creates is that it must "create space for your soul to breathe." I think we could all use a bit of soul rest right about now, don't you think? Emily's voice is sooooo calming and the episodes are short (10-15 minutes), yet make you think deep. Each episode is somehow my new favorite. Episode #39 titled "Don't Give Your Critic Words," was especially powerful, and I have thought on this idea for weeks since listening to it.  




4. Individual Shoe Bins
I'm probably late to the game with this life hack but man, oh man, this is saving me. Other than mommy and daddy, all shoes are kept in the laundry room. Each child has exactly zero pairs of shoes stored in their closet. Walk in the door? Drop your shoes into your individual shoe bin. Walking out the door? Grab a pair as you walk to the car. No longer am I finding shoes strung all around the house or continually walking flip-flops back to my child's closets. Why in the world would one want the chore of constantly losing shoes and having to take them back to a closet 248x a day?

Clara's bin on the left. Camille's bin in the middle. Parents bin is on the right (which is more for storing Brandon's work-in-the-yard or bum around shoes, because we are responsible humans when it comes to shoes whereabouts). No more "MOOOOOMMMMMY DO YOU KNOW WHERE MY SHOES ARE? I CAN'T FIND THE OTHER SHOE, MOMMY!"

I bought three of these to get the job done. Shout out to Chip and JoJo for helping a mama out. While they aren't cheap (I had a gift-card, don't judge) I figure they are visually appealing and can easily be repurposed once my children are Camille is no longer in need of shoe storage assistance.

(Obviously, Clara needs help putting on/taking off her shoes. It is pretty cute though as when we arrive home, and she walks into the house, she knows to stop and wait for me. I say "shoes!" and she will stop and wait for me to assist. Love her. And I love Camille too, for the record.)



5. Messy Dresser Drawers
I am a type-A personality on many levels. That is no shock to many of you. But there is one area of which I am overly type-B and I don't even care. It is actually freeing to the A portion of my personality to lean a little more B. This area would be dresser drawers. The state of these drawers does not ruffle my feathers even a tiny bit. Why, for the love, would I take time to fold clothes when the effort will be undone in approximately .4 seconds when my children Camille decides to "find a new outfit." Granted, a lot of our clothes are hung in our closets, but the stuff in the drawers? A hot mess. An amazing hot mess because it takes us .2 seconds to put away the laundry and keeps mama from losing her mind when my children Camille thinks it's adorable to play musical pajamas before bed.


Camille's pajama drawer

Clara's pajama drawer 

My pajama drawer 

6. Sparkling Water - Filled Wine Glass
I won't lie. I enjoy a nice glass of wine from time to time. There is nothing wrong with an occasional glass or even a nightly glass, but for me, I don't prefer to drink nightly. However, I need something other than boring water at the end of the day and while I would love to sip on a warm cup of coffee as I am cuddled up in my blanket relaxing on the couch, I don't want to be awake at 4:00am.

Enter sparkling water, poured into a wine glass.

I know, I know. Many of you are sparkling water-haters (I won't call you out, but you know who you are), but for all of you Lacroix lovers out there, this one is for you. Or for anyone who just needs something other than lame water at the end of the day.

Pick your favorite wine glass. Below are my favorites.

Fill said wine glass with a generous amount of crushed ice.

Follow with sparkling water of choice.

Relax on the couch and pat yourself on the back because you are not drinking wine, or coffee, or soda, or whatever you're go-to-but-shouldn't-drink of choice is at the moment. And give yourself another pat for upping your water game.

How cute are these? Anything is more fun in a cute cup. 


Current favorite 

Another favorite 
See? Much more fun. 
7. Girls Nights 
Brandon's business trips come in waves and right now we are in a busy season. In an effort to offset Witching Hour Crazy Town, the three of us left at home have Girls Night. On Girls Night many of the typical house rules go out the window. 

We start about 5:00pm with a movie and dinner in the living room eating whatever in the world you want. Literally. You want to eat leftover queso with a spoon with a side of yogurt and processed macaroni and cheese? Sure. You want a granola bar with a side of nilla wafers? You got it. Lays potato chips with princess shaped goldfish crackers? Game on. Please see pictures below to reference said food choices. For the record, Camille only ate one of those grapes and I didn't even attempt to have her eat a second because #girlsnight. 

Girls Night also involves skipping baths (haha jk, like we take baths every night) and the little people going to bed by 7:15pm and mama landing on the couch with a book or episode of House Hunters or Drop Dead Diva (#addicted) and wine glass full of Lacroix (refer to #6).  

The next time your spouse is gone just do yourself a favor and implement Girls Night. Or Boys Night. Or whatever title combo fits. Throw out the rules and unload some of that self-induced pressure when you're parenting solo. You can always eat broccoli when your spouse gets back into town. 



Oh yeah, she also ate a hawaiian roll this particular night. After the queso and mac and cheese. 

Clara pumped about her nilla wafters. 


What random things are keeping you sane this summer?

Tuesday, June 12, 2018

Special Needs Potty Training . . . Take Two . . . Eight Months In

Well here we are, eight months in with potty training round two, and since it's been a while since my last update, I thought I would catch everyone up on where we are overall in the process. 

I last shared in this Instagram post that Clara met her goal of one month with no (pee) accidents! This was an gigantic win for Clara and our family. We are so proud of our girl. She had been on this step of the protocol since December 2017, so again, huge accomplishment.

Since the end of March we have been training her (both at school and at home) to use her AAC device to tell us when she needs to use the restroom. What does this look like you might ask?

Clara initiates using the restroom by walking to the restroom and waiting for me to come help her pull down pants, get on the toilet, etc. Now that we are training her to use her AAC to initiate potty (instead of just walking and standing there), we keep her device on the bathroom counter.



When she walks into the restroom and waits by the toilet, we use a total physical prompt to show her the button to push that then speaks out loud "I need to go potty please."

The goal in this, and just like anything we are teaching her, is to use the least prompting as possible. We start with a full physical prompt (my hand over her hand pushing the button with her) and once she masters this we move to a partial physical (touching her wrist or elbow to  signal to her to push the button), and then to a gesture (me pointing to the button to remind her, but not touching her) etc.

Currently, when she gets to toilet all I now have to do is give her the verbal prompt, "Tell me what you need," and she presses the correct button!

Once she is consistently able to use the AAC next to the toilet with no prompting (not even verbal), we will then stop her by the bathroom door and prompt her to use her device. Once that location is mastered, we will stop her in the hallway, and continue to increase the distance from the restroom until she is using her device regardless of where she is in the house. The hope is that this concept will then translate when out and about in the community so that she knows regardless of where she is, she can push this button to tell us, or other adults, that she needs to use the restroom.

She has come so far in eight months. I know she will get this, too. I am beyond thankful that most of the urine is making it into the toilet, even if we are still homebound quite a bit.

Caught this big smile right after I picked her up from school! 


Since I'm sure you all are dying to know where we are with bowel movement training, I will break it down for you.

She would rather poop in her underwear.

The end.

Y'all. I don't sit around and whine about all the extra behind the scenes work that goes into parenting a child with disabilities, because really, what good is that going to do me? (Not that I don't ever want to. I'll admit that.) But can I just have a moment? I have cleaned so much poop over the last eight months I could just cry a million tears. Poop in my fingernails. Poop on the floor. Poop on my feet. Poop on Clara's feet. Poop on my legs. Poop on Clara's legs.

Everywhere.

Somewhere along the way I texted Brandon something along the lines of "Omgosh. I cannot handle the poop. I just tossed three pairs of underwear because I. Just. Can't. Scrub. One. More. Pair. Nope. Ain't happening."

Except I didn't use the word poop.

Also, it is important to note, she has only had one poop accident at school since we started eight months ago. I'm on to you, Clara. I see what you're doing here.

ANYWAYS.

In an effort to turn this train around, we've been collecting data the past few weeks of all things poop. So glamorous, right?


We've been recording . . .

Date
Exact time
Location of accident
What she was wearing
Consistency of the poop

I realize this is 2018 and there is probably an App that could make this easier, but instead I created a chart on spiral notebook paper that looks like it was crafted by an 11 year old, instead of a 35 year old.

You can pin this if you want.


After several weeks of charting, next steps include . . .

  • Close off all bedroom doors (since that seems to be her poop location of choice). 
  • Schedule a 20 minute sit at 6:10pm to try and catch a success on the toilet. 
  • Play Ipad will be faded as a reinforcer for pee success and will only be given to reinforce a successful bowel movement. (No time limit)
The silver lining to a 20 minute sit? She thinks my iPhone timer is funny. Love these giggles!


She has come so far in eight months and I know she will keep making strides toward mastering this developmental milestone.

*** UPDATE*** After my meeting this week with Clara's BCBA we are tweaking the protocol a bit. Not that anyone cares, ha-ha, but this is more for my records than anything. Because let's face it, in a few years I will not be able to recall any of these details. Anyways, still closing bedroom doors. Still a scheduled sit at 6:10pm. Still only giving the iPad for a successful poop in the toilet and a less preferred reinforcer for pee. We will now have her wear her AAC device 24/7 to help encourage her to use it to initiate potty and other things. But since she tends to stim on it (hits buttons repeatedly, at random, thus not using it functionally) we are incorporating a bluetooth system. Clara will wear the AA 24/7, but only I can hear noise from the buttons. This will hopefully reduce the satisfaction she gets from stemming (since she won't hear anything). When she uses it functionally, I reinforce as needed, but when she stems, I walk in and remind her to stop. So now I get to wear wireless headphones around the house from 3:30pm - bedtime. Yay! :) We will also be keeping the bathroom door closed in order to help facilitate use of the AAC. Here we go! 

Tuesday, June 5, 2018

Do It Afraid

Over the past few months I have had the privilege of participating in several new, exciting opportunities. And by new and exciting I really mean I was honored to be asked, but I was literally scared to death to follow-through after giving a yes.

Both opportunities were something I felt the Lord nudging me toward, telling me to do, go, say yes, just do it afraid. To the point that if I said no, just because I was uncomfortable, I was being disobedient to His call.

Just do it afraid, Britt. If you wait until you feel ready or less anxious or fully prepared, you will never do it. The opportunity will have passed you by and who knows when it might come again. Just do it afraid. 

Just because we feel the fear doesn't mean it's not from God.

So I said yes to both - my first paid speaking opportunity and a fashion show fundraiser for the local Gigi's Playhouse. The first required a prepared speech to a roomful of approximately 50 women (where I knew only two) and the second required me to put on cute clothes (ok, that part was fun) and WALK DOWN A RUNWAY ALL ALONE AND POSE FROM SIDE TO SIDE AND DO ALL THE GESTURES WOMEN WHO WALK DOWN RUNWAYS DO ALL WHILE SEVERAL HUNDRED EYES STARED AT ME.

Jesus, take the wheel.

Those that know me well know that I am most comfortable behind a computer screen. As in, typing words in a room all by my little self. Just me and my coffee and my laptop. Not speaking words to a room full of people and most certainly not strutting up and down a runway.

Oh my goodness gracious.

I cannot begin to convey to you how nervous I was before both events. I ran to the restroom approximately fifteen times at each gathering. Sorry not sorry. This is just what happens when my nerves set in.

Because what if I screw it all up? What if I fail? What if I jumble my words while on stage or forget my points one through three? What if I am not the "type" of speaker they envisioned when they invited me and paid me actual dollars to come open my mouth and "inspire?" What if I fall while walking down a stinking runway? What if I throw up or pass out or . . . ?

The icing on the cake was when the woman running the fashion show (love you, Kathryn!) told me five minutes before I was to walk to JUST POP OFF MY JACKET HALFWAY DOWN THE RUNWAY AND THROW IT OVER MY SHOULDER.

I'm sorry, what? I don't even know what that means. I wear jean shorts and t-shirts approximately 3/4 of the year and how do you even just casually pop off a jacket while wearing it?

Y'all, I told her no.

This is where I draw the line, K. I obeyed the Spirit and I said yes and I will walk in this show but there will be no popping off the jacket. No ma'am. Ask the next girl.

The picture below is before she called me out as I was on stage and made me take it off.

Again. I basically died.


But y'all. There is so much I would have missed had I said no out of fear. And this lesson of just doing it afraid has really stuck with me the last few months. God has big, wide plans for us, experiences He longs to give us and share and delight in with us, and we often miss these good gifts because of nerves and assuming someone else is better suited for the job.

I would have missed hugging the necks of Hope Moms of West Texas, hearing their stories, and sharing together in their burdens and their joys. I would have missed eating a delicious meal of bbq and cornbread and cobbler and taking pictures together honoring our babies in heaven. I would have missed reconnecting with a friend from college who lost a baby at seven weeks old due to SIDS. I had no idea. Yet, because of a yes offered in fear, there is a connection between old friends that never would have been.

(pictures from the Hope Mommies West Texas Chapter event to come soon)

I would have missed getting to know a handful of new friends and families affiliated with Gigi's Playhouse. Several beautiful friendships have begun as a result of a "yes" when I really wanted to just pull a Jonah and run and hide. I'm looking at you Belinda, Nicole, Carly, and Mandy.

This is my new friend, Nicole. Love her so! 

So in an effort to encourage us all to just show up scared and do it afraid regardless of the outcome, I have been compiling quotes that speak to this dilemma and that have provided inspiration to me this year. I hope they inspire you to just do it afraid, too.

Let's feel the fear and do it anyway.

. . .

You’re not a winner because you won, you’re not a loser because you lost, you’re a participant because you tried. - Bob Goff 

I would rather fail trying then fail watching. - Bob Goff 

Success isn’t final, failure isn’t fatal but the courage to keep going and live into your dreams is what matters. - Christy Wright

I want to lean in with the spirit of faith, and not pull back with a spirit of fear. - Christine Caine

And I, for one, would rather fail at something I love than succeed at something I don’t. - Mark Batterson, Whisper

I don’t want to fail by failing to try. - Unknown 

The measure of who we are is how we react to something that doesn’t go our way. - Gregg Popovich , pro basketball coach

On the other side of your fear is your freedom - Jen Sincere

Success consists of going from failure to failure without loss of enthusiasm. - Winston Churchill

The only difference between fear and excitement is the name I give it - Unknown 

Courage is doing things even when you’re scared. Being brave isn’t something that happens when you’re not scared anymore. Brave people don’t stop hearing the whispers of fear. They hear the whispers but take action anyway. Being brave is hearing that voice of fear in your head, but saying, “Okay, but the truth is, God made me on purpose and for a purpose.” - Annie F. Downs

. . . 

Your turn . . . What's your Do It Afraid assignment? 

Monday, May 21, 2018

He Who Dwells Rests (aka My Mother's Day Tattoo)

 “Jesus saved my soul, but His word saved my mind.” - Christine Caine

 “The mind feasts on what it focuses on.” - Lysa TerKeurst

If I’m being honest, my greatest struggle is controlling my thoughts, my mind constantly on overdrive from anything and everything. Obsessions, replaying events and conversations, whether it be things I can control or those things I cannot. My mind never stops.  

At the end of last year God was so gracious to reveal Psalm 91:1 in new light. “He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.” And it hit me. He who dwells rests. My ability to control my mind directly effects the level of mental rest I experience. I’m in control. I get to choose! This is so important to note... My ability rest is my own choice.


Am I dwelling on God’s word and His promises and His past faithfulness? Or am I dwelling on my circumstances, other people and their lives and their choices, or anything else that ultimately is draining my energy and my joy? The former brings rest. The later just a never ending road to exhaustion. 





Twenty years from now will I regret inking up my wrist? Who knows. I also realize that getting a tattoo will not magically make all of my issues disappear. I am not a robot after all. I am a human with real emotions and real flaws. However, I can say with full certainty that I have never once regretted purposefully engaging the promises of scripture. And it’s pretty hard not to engage with permanent ink on your dominant hand. 

He who dwells rests.

Rest, both physical and mental is a choice, regardless of circumstances and regardless of what’s going on around me. Going all in. Who’s with me?





Also, a tattoo artist who loves Jesus (and comes to your house!!) and prays over you before she begins her work? Pretty awesome. Thank you Kiren, @Thecaptivatedcanvas! Your work was the icing on my cake this Mother's Day. 

Monday, May 14, 2018

Clara's latest EEG Results and Update

Cutest girl in the world! 
Clara had her second EEG done in early April of this year. Her first was done at just over one year old.  The reason's for ordering this test is too much to get into here, but basically we have been working toward securing state services for Clara and have been going through the beast of a process of getting denied because she is not deemed "severe enough" - requesting an appeal for a fair hearing - completing two fair hearings - gathering letters of support from all of Clara's medical professionals to speak to our need for services - etc. It's been a blast!

Or the exact opposite of a blast. 

Anyways, I asked our neurologist (who we had not seen in several years) for a letter of support for our case and in order to get said letter we had to make an appointment (since he had not seen Clara in such a long time). After updating him on Clara's latest milestones and ongoing goals, I mentioned Clara spaces out from time to time, he wanted to rule out any seizure activity, so he ordered an EEG. 

He also ordered a sleep study as she wakes nightly for one to two hours. 

We received the results last week. Her EEG came back "sufficiently abnormal." This type of seizure activity is suspected and she will have a 24 hour EEG sometime in the near future to get a better idea of what is going on. If needed, she will be treated with medication to help control the episodes. 

Her sleep study results came back normal. Apparently she just likes to party at night! Disrupted sleep is common in kids with neurological differences/special needs, which we knew, so thankfully there is not more going on there. 

The neurologist explained that sleep deprivation lowers your threshold for seizures plus effects developmental abilities, so a non-habit forming sleep medicine for bedtime was prescribed.  

Clara on her 6th birthday! Took her to the mall to ride the carousel, her favorite! 
I had a hard few days after learning of these results. For some reason the word seizure just made me feel sad. I was honestly probably more in shock that anything, since I was not expecting these results, but I am doing much better now!

The good news: The neurologist, along with Clara's pediatrician and eye doctor, all agreed that they have seen many kids who were having these a-typical absent seizures get on medicine and then experience a boost in development. All three professionals said this is good news. Now that we know what is (most likely) happening we can take steps necessary to help Clara progress in all areas of development. This is a huge blessing!

God works in mysterious ways, friends. If we had been approved for the state services initially we would have never pursued letters of support from Clara's doctors. Thus, we would have never made an appointment with her neurologist and he never would have ordered the EEG.

Please pray for Clara (and us) as we get ready for this test. 24 hours is no joke. She put up a fight for the 1.5 hour test, so ya know (smile). Thankfully we have a prescription medicine that should help calm her (for a time) but 24 hours is a whole new ballgame.

Thank you for the prayers and support!
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