Elise's 8th birthday was yesterday which is a big milestone in our church. We know that is the age children are accountable for their sins therefore that is the age we baptize children. Ez and I chose not to have Elise baptized since we feel she is not accountable for her actions. It was interesting the "Come Follow Me" topic this last week was on baptism. We asked our kids why they thought we decided not to baptize her. The scriptures in Moroni 8 in the Book of Mormon have been on my mind ever since this last December and verified our answer on if we should baptize her. Her spirit is already whole, already perfect. She just has to bear with the rest of us and patiently wait for us to catch up to her!
I thought it fitting that since she would've been baptized that morning, instead her dad, sister, uncle and cousins went to the temple to perform baptisms for those ancestors who have passed away and haven't had the opportunity to hear about the gospel of Jesus Christ. Although it was somewhat of a weird, emotional day I feel so grateful to raise this stellar spirit who brings others and me closer to our Savior because of the acts of selflessness, willing service and empathy taught because of her. That's the kind of daughter I have. Happy birthday :)
There is an old saying that when you pick up one end of a stick, you also pick up the other end. We are grateful to have such dedicated doctors and specialists who never cease to both amaze us with their skill and their love for Elise. One end of the "stick" with Elise is her diagnosis of Atypical Rett Syndrome. Atypical in this instance means that she meets the clinical criteria for diagnosis, however, the genetic test came back normal. There are some flaws in the testing and 10-15% come back with incorrect results, due to the high cost of the test do another one is not possible. So clinically we continue to press forward.
The other end of the stick is genetics. The dedicated doctors at Primary Children's hospital in Salt Lake City have admitted Elise into the Penelope (genetically undiagnosed) program. This program admits about just a few children each year and the goal of the program is centered in research. Because Elise has had so many tests (especially the genetic exome test) she is a good fit for the program. So the doctors in the penelope program will continue to search for any genetic anomalies that are present in Elise and connect them to genetic data bases and continue to see if there is any other explanation for what is going on . . . and maybe, a step toward a cure for genetic disorders.
This last May we made another trip to the children's hospital to begin the research. We are still currently waiting the reanalysis of the Exome test results. As research catches up with technology hopefully there will be more answers for those still in the "genetically undiagnosed" group. We are excited to be a part of this program and hope through Elise's research there will be more answers for others and us!
Today is your birthday! As we knelt for family prayers this morning and I offered the prayer, my heart was overfilled with immense gratitude for you. Tears filled my eyes as I thanked God that you were born into our family and for you as a person. You've taught me, refined me, and made me a better person. You have given me so much, more than I had ever expected. As I have contemplated what to get YOU for your birthday this year I decided on a "My Favorite Things" theme for your special day! I'm so excited about it!! Over the next few days I'll post some of your favorite things we did today to make it a happy one :) Happy birthday sweet girl!
A good friend told me years ago at the start of our new journey that life with a special needs child would significantly get easier around age 6.
Well we have hit that mark. Today is Elise's 6th birthday. I know each situation and each child is different however for us, for Elise, I can whole heartedly say life has gotten significantly easier. Just this past year Elise has made some phenomenal progress that even family and friends have noticed and commented on. Therapies have stabilized and paperwork is little to none now.
So many have asked how she's doing and what improvements we're seeing in her these days. so in honor of her today I'd like to highlight all the more obvious things she is able to do now:
Every Sunday from last January until May, I would have to get up to leave our church services with Elise because it was too overwhelming for her and she couldn't handle the hour long sacrament meeting. From May until November things improved and we didn't have to leave quite as often. And since November I've only left with her a time or two! She's content, she sits most of that hour which is incredible, and she is a pure delight. One lady who was sitting behind us told me with tears in her eyes how much she loved watching Elise throughout the meeting, especially when Elise's eyes would fixate on a particular spot and she'd smile as if she were among angels.
Elise's sleep patterns have improved immensely this last year. Most of that is due to starting her on sleeping medication the beginning of last year. It was a last resort and we were very hesitant putting her on medication but since we did she goes down now without a 2-3 hour fight, sleeps through the night, and is much more alert to be able to handle all her therapies. Sleep makes a huge difference and we saw the effects in her once she started to actually get some decent sleep. We stopped medication in September and she can sleep easily without it now. It almost seemed like the medicine helped reset her body. At times we still use it here and there when things are off but she's sleeping now!
She can identify around 20 objects correctly when we hold up 2 pictures at a time. Her therapists have taken a lot of data on this and after months of testing her on these pictures we feel she is accurately and intentionally identifying them now!
Elise can handle a back to back therapy session without any meltdowns and this includes walking 10 minutes on the treadmill with assistance (something I would've never dreamed she'd enjoy).
She can spoon feed herself applesauce and yogurt beautifully!
Her right hand use is increasing and isn't just hanging there all the time.
She's actually playing with certain toys independently for a few minutes at a time during the day without prompting! All these of course are music toys and don't require a ton of activation but she's slowly increasing different things she's able to do other than watch her shows.
Elise knows what she wants and lets us know! She's very opinionated and can now show us by getting us and dragging us to whatever it is she wants.
And her communication with her device is unbelievably different than it was a year ago! She's gone from 3 pictures across the screen to 20 pictures. She's identifying what she wants to eat, play with, watch, and read! It's exciting to see and we're realizing she has so much potential.
I think overall we've determined her happy demeanor and very infrequent behaviors are due to better quality and quantity of sleep, being able to actually communicate with us and tell us what she wants, and just developmentally getting older (hence the magical age of 6).
We love all Elise's quirks that makes our home so interesting each day. Cal's learned to like Elise always rubbing his hair, Brock's learned to tolerate and at times enjoy her always sitting on him, and Bryn's learned how to play with her sister in different ways than she normally would have.
In my journal entry of Elise when she was 8 months old, before we knew anything was going on I wrote something profound that I believe applies even more so today,
"People just smile looking at you. They all love you! I know you’re going to be a great contribution to our family! You are and will be such a light and bring happiness into our home. Always remember this gift you have."
Happy birthday sweet girl, we love you.
Our family took a long road trip to California where Elise had an appointment at Katie's clinic for Rett syndrome. There we met with 8 different specialists for 7 hours in one day. It was a long, but very informative day! The pediatrician there was incredible. I've never met a doctor like her. She spent an overall 2-3 hours explaining and going over things with us. She was very interested in Elise's case.
Here are some specific takeaways:
While we were there Elise trialed an eye gaze device and it was so fascinating. Researchers are finding that patients with Rett syndrome have a greater ability to understand and communicate and are more social than previously thought. Eye tracking works by having one or two cameras that are built into the eye gaze unit. The camera "sees" the reflection of the light off the pupils and then an algorithm turns the information from the camera into "mouse" movement. While there Elise was selecting videos she wanted to watch and foods she wanted to eat then commented how well she liked them. She told us Diego was boring :)
This is actually the most frustrating part of the whole thing. So now we will have to fight with Medicaid to try to get the device (which isn't likely since we just barely got a device) and if we don't get it, then we would have to wait 5 years.
So when it comes to communication it feels like we hiked up this huge mountain for the last few years, got near the top, then realized it was the wrong mountain. So now we are at the base of a new one, wondering how we get to the top. So time to put one small step in front of another.
So back to the big picture: our main focus is to see if we can get her that device somehow, journal and document everything, and just try to keep helping her unlock herself. Then we go back in a year. We may got to Primary Children's if she is put into that group.
We are thankful for so many resources and relieved with the hope that she will hopefully not physically regress any further. We are also so grateful she doesn't have any medical issues which seem so prevelant in these girls. We're happy to be moving forward!
Our 11th anniversary was recently and Ez surprised me with a simple gift for each year we've been married that cooralated with what happened that year in our marriage.
For the 2016 gift he gave me purple shoelaces which is the color of Rett syndrome. He got them for me so every time I put my shoes on to run it'll be a reminder of who I run for and what we've been through and will go through together. Elise not only has taught me so many valuable lessons but continues to inspire me to push myself because she has to every day. .
This was our most recent half marathon. There were endless hills almost the whole time so we felt good at just finishing the race without walking! It was so difficult pushing the stroller up those hills but we did it together. Go TEAM ELISE!
Elise's older brother and sister drew these signs for the race to cheer her on. So sweet!
I love the purple bodies for our shirts haha!
Some generous people in our church presented us with this incredible water table they made for Elise. Ez first had the idea but didn't know how to go about making one. His idea got pitched to another person and pretty soon a whole team of people helped construct it. I love how it turned out but most importantly I love how happy it makes Elise when the water turns on. I have seen so many good people go out of their way to brighten one little girl's day and the effects trickle down to the rest of our family. Elise really does bring out the best in others.
Elise has learned a very valuable form of communication: bringing us things she really wants. When she was first learning this, whatever she presented us with, we'd reward her right away to help her learn the concept. Now that she has learned cause and effect we can when needed say, "No not right now" and she understands. Sometimes she'll throw a pretty good tantrum and other times her bottom lip will turn out, her eyes fill with tears and a little cry will come out. I actually am glad to see her start doing this because it shows she understands what I'm saying. These are things she typically brings us that she wants:
my phone which means she wants to watch a show
a bag of marshmallows or a wrapper of some food she's found that she really wants to eat
her music walker toy which is not at all small (I find her dragging this all around the house until she finds someone to turn it on for her)
There are times when I'll be in another room and I'll see Elise carrying with one hand a jar of applesauce. Sometimes I'll get lucky and catch her in time before she kind of tosses it in my direction and other times I'm not so lucky and applesauce spills all over the carpet.
The other day I was getting ready in my bathroom when Elise came running in with her swimsuit in her hand. She sort of shoved it at me for me to take. I looked at her and said, "Elise do you want to go swimming?!" Immediately her head shot in my direction and her eyes very intently looked in mine and a big smile came across her face. It was one of those moments that I'll never forget. She understood me. She totally understood me!
Elise began jumping and doing her repetitive hand movements very excitedly and squealing. She ran into my closet and I found her looking up. I went in there and followed her gaze to our swim towels. I realized she knew that swimming meant getting our towels that were in my closet. I got them down and said, "Okay let's go swimming!" She was all smiles. She loves to go swimming; it's her favorite thing. I love taking her just to see how happy and full of life she is there.
I'm realizing just how smart she is and that she understands a lot more than I give her credit for. Since that day to tell me she wants to go swimming she'll find and hand me her swim diaper, swim towel, life jacket or even sometimes she'll try to drag the sprinkler hose into the house! That's one that always makes me laugh. I've heard it many times but it's really struck me lately to "Always assume competence."
July was good to us! Christmas came early for Elise and she got her new Convaid stroller and Tobii communication device!!
Since January we have used the running stroller almost every day. It has been a life saver and has helped in so many different situations. However we realized that if we used it at the rate we are now it won't last us as long as we had hoped.
In February Elise started physical therapy (PT). It was something I've been meaning to get her in but hadn't gotten around to it. After starting at a new facility for OT, the PT there dropped in on a session and said she'd love to put Elise on her schedule! She only had a couple openings and one happened to work with our schedule. After Elise's second session she told me we could qualify for a stroller through Medicaid. There are some things that we work and work relentlessly on with Elise and other times Heavenly Father places things into our laps. The latter is what happened with her PT who has been a huge asset to Elise's progress and getting us a stroller.
The stroller came in July. It already has been a blessing and the answer to our stroller problem. It is considered a wheelchair but is more like a larger and sturdier umbrella stroller. We will use it for parks, stores, and just everyday stuff. The other stroller will be more for recreation: running, biking, hiking, and cross-country skiing. We love to get Elise out of the house as much as possible and she loves being outside so both of these strollers will help her be able to do those things.
A couple weeks after her stroller came, Elise's new communication device arrived. We used to use an iPad with a communication app on it. It worked well but beginning of the summer the iPad ended up twice in the water. The first time it survived getting thrown in the bathtub but the second time it was thrown in the washing machine and wasn't quite so lucky! After those incidences along with some other things we realized realistically iPads weren't going to work for Elise or us. We'd be replacing them every year or two.
Her new speech pathologist had suggested months before that we switch to the Tobii device. I was hesitant about making the change but after learning that Medicaid would cover the cost and they were the best devices for Rett kids I began the paperwork to get her qualified. I love this device because it is solely a communication device, not a toy. Elise knows that is her voice and is how she tells us what she wants. I love that the setup is so easy. I also love that it has the capability for eye gaze. If in the future her hand use worsens and direct select finger pointing isn't accurate anymore then Elise could talk to us with her eyes instead. It's the same program, just a different mode of how to speak.
I'm continually amazed at how we are guided and led as parents and caregivers to what Elise needs. I see it all the time. We aren't left alone in knowing how to care for her. Little by little we are guided to certain therapists or are led to know what to do for her. These two new therapists and what they've helped us get have all been a huge blessing for us and Elise!
For the past couple years, Elise has silently cheered on her older brother and sister when they've performed at a piano recital, played in a soccer, basketball, or baseball game. She has been to every one of their games or performances. Elise patiently sits through them (most of the time) and we call her their biggest fan. She has been to many games and will continue throughout the years to support and cheer them on. We've been a little disheartened knowing Elise won't get that opportunity. The chance to play on a team or perform in something where we can cheer for her instead.
Ez and I signed up in Jaunary to run a half marathon with Elise. Our date nights turned into long runs together, and our family time on Saturday was spent running on the greenbelt while our kids rode bikes along side us. As our race got closer I decided to design shirts for the 3 of us to wear during our race. It didn't take us long to realize that we wanted one for each of our other kids as well. We were all in this together.
When our shirts arrived I realized this was the answer! Elise does have a team and she does have something she can participate in where the rest of us can cheer for her. Races!
She can be involved in races. This would be her thing. Her something that would be what she did, that would make her feel happy and special. Her thing where she could hear people cheering her name and feel the energy of it all. So Ez and I signed up to run a half marathon and push her. We would do it for her. This would be our thing. Our family would be Elises' team. Our shirts would be our jerseys. It will now be her siblings turn to watch this time as we become her legs.
The race was amazing! I couldn't help but smile or get a little emotional at times. I caught myself frequently smiling throughout the run. It was so much fun, it really was! Everything about it was wonderful. The scenery, the sun coming up, running alongside the river. It was so peaceful and serene.
At times throughout the run we would notice Elise smiling and sometimes giggling. My sister who ran the race with us and Ez and I all would look at Elise then at each other and couldn't help but smile and laugh too. It was an incredible feeling to be doing something for her that made her so happy. She loves the wind in her face. She loves its sensation, she always has. Running gives her that and that's why we run. To make her happy and calm. She is so peacful sitting there and at times falls asleep.
Halfway through the race it began to get more difficult. It was then that I noticed my brother-in-law's van stop a little ways in front of us and out poked all my other kids' heads and they cheered and screamed us on. Another time I saw them standing on the side, waiting to give us high fives. They did this multiple times throughout the race and I got emotional seeing them there, wearing their shirts, cheering Elise on. It was so motivating. I realized that's what we do. We keep going. We keep moving forward together. We cheer each other on especially during the hard times. And that's how it's always going to be. Life with a special needs child is not easy and at times is getting more difficult. However we have each other. We have our team to keep our heads up and to keep moving forward.
My sister commented on how it was almost a spiritual experience running along side her. I never thought running and feeling the spirit could happen at the same time! It just doesn't seem natural! But we all felt it and could feel Elise's strong spirit during that time. It's amazing how different and special something ordinary becomes when you do it mostly for someone else. It's powerful. All our hours of running week after week, month after month was focused on Elise and everything we've been through with her and our continual fight with her each day on gaining and regaining lost skills. The Fight Song came on my race playlist a couple times throughout the race. The lyrics echo the fight Elise gives each day:
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong.
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me.
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!