Favorite Devices, Equipment, and Hacks That Help Us Through This Journey....

Devices and special needs equipment are one of the hardest things to find in the special needs world. What I mean by hard is all the amazing stuff is way expensive and not typically covered by insurance. So yes some items we have had to pay for out of pocket, some items we have had help from local foundations, and some items insurance has covered. In this post I will share out favorite Items from when Emma was first born to what we use now.

ROCK N' PLAY

When Emma was little she had really bad acid reflux as well as the newborn startle reflex that was out of control. We found that the Rock N' Play from Fisher Price was our saving grace for her (as it was for Ava too). Emma slept in the Rock N' Play for many months after she was born it helped with her reflux and it helped with her startle reflex as it kept her arms from flying around when she would get startled. Emma used the Rock N' Play through out the day up until she was about 25-30 pounds and about 2.5 years old. It is also a great way to do tube feeding if your child has a feeding tube it keeps them elevated and its comfortable. Here are some pics of her time in the Rock N' Play.....

DAY DREAMER

The Daydreamer was also great for Emma as it kept her on an incline which helps with reflux and being able to see things around her. She would also occasionally sleep in it just to change it up a bit. Another great option for gtube feedings. 

*HACK* The keys in her hands are connected to balloons. This is also another great strategy to use to help hold on to the balloons better cause the sting can be hard to hold. So we tie the keys so she can hold the keeps easier but still be able to pull on the balloons. 

FOOTBALL BOTTLE HOLD (Hack)

Emma had a hard time holding on to her bottle. Her hands were so small and didn't have a ton of grasping skills for something that big so we got a football toy with all the holes in it and then cut out the bottom just the right size for her bottle. She was able to start holding her bottle and then eventually so held it all on her own. 

TUMZEE - FOR TUMMY TIME

This was great to help Emma to start bearing weight through her arms and to help her hold up her head for tummy time. This strengthened a lot of her muscles that we couldn't get her to use during typical tummy time.  I will say chunky thighs can get in the way LOL!

HUG-A-BOO SITTING SUPPORT

This supportive sitting device is very similar to a Boppy. However it a fully enclosed Boppy with hole for the legs. It's easier to see it in action than to explain it. See pics!

The Boppy

This is the one thing that we use DAILY and we still do even at 3 years old. We now have 3 Boppys and use them all! If you don't have one then get one. Where Emma cant sit up and who likes to stay in once place all the time, these boppys can help prop her up on the couch, help her be slightly elevated on the floor and helps under the arm for me when we are snuggling. There are many many more uses so honestly just get one!

TUMBLE FORM - GOTO SEAT - SWIVI HIGH CHAIR

These are our favorite seating options as Emma started to get bigger and didn't fit in her rock n' play anymore and other options outside the house. The first one is the tumble form we used this for playtime and feeding. It was a great way to keep her from always laying down. They are also a great item to take to family pictures it worked great!

Tumble Form covered with blanket makes a great sitting idea for pictures

Eating in the tumble form

Brushing teeth with sister in the tumble form

playing in the tumble form
                                        

The next one is the GoTO seat by Firefly. This seat made it possible for Emma to sit in high chairs and restaurants, swing in a swing, sit in a shopping cart and go on a bike ride. She also uses it to sit up at home and play tea party or have other play time, like with her piano.

Her high chair was another great seating device for us to use since it had 3 levels of recline which really helped due to her lack of head control. Her chair was called a Swivi seat and we got it from Walmart.  She could use it for eating, playing and helping bake in the kitchen. I wish she still fit in the seat I loved that I could use it on the floor or attach it to a chair. 

PRIMO TUB - NECK RING

This tub saved us! Once Emma got too big for her infant bathtub I didn't know what we were going to do. We found this tub and Emma fell in love with bathing. We got it at Babies R Us but I have seen them on amazon too! Best 20$ We ever spent! The neck ring is also a great option but our tub wasn't deep enough for her to float correctly. It worked great in pools and large tubs but our tub at home didn't work as well so it wasn't as beneficial for us. But again great for pools.

Primo Tub

Loving Primo Tub

Neck Ring - Loved it in Gma and Gpa big tub!

SHOWER CHAIR

As Emma got too big for the Primo Tub I again started to panic but then we got the Rifton Wave shower chair with transfer system. It has been great for Emma. 

Chair can be on the stander or placed right in the bottom of the tub like pic below

EARMUFFS - HEADPHONES

As Emma got older sound started to bother her more and more. So we took a chance on some headphones (earmuffs) that we found on amazon and BAM they worked like a charm so we also got the child size after the infant size. They are from a company called Ems for Kids. 

Even work amazing at Monster Trucks (little cousin is using Emma's old ones) Ava is even using some they are great for everyone not just special needs kiddos!

EAZYHOLD

These Eazyhold hand grips are great for helping them to learn how to hold on to items. Not only that it helps them be able to participate in things that maybe they couldn't because they can grasp items. Here are a few ways we have used them for Emma.

Holding wands at dance class

Coloring with sister

WUBBANUB PACIFIER

This binki saved us! Emma was so tiny and her suck was good but not strong enough to always keep her binki in her mouth. These wubbanub pacifiers helped to keep it in her mouth throughout the night so much better than a typical binki. I also have added a little hack that we learned to do with a pacifier and it saved us. Now Emma has a gtube so all meds go through the tube which is amazing and a big stress reliever. 

She's not obsessed she's committed lol she has 4 different ones

medicine hack!

BEADED PLAY ARCH - Hack (make yourself)

Our vision therapist made this for us and Emma absolutely fell in love with it. We recently got a new bigger one that she can now play with in her new PPOD Chair (see below). Emma loves pulling on and swinging the beads around. She also loves it when we hang lights from it. It's easy to make its just made of PVC pipes and then we decorated it with duct tape. 

STANDER

AT 12 months old Emma was fitted for a stander. Ours is called a Super Stand and we really like it. Its lays flat to put Emma in it and then we slowly raise her up to the angle we would like her to stand at. 

It has a tray table that can stay on or be removed

WHEELCHAIR - STINGRAY R82

This wheelchair has been incredible for Emma. It is very supportive for her trunk control and head control. I love that it can face either way, so she can face us or face out. I also love that it can recline completely flat which makes it nice incase we have to change her diaper since she doesn't fit on changing tables anymore. The Shade cover also comes down so far that we don't have to worry about sun, wind and/or rain. We also love that it is a wheelchair stroller

also has a tray table for work at school

you can see the canopy on top

great head support

PPOD CHAIR

This chair has been our most recent equipment purchase. I wish we didn't wait so long to purchase this item. Yes it is very very costly but o boy do we love it. Plus Emma gets to sit up more at home instead of just laying down and most importantly she is comfortable its her chill chair!

she loves it so so much!

MONITORS 

IBABY MONITOR AND OWLET

Our favorite monitors to watch over Emma are the ibaby video monitor and the Owlet monitor. We have had both monitors since Emma was a month old. To be able to watch her heart rate and oxygen levels was such a peaceful feeling. Then to be able to record any movement with the video monitor was great it would catch seizures that sometimes we might have missed. The owlet also alerted us to actually get a sleep study done due to lots of oxygen drops and sure enough severe sleep apnea (admitted to PICU during sleep study it was so bad she was taking 2 breathes a minute) So scary without the owlet we would have never known. 

FEEDING TUBE DIAPER BAG HACK

After Emma got her feeding tube I was not excited to carry around one more bag. So instead I decided to get a new diaper bag backpack and turned it into a feeding bag along with a diaper bag. It's big enough to carry g-tube pump, feeding bag, as well as typical diaper bag supplies. I got the diaper bag off of amazon, then I got grommets for a shower curtain from Walmart. 

As we find more items or if we think of anymore we will definitely come back and add them. We have many more items that we love but these ones are the ones we use the most and that we feel the most passionate about. I hope that this post can help as you start or continue on your special needs journey. I always like to do research before purchasing an item but there isn't much out there to give info from a special needs point of view so I really hope this helps. 

What Does March 25th Mean to You?

What does March 25th mean to you? 

Maybe not much just another day but for me this day has a couple of emotional events.......

March 25, 2002........ was a day that I will never forget I woke up and went to school I was in collage at the time and to my surprise my first 2 morning classes were canceled. So as I was driving home I remembered that my mom was at my grandparents house that morning to help out so instead of driving home I went to there.  My grandma wasn't doing the best She was sick with colon cancer so I decided to go there and have breakfast with my grandpa and cherishing every second with them both. As I left later that day my grandma waved bye with her pointer finger, she hadn't really moved in a couple days and I could tell it took so much energy for her to do that but it was something I will never forget and I thank her for that moment because little did I know less than 30 min after I would walk out that door would I get a call saying she had passed away. I will never forget that morning from the oatmeal and grapefruit with grandpa to the finger wave and kiss bye to my grandma. I am so grateful for how that morning played out, I will always wonder how my classes were canceled to give me such a special and precious memory to always remember. I don't believe it was a coincidence, I believe it was meant to happen that way! 16 years later and I still miss her so so much!

March 25, 2015.......this day was suppose to be Emma’s due date. When I received the news that this was Emma’s due date my heart burst because I knew my grandma had something to do with this special baby being sent to us after a few miscarriages. 

The real March 25, 2015...... turned into the most devastating day of my life. The day Drs told me that my baby, only 5 days old, would never do or be anything that I thought she would be. The day they told me to take her home and love her. The day they told me she might not see the age of 1, 3 or even 5, they just didn’t know. The day I cried so many tears I couldn’t cry anymore, some tears falling when I didn't even know I was crying. The day I watched a 4 year old hold her little sister, sing to her and show me there was nothing to be afraid of she wasn’t all that different....she was Emma. The shock, the pain, the sadness, the fear, all of it I can still feel to this day. Lissencephaly was a word I had never heard before and it was a word I didn’t want to look up online and it’s a word that you should never google. But when you are on Facebook and Instagram search away because that’s where you get your real life statistics, not google. That’s where we found families just like ours, yes some sadly have lost their child early (way too early) but some celebrating 10th, 15th, even 20th Birthdays. I feel that Emma being diagnosed on this day was also my grandma saying it’s ok I’m here to help and watch over her, stay strong. My heart just breaks when I think about others going through this day. When other Lissencephaly families describe their diagnosis day is sounds so familiar to ours and takes me back and emotions come flooding, tears streaming that I didn't even know had started to fall. 

March 25, 2018.....now for today this March 25th. This day I still get emotional as I am sure I always will but I will also smile and cuddle my beautiful little girl. The girl who has done more than Drs ever said she would. The girl who has flipped our

Lives upside but made us better people. Made us who we are today. Finding out what life is truly about, cherishing every second we are given together as tomorrow is not guaranteed for anyone. I still feel my Grandma is watching over sweet Emma and Ava, as I feel she would have absolutely adored both my girls. She would have begged Ava to wear her hair down more (I just know it) and she would have gushed over Emma’s curls. 

Today I am grateful....grateful Emma is still with us and for the most part still doing well (sadly seizures have returned). I love you Grandma and I love you Emma. Today will always be a day that both of you are in my heart. 

Hooked up to EEG to monitor seizure activity

Big sister singing to her little sister on Diagnosis Day

My Grandparents

Me as a child with my grandparents

Emma showing us that smile we were told would NEVER happen 

Us celebrating Emma turning 3!

Sisters and Best Friends Forever

March 25th will always be a day I have feel every emotion possible..........

Please Don't Feel Sorry For Us.......

I have decided to write this blog post for many reasons, but the main reason is because now that Emma is getting older her disabilities are becoming more visual. We get lots of stares and pity eyes as we are out and about in the community. But to be honest we aren't sorry or sad we are happy, yes we hate what Emma has to go through, it's heartbreaking but that is not what makes Emma who she is. Emma isn't just a diagnosis she is much much more. However, reading online about Emma's diagnosis or getting information from medical professionals it all says Emma wont be much or do much.....she will just be a vegetable. She will not breathe on her own, she wont eat on her own, she will never smile, laugh, or show any emotion, she will never really recognize or know who people are and she might not even make it to her first birthday..... Well, if you have been following Emma on Facebook, Instagram or through this blog you have seen that none of that is true for Emma. No, I don't blame Drs for giving us that information because sadly that is all the information that they have to give us, since Lissencephaly is so rare (1 in 100,000), they don't have much information to go off of. I can tell you Emma has surprised a lot of her Drs. and they are super happy about it, she teaches us all something new everyday! 

So I guess what I am trying to say is please don't ever feel sorry for us, we love our life. Emma has brought more into our lives than she could ever take away. She has taught us that no moment should pass without living it to the fullest, creating memories everyday, even if it's something simple like paint-time in her stander with big sister, bike rides, or the opportunity to take a dance class. We want to help Emma live the life that she would want and what little sister wouldn't want to be a dancer like her big sister.

Dance Class with her new Dance outfit. Too cute!

Yes, our life is hard, but honestly who's life isn't???? We all have our battles and they just look different but we all struggle. At some point or another I am sure we all feel as if it's never going to get easier, but we have to get up every morning wipe our tears and push forward, not dreading the end but cherishing every moment and memory that we make up until the end.  We adjust and find our new normals often but it works out and we push through. If Emma can do then so can we and so can you!

These are some songs and quotes that we listen to often.

This first one bring tears to my eyes every time but I love it.....Brandon asked my mom to make him  a shirt that says.....
SHE'S WITH ME.....and he wears it proudly....

If you've followed for awhile you know we love this song. Emma's life is full of battles and uphill climbs. There will always be some sort of mountain and she is always ready to climb it. She is a true fighter and never gives up!

This is HAPPINESS! 

We did not think that this is what our life would be like as parents,
we could pity ourselves, but we choose to be happy 
and cherish every moment we are given as parents to our precious girls
We love you Ava and Emma!

Having a special needs child has changed us, made us better people, opened our eyes to what life is really all about.....loving each other for exactly who we are!

Tell me she's not a happy girl....and adorable too

The connection is more powerful than I could have ever imagined..
Sisters and Best Friends.

This is Us....BLESSED!

Staying Strong After The Devastating Diagnosis.....

March 25, 2015 we were told that our sweet newborn baby who was only 5 days old had a terminal diagnosis. The world stopped, the tears were uncountable, you could hear our hearts breaking. How long did we have with her, how would we tell her sister, what will our lives be like, will she ever leave the hospital, how can we do this, and will we make the right decisions. These are all the things plus a million more that went through our minds as the Drs. enter the room with so much unknown information. Emma is pretty rare (1 in 100,000) there are not many Drs. that know about her diagnosis. Reading the info given to us from 1995 (she was born in 2015) was so limited and heartbreaking at the same time. What was Emma's life going to be like, will she even have one. We were told to take her home and love her because she might not be with us very long.

When I look back on diagnosis day I think about how uneducated every one in that room was. We all thought (including Drs) that Emma would just be a vegetable from the information that was given to us. What we didn't think about was all the unknowns, no one knows everything and definitely no one can write someone else's story. Only Emma can write her own story.

I know that nothing can take away the pain from your child receiving a terminal diagnosis like lissencephaly. But these quotes help me everyday to refocus when I am down. I wanted to share them in hopes I can help someone else who is struggling with the heartbreak of your child receiving a devastating diagnosis. Please help us to reach others by sharing this blog post, sharing Emma's facebook page and/or instagram page.
Facebook: https://www.facebook.com/Embracelifeemma/
Instagram: embrace_life_emma


Staying positive and strong after such a heartbreaking diagnosis, like lissencephaly is very hard. Here are some inspirational quotes and stories that have helped me to see our life in a different light. We are blessed that we were given Emma and we will never see it as sadness or a pity party. Yes, we are sad she has to go through what she does but we will never be sad she was given to us.

I always worried they wouldn't have a connection and boy was I wrong. Ava is an incredible person because of Emma and we are so thankful for that.

Emma had a rough year last year and I never thought she would regain her strength but slowly she is and I felt so helpless. But again she is showing us she will Defy the odds the best that she can.

She is a fighter all of our children are.......

It's ok to cry and it's ok to be sad but wake up everyday smarter and stronger than yesterday. As the job of a special needs parent is not an easy one. 

Emma is the best tour guide ever!

I never thought I could care for a child with special needs....I wasn't strong enough but Emma gave me that strength

Our family has grown and learned so much over the last 2 (almost 3) years

Creating awareness for Lissencephaly in hopes we can help other families that find themselves in our same position

yes this is hard but we have gained more than what has been taken away from us

Everyday we learn something new and we have to find a "new normal" to fit with our new situations. Embrace the change and learn it will happen more than you think. Finding "new normals" is actually what becomes normal.

LOVE THIS

New Normals are okay 

It's ok to be sad.......

Emma's life is unknown...really all of our lives are unknown. So let's not worry about the end of the staircase and just enjoy every step of the way. Embrace it, and cherish it!

Breathe

We were told Emma would never smile, laugh or show any emotion but as you can see from the pictures on this blog she made that miracle happen. So we believe in Miracles, life is a miracle

To: Ava
Love: Emma

Here are two more short stories that I love to read from time to time.......

Welcome To Holland

By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

The Brave Little Soul

"Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean?" She asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued. "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this- it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer- to unlock this love- to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's harts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."

God and the brave soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment the brave soul was born into the world, and through his suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and come together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, and some regained lost faith- many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place.

The miracle had happened.

God was pleased."

–by John Alessi

EMBRACE LIFE

2017 = Decisions, Heartache, Seizures, and..........

Feeling Blessed?????

As I reflect on the last year my heart hurts from all the decisions we have had to make for Emma. Some wrong, some right and some that we will NEVER think about again. Decisions from medications, treatment options, diets, doctors, equipment, and seizures. But with all of the decisions and heartache, between thousands of seizures, we feel blessed. 

Blessed??? you ask how can you feel blessed, you are watching your daughter suffer through multiple seizures a day, watching medications and treatments not work, and you are constantly tired. Well I would have to say yes to all those things, but here are some other things you may not see that help us to see our blessings......

*Teamwork between two parents who love their girls more than anything

*Amazing family who calls and checks in everyday

*Drs and therapists who call, email and check in ALL THE TIME just to make sure not only Emma is ok but we are ok as a family

*Drs and therapists who support your fundraisers, Help get you a Make-A-Wish (and rush it), and attend important moments

*Drs and therapists who research to find the best treatment and actually listen to our concerns and/or opinions

*Our Lissencephaly family who are always there to help; answer questions, suggest ideas and most importantly there to listen

*Amazing Foundations who help us to have family time (Mascot Miracles, Angels Hands Foundation & Embrace Life Foundation), make our lives easier (donating us a van Angels Hands Foundation), and helping us purchase supplies our insurance wont cover (Embrace Life Foundation).

*Brandon and I also have great jobs with bosses who understand and are willing to work with us when things come up so that we can both be there for Emma.

*Having such an amazing 6 year old who loves her sister so much. Does incredible at school, dance and recently won an award in Reflections contest in photography. This girl continues to impress me everyday. 

*Lastly and most importantly is that Emma is still here with us and will be 3 in March! This year was really heartbreaking for our Lissencephaly community. We lost a lot of warriors this year, some I only knew from a few posts here or there on facebook, some I created a a real friendship with their mom and talked with them weekly if not daily, and then one I actually met and held in my arms. Losing a child is something that should never happen, as I watch these families lose their precious children my heart hurts for them as they are living my biggest fear. Attending a funeral of a child who has passed and has the same diagnosis as your daughter is......well lets just say tears for days (and still now as I type this). I just hold Emma and cry praying she will not be next and that we can defy the odds and live a long and happy life. Reality can be hard but so can living in fear, so we choose to live in the now. Don't get me wring sometimes that "now" can be sitting on the couch crying but it can also be cherishing every moment and creating incredible memories.  

Through all the ups and downs this year I have to say we ended on an UP!

Dec 6-12 we were able to take the trip of a lifetime to DisneyWorld and stay at Give Kids The World thanks to Make-A-Wish Utah. we had the most incredible time. Emma's seizures started to get controlled about 2 weeks prior to this trip the timing couldn't have worked out any better. 

Praying for less seizures in 2018!