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.
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| Therapy with mom |
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| Look at those kisses she is giving to Ava |
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| She is so so close!!!! Keeping fighting Emma - Never Give Up! |
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| Working on head, neck and trunk control |
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| YAY First Pony Tail |
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| stop mom I am finished and it's Saturday |
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| Watching Football and working hard with daddy |
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| love new PJ's from Sams Club |
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| New headphones from Earmuffs 4 kids :) Love these so much! |
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| "Every Princess needs to Sparkle" |
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| Got new matching clothes they are thrilled and Ava loves her Belle shoes. Thank you Erin. Allie and Mia <3 |
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| Sitting up like a big girl |
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| Made it almost 2 whole minutes! |
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| "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!
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