The Interview....and Emma is 18 Months

I know that I am always writing about what an amazing big sister Ava is and so I decided to actually give her a little interview to see how she really feels about being Emma's sister. I often wonder if she feels cheated due to not having a "normal" sibling relationship, but then I also wonder if she even knows what she is missing. I see her watch other people play with their siblings and I always wonder what is going on in her little head. So here is a little interview with Big Sister Ava at 5 years old, wait 5.5 years old ;) .....

INTERVIEW

Pink text is Ava
Teal text is us mom/dad
Orange is side info

*What is your favorite thing about Emma?
       I love to teach her new things and it's fun to play with all her toys with her. She loves all the special equipment, she turns the tumble form into a slide off the couch!


*What is the best thing about being Emma's sister?
      I love to share about her....what do you mean?......well one time Miss Lisa at dance let me tell everyone about Emma and how she has lissencephaly. I was so proud to tell everyone about her. 
(mom and dad had to hold back tears on this one, little did we know it was only the beginning)


*What is the hardest thing about being Emma's sister?
      I know she doesn't have seizures right now but seizures are the hardest thing. I always wish to change her spots so that she is always safe.......but honey we want you to be safe too.......I know it just hurts to watch her hurt I just want her in no pain, I hate watching her throw up too (LOL) it makes me so sad I just want to cry. At this point we wanted to cry (ugly cry) because how does a 5 year old have that much empathy for someone else. WOW! She always leaves the room when Emma gets her shots or blood draws, she cries watching her be in pain. Then she adds o ya and helping change diapers. Brandon and I stare in shock she never helps LOL she runs from the room and gags from the smell. HAHA! at least she made us start to laugh which I wonder if thats why she said it.


*What have you learned by being Emma's sister
     I have learned how to help feed her and I love doing that because we always want her eating food because we don't want a feeding tube. And it is ok to be different and looking different is ok too. Some people can walk and some people have a wheelchair and thats ok that's what makes us all special is being different. Man this girl knows how to hit us in the heart! She is so full of love and I am so proud she has learned so much. I give lots of this credit to the amazing foundations we are involved in....Angels Hands Foundation, Mascot Miracles and CATE. At every event she meets new people and they are all different but she learns that they are all amazing, no matter what they can and cannot do! 


*If you could change things and have a "typical" sister that does not have lissencephaly would you change that?
     NO! I would never want anyone else but Emma she is perfect to be my sister. Ok now I lost it I can no longer continue this interview this little 5 year old has learned more about life in her 5 years than I have in 35. 


After giving this interview I actually feel relieved it is so nice to know that Ava doesn't have any bitterness against her sister for all the stuff that we have to do for her and all the time that it takes away from her. Brandon and I have always heard people say Emma chose you to be her parents.....but we truly feel that Emma actually chose Ava to be her sister and just got stuck with us LOL. Ava helped me to see how really blessed we are to be their parents. Yes our hearts ache everyday knowing the battles and struggles that we deal with, but bottom line we wouldn't change it... any of us including Ava.

18 MONTHS

Click to expand on the videos you can see them better :)

Emma turned 18 months on the 20th so I just thought I would write a little bit on this post about how her well check appointment went as well as her neurology appointment. Emma's pediatrician if I haven't already said it a million times he is amazing! He never makes us feel that we aren't doing a fantastic job with her. He never asks is she doing this, this, this.....He always approaches it as tell me what new stuff she is doing??? and he will ask Ava too to help make her feel just as important because she is and he knows that! He gets teared up and is always proud of her new accomplishments, he loves every inchstone just as much as we do!

Here are Emma's stats at 18 months old: 
* Weight 19 lbs 10 oz
* Height 30.9 inches
* Head 17.4 inches (we broke out of the <3% and made it to 4%!!!!!)

He wants her to be gaining a little more weight so we are adding calories to her foods, carnation vanilla into her milk, avocado oil to some veggies, cream to fruits, and other high calorie foods wherever we can. She loves her peanut butter and banana smoothie! He was also happy that her head is still growing (that doesn't mean the brain is growing grooves it just means it is growing which is good) she will never have a "normal" brain due to the missing chromosome. Just wanted to make that clear because lots of people think that there is a cure and she can "get better" but that's not the case. She can work hard and improve the situation with therapy etc. but she will always have Lissencephaly. 

Her appointment with the neurologist went amazing...still seizure free since Dec. 20, 2015, thank you CBD oil/Charlottes Web (knock on wood). We do not have to see her again until July 2017 (unless we need her). She was also very happy with Emma's progress and she got to witness the incredible connection between Ava and Emma. Emma was trying to kiss Ava and we loved every second of it because being the very realistic dr that she is, she told us that wouldn't happen!!! High fives all around when she left the room...wink wink....we were a very proud family. Ava said mom she said she wouldn't do that huh and we showed her LOL! We love our Neurologist we are so happy to have her being realistic with us as well and always being available responding to emails within an hour and getting us in ASAP if needed. Realism can be hard to deal with sometimes but it's real and we have to be prepared for everything so as much as it hurts sometimes we appreciate her being real with us and not giving false hope (cause then we would be mad about that haha)

We are truly blessed with our list of DRs. We will see our Neurological Rehabilitation Dr in 2 weeks so I will follow up with the results from that appointment as well. 

Here are some fun pics of our latest happenings. 

Therapy with mom

Look at those kisses she is giving to Ava

She is so so close!!!! Keeping fighting Emma - Never Give Up!

Working on head, neck and trunk control

YAY First Pony Tail 

stop mom I am finished and it's Saturday

Watching Football and working hard with daddy

love new PJ's from Sams Club 

New headphones from Earmuffs 4 kids :) Love these so much!

"Every Princess needs to Sparkle"

Got new matching clothes they are thrilled and Ava loves her Belle shoes.
Thank you Erin. Allie and Mia <3 

Sitting up like a big girl 

Made it almost 2 whole minutes! 

"BFFs"  

I haven't blogged about this yet but Big sis started kindergarten and loves it. Here is a 

clip of her first day at school. Click the expand box on the videos so you can see them better :)

Where Are You Following From???

We decided it it would be fun to find out where Emma's story has spread. So on facebook and instagram I have asked all our followers to comment where they are from to help us fill up the map. When you comment your state also share her page so that we know it's been shared in that state. We also have other countries following but we decided to start small but keeping track of countries too so we can fill that map next. This is so fun this picture was the most recent results as of this morning, however my phone is going off as I type, Florida, New York, Alaska, Thailand......SO FUN! Please comment on this blog if you follow but aren't on facebook or instagram we would love to hear from you! If you are on facebook and/or instagram I will be posting updated maps.

Some have been asking how can you donate to Emma because you didn't really need/want a shirt (no feelings hurt I understand not everyone loves t-shirts) We have a paypal account set up if you'd like to donate paypal.me/embracelifeemma. Thanks again for all your love and support!

IFSP...What does that mean???

When we started this new journey of our lives with little Emma we had to learn a lot of new things. One thing that I am going to talk about in this post is called an IFSP. Being a teacher I was familiar with this as it is very similar to an IEP. IFSP is an Individualized Family Service Plan - Emma receives services through our local school district - Jordan School District - The Jordan Child Development Center, Birth Through 3. We are so blessed to have access to such an amazing place. Emma is able to receive Physical Therapy, Occupational Therapy, and Vision Therapy (one day we will add Speech). All of these services happen in the comfort of our own home! FYI: These amazing services are available to everyone not just us (some think we get these services cause I am a teacher but nope they are open to everyone in the district). This month marks one year that Emma has been receiving these services so guess what that means.....it's IFSP time!!!! This time can be hard and emotional but I prepped myself knowing that no matter what growth has happened... it happened!!!!!

 Before I start in on the results of her IFSP goals,  I just want to say we LOVE our therapists and over the last year they have become family, Cari, Katie and Darcy have done amazing things with our little princess, the princess Drs said wouldn't do anything. The faith and determination they have focused on Emma and her goals is indescribable. They are incredible! Thank you guys for all that you do for Emma and the love and support you also show to Ava (they watch her dance routines and ask about her week every time). I tear up just thinking about how lucky we are to have them in our lives.

ANNUAL IFSP REVIEW

Health: Great *249 days seizure free (knock on wood)
Vision: Pass
Hearing: Pass

This next part does her age equivalent to what she is preforming at. I will post where she was a year ago 2015 and where she is now 2016.

Gross Motor: 2015: 2 months - 2016: 4 months (so just to be clear she started at 2 months age equivalent and now she is at 4 months age equivalent)

Fine Motor: 2015: 2 months - 2016: 6 months

Cognitive: 2015: 3 months - 2016: 6 months

Receptive Communication: 2015: 3 months - 2016: 8 months

Expressive Communication: 2015: 2 months - 2016: 10 months

Social or Emotional: 2015: 3 months - 2016: 9 months

Adaptive: 2015: 4 months - 2016: 7 months

Based off of research Emma is typically not going to develop pass 3-5 months of age in all the above areas. So saying we are thrilled with her results is an understatement. In one year she has almost surpassed that 3-5 month of age in all areas. We know that we have to work extra hard in the Gross motor and Fine motor skills but overall she is making improvements and that is our goal..improving is all that matters! One other thing we have taken into consideration is over the last year Emma struggled with seizures from Aug-October. That 3 months of seizures caused a huge delay in her development, during her infantile spasms she lost a lot of progress that she gained because of those stupid seizures. So once we were able to get her on CBD (cannabis) Oil our world brightened. Her seizures were controlled, she started lasting the full hour of therapy and progressing so much more than ever before. So for us we like to say she's only been working towards her 2015 IFSP goals since Nov. 2015 instead of Aug, once seizure control started. So instead of saying she's progressed this much in a year we look at it more like 9 months instead of a year.

"Inchstones get us to milestones"

Soap Box WARNING: let me start with this...hearing that your child is delayed is no fun especially when they use the word severe :(. But once the shock and sadness wears off get moving!!!! What I mean by this is, if someone in a professional position tells you that your child is delayed or seems to be a little behind in any area please don't wait to get them assessed. Sometimes they get assessed and it's nothing and sometimes there is. Speaking as a mom who has gone through it I know it's hard to admit that something is wrong with your child, but standing back and not helping your child in every way possible is not the answer. Now speaking as a teacher I promise it benefits your child to get them assessed before they are so far behind it is hard for them to catch up. So I am begging you do what's best for your little kiddo even if it hurts you at first because it will benefit them FOREVER! ok stepping down......

Here are some fun pictures with lots of INCHSTONES 

and even some we would call MILESTONES!

Best Big 

playing with a toy on my tummy during therapy 

Best Friends from the moment they met 

This little lady moved her way off the blanket nice job!

Hanging out at a concert gotta have our awesome earmuffs and wubbanub

hanging with her BFF Abby (Abby also has Lissencepahly) 

Thank you PJ's For Fighters Emma loves her jammies and her cuddle puppy

Emma was also given a handmade blanket from Hope Blankets we love it!

Hanging out with this beautiful Princess, Belle

Someone just noticed herself on snapchat LOL

We are doing shirts again if you are interested here is the link: https://www.bonfirefunds.com/embrace-life

Bear Lake Raspberry Days

Practicing holding a baby so she can hold her new baby cousin coming in Jan. 2017 yay for girls!

"Love the Little Things"

Tummy time is always better with big sis and Mickey Mouse

Someone loves her chair 

Such a great boater

what big sister is starting kindergarten ahhhh

summer schedule is over back to reality....these two aren't adjusting the best

 

exhausted after therapy

loves eating new snacks

excited to try new earmuffs 

cutie

snuggles all the time - these two are our world

HERE ARE SOME FUN VIDEOS HOPE YOU ENJOY!

Playtime

head control practice

First outing in her wheelchair stroller! Thanks to the Nelson Family, We love you Charlee!

Big sis had a milestone too she learned how to ride without training wheels! 

Great Job Ava we are all so proud of you!

Emma loves playing with the slinky

Emma held her bottle....HUGE milestone

Emma telling me NO....LOL I loved it!

Belly Laughs with big sis

funtimes

What did she just say?!?!?! Listen carefully at 42-45 seconds

Someone loves Cake...well frosting as least haha

Happy 17 Months Emma Lyn Tapia

I WILL LEAVE WITH YOU A BRAND NEW VIDEO THAT NO ONE HAS SEEN YET! EMMA WAS WORKING ON HER HEAD CONTROL IN HER FUN BOUNCER AND LOOK AT HER LEGS BOUNCING HER LIKE CRAZY!

so proud of all your hard work Emma 

Until next time I hope you all are Embracing Life and all that it has to offer. Slow down and enjoy every second that you have, it goes by too fast don't miss out! Emma has taught us this and we love to pass along that message. Never take one moment for granted. Thanks for all the love, prayers and support we can't thank you enough. We would love for you to help share Emma's story (on all social media sites) to create awareness for Lissencephaly and the benefits that CBD oil can give to so many other people (kids and adults) I pray that one day everyone has access!

Emma's Facebook Page: Http://facebook.com/embracelifeemma

Instagram: embrace_life_emma

Don't Stop Living....Live Even More 💜

This post is going to be a difficult one for me because as much as I truly believe the title of this post it has been very hard for me to actually do it. I know we need to live and I know we need to be happy and content with our "new normal" I just wasn't sure how to do that and feel comfortable and not scared out of my mind. Well this summer I believe I can now say I not only believe the title of this post but I have started to live it!!!! Let me start from the beginning......

On March 25, 2015 the words lissencephaly changed our world and twisted up into a big mess. A mess I didn't know how to clean up and didn't know if I was suppose to know how to clean it up. That day I wondered... would our life ever be the same, would we be able to do what we love, would we ever go on vacation again. How could I ever leave the house worrying about seizures and other medical issues that we worry about daily that could happen. Months after we left the hospital we didn't go many places for a couple reasons; first reason I'll be honest I was SCARED, it was March and flu season was still a little active, Emma was sensitive to illness and we still didn't have seizures under control and we wanted to be in a place we were comfortable when they happened. Once I had to return to work we had to venture out a little. The girls went to my parents (we were so lucky) so that was very very helpful in that I wasn't as nervous as I could have been. I packed so much and called and texted a ton. I hated putting someone else in such a scary position. After we started to losen up a bit and actually went to Bear Lake for the weekend Emma started to have Infantile Spasms (another type of seizure). Again we were scared and started to stay home again due to seizures and meds that compromised her immune system that was already sensitive. We had to stay pretty quarantined at our home for about 3 months 2 weeks on, 2 weeks off and then 2-3 months after that to get the meds completely out of her system. We were drained I felt so nervous to go anywhere I didn't want her to get sick and it to be my fault the guilt was just too much. Them winter came and we again were scared never letting anyone hold her and only ventured out if needed. 

Emma started CBD oil in October of 2015. It was soon after that we got some seizure control and we felt more comfortable going out. But it wasn't until February that I got the feeling of "we've got this". It made me think back to something a great friend told me...."all you need to do is find your new normal and you will be just fine" thank you Brytten you saved me with these words. You helped me realize we need to live,  our lives are different than before and that's ok we will figure it out. We took a trip over Easter that was amazing and we actually ran into Brytten and it was the best feeling to see us both living our "new normals" the best way possible and loving it! Since then we have been out sometimes all day at the zoo, movies, lagoon amusement park, water parks, the rodeo, parades and even had a camp out in a tent at Lagoon, yes a TENT. All of these activities may sound simple but a year ago I never thought this was possible. We will build to bigger things, save some money and hopefully one day Disneyland/Disneyworld!!! Saying Disneyland/Disneyworld and Emma in the same sentence was heartbreaking to me a year ago, now I can't wait for that day to come not sure when it will happen but I want to see both my girls together at Disneyland/Disneyworld. Saving, saving, saving.....one day!

Yes, I have to pack way more than I ever thought including emergency seizure meds, washcloths to cool her down if it gets too hot, medical info etc...but that's ok because I no longer feel like a prisoner. I am Brandon's wife, Ava and Emma's mom and I am helping them to have the fullest lives possible. We are going to live and love every second of it.  We will try not to be scared to venture to new things. Ava and Emma deserve this..Brandon and I deserve this. So if your child has recently been diagnosed please know there is a future a beautiful one, maybe not the one you planned but an even better one....I promise. From the words of an amazing super heart mom, Brytten, find your "new normal" you've got this. 

I do however feel I owe a lot of this new me to CBD Oil because Emma's quality of life has changed drastically. She smiles and laughs everyday, She has been 152 days seizure free (knock on wood) and she has so much more drive to learn in therapy. I have never felt so strong about something as this. It's not only changed her life but our lives too. And sometimes I believe it could have saved her life. If you will recall she was on 3 seizure meds and still having seizures. But yet she was a zombie and very cranky (especially on pred.) So happy I have my baby girl and even more blessed to know who she really is. I don't know if I would know her if it wasn't for CBD oil. Feeling blessed to have access and pray everyone who needs it will someday get to feel themselves again or even find themself like we found Emma. 

Here are some fun pics of our recent summer ventures. Again nothing huge to most of you but to us and our "new normal" these are huge!

These are the smiles and laughter that I always talk about! This is our Emma Girl :)

Having fun at Bear Lake

Lagoon Fun

Waiting for the parade to start - Parade was a little over simulating but we worked through it (we are searching for the perfect noise canceling headphones

Happy 4th of July

Napping before the parade

No words....<3

Enjoyed Fireworks and she handled them much better than the parade. These 2 love eachother so much!

Utah Falconz Football Game - Good luck this weekend Falconz - GO FALCONZ!

Ava helped Emma make her first Build - a - Bear

Emma can now play with big sister on the swing set and she is pretty happy about it!

Life is Good

Swinging Beautys

Resting up from so much Summer Fun

Lagoon Campout....IN A TENT
(this was a huge step for me especially with no hookup for her Owlet but I lived lol)

Bull Rider - made it all 8 seconds good job Ava

Celebrated 16 months at the Days of '47 Rodeo - Thank goodness for ear plugs - still dont have headphones

Rodeo

Emma can now roll to her side in her bed. She is getting so strong the mattress use to keep her from rolling she wasn't strong enough...well look at her now. Thank goodness for the Owlet it helps me sleep when she's moving all over.

If you didn't already know....I/we support medical cannabis in Utah!

Here's to more adventures and living life to the fullest. Our lives are precious and were ment to be lived. So don't let the unknown scare you away from living. Let's Embrace Life and live it to the fullest! 

~ Goal.....DISNEY!!!!- We will make it and I am so excited for that day!~