At first I thought our "new normal" would be living life with lissencephaly, developmental delays, and seizures among other things. But what I didn't realize is our "new normal" is just that a new normal all the time LOL. We are definitely living day to day wondering what new thing will pop up for us to adjust to and add to our life like no big deal. Well two and half weeks ago Emma had to have surgery to place a G-Tube due to silent aspirating her liquids. Our hearts broke as we came to this realization. This was a must because who knows when it would turn to aspiration pneumonia and then we will be in big trouble. So with tears in our eyes and heavy hearts we decided a tube was going to be the safest thing for our little princess. One thing that hurt the most was the fact that she was gaining weight like a champ and she LOVES to eat. She was so excited every time she seen her bottle and she just started to help hold it. The good news is that we haven't had to take away all of there food orally just the liquids. She is still able to have pudding think solids, but we will retest this in about 2-3 months to make sure this is also still safe for her.
Oct. 18, 2016
Right before surgery letting us know it's all going to be just fine
This was surgery day and we were so worried that after all that fight to get insurance to approve the surgery so fast that Emma was too sick to do the surgery. Flashback to the night before surgery......Emma started coughing and was the most congested I had heard her in a long time, my heart sank knowing how badly Emma needed this surgery and the possibility of having to wait 2-3 more weeks could result in pneumonia. I called the morning of surgery explained to the nurse my concern and she said bring her on in and they would assess her because that coughing could be from aspirating and not necessarily a cold or illness. To be honest that never crossed my mind so we packed up and headed to the hospital at 6:15 AM. A HUGE thank you to my sister who came and got Ava to and from school for the 2 days that we were unable to be there. I was so nervous about how Ava would take it all but she handled all really great thanks to her Aunt Amber, so thank you so so much!
Emma right after surgery holding on to daddy tight
Once we arrived at the hospital 3 different people cleared her for surgery. We were so nervous and scared for our little baby to go off without us, especially with people she didn't know. Luckily Emma has fallen asleep right before we had to hand her over and she slept as they took her away. Our eyes swelled up with tears but we knew it was the right thing to do. As we waited in the parent waiting room for what was about 45 min to an hour seemed like 8 hours, especially when you hear CODE BLUE! Thank goodness it wasn't Emma and that it was canceled quickly (we pray for whomever that was). The doctor came out and said the surgery went great and she handled it like a champ and that we could see her in about 15 min. We were soon called back to see our little princess, she was still sleeping but she looked great. They soon moved us to our room where we would stay for at least 24 hours. Emma's pain at first was so much for her that she cried and cried. I felt so helpless, my baby was hurting and I couldn't stop the pain. This was really hard because Emma doesn't really cry unless she's really mad/hungry or hurting. Finally after some pain meds she started to get a little more comfortable, but still irritable at times. Big sister came to see her and that was good for all of us we needed some good hugs and comfort. After we finally got pain managed we just wanted her to sleep because she couldn't eat until 10:30 PM so that would have put her 24 hours without eating poor girl was so hungry. She handled all her feeds really well and started to wake up more and be talkative the next morning. I truly believe she needed food because she was a different little girl after that. We were able to head home that evening at around 7 PM.
She is tolerating her feeds pretty well. At first we had throwing up....A LOT of it. But currently she is taking 180 ml/hr. for those of you that are confused by that like I was 3 weeks ago, it means she gets 6 oz. over the course of an hour. I think that she missed her bottle, but now brushing her teeth is her favorite she gets to have liquid in her mouth, obviously not a ton but it makes her smile. Here are some pictures from her hospital stay.
Sister came to visit
Can it get any more precious???
Finally playing with her monkey "Charlee"
Oct. 25
Poor big sister now it's her turn at the hospital :(
We have been home for a week at this point and we were handling things pretty well. We were nervous to be on our own with both girls but we had to start at some point. The week prior Brandon and I both had the week off due to a school break called UEA. Well on this day I get a text message from Brandon asking what time my students go home, I didn't immediately get this message so when I finally did there was another message too that said call me when you can. I started to get nervous cause he NEVER texts me at work. Luckily it was recess so I sent my kiddos outside and called him. He told me that a vase from the top of the fridge had fallen and dropped on Ava's toe. He said he thought it was broken and the nail was barely hanging on.....lots of blood. After telling me this he proceeds to tell me that while he was cleaning Ava up she started screaming and pointing at Emma who was throwing up so he ran to her sat her up. Poor dad was covered in blood and throw up. By the time I got home we had 45 min to get cleaned up and get to the dr. (who is 20 min away but so worth it). He took x-rays yes it was broken but what needed to be done he couldn't do in the office because she needed to be somewhat sedated. So we called gma and gpa Allen and gave them a crash course in the G-Tube and we rushed Ava to Primary Children's Hospital. She got all stitched up and taken care of, needless to say this mom and dad were exhausted at this point. All we could do was laugh because this is what our new normal is.......expect the unexpected.
NOW
Both girls doing great and loving their new Pajama's!
Thanks Huber Family
Both girls are doing AMAZING! We definitely have two very strong and brave girls. This week coming up is full and very messy haha. We have an EEG on Tuesday because we were worried we are seeing some seizure activity, but when I sent our neurologist a video she said she couldn't be certain but we will get an EEG to rule it out, but both of us were wondering if it was more of a GI issue. We will get the results by the next day at our follow up appointment. Prayers that it is not seizure activity and that whatever it is we can get it stopped. Mom has PT conferences on Wednesday and Thursday plus sisters first conference on Wednesday, sister has dance Monday and Wednesday, but most importantly Emma has a follow up with her surgeon on Thursday! PHEW just talking about this week is exhausting. We will make it tho because this is just our new normal and we will embrace it and love every second we are given.
We had a great Halloween trick-or-treating with family and watching Ava in her first Halloween parade at school. Brandon had the day off and so we were both able to help out for her Halloween class party and that was fun for all of us too. We had a family costume this year...we were the Mario Brothers Characters....Brandon was Mario, I was Luigi, Ava was Princess Peach and Emma was Yoshi. Let me tell you about this purple pumpkin.... Ava was begging to be in charge of Emma's pumpkin this year so we of course said sure do whatever you want. This is what she came up with, a purple pumpkin for epilepsy, with a blue ribbon for lissencephaly, and hearts because she loves Emma so much. OMG can you believe this girl is only 5! Her knowledge and love for Emma blows my mind. We are so proud of you Ava and we love you so much! Hope you all had a fun, safe and seizure free Halloween.
Emma has started to play more and more with toys and we couldn't be more excited about it. Thanks again for all your love and support. We plan on putting shirts up for sale again soon and we are excited for new styles and color choices. We almost have our USA map filled we are only missing Vermont, so if you know anyone living in Vermont please share our cutie with them and have them share and comment that they follow! Here are some adorable pictures and video to leave you with a SMILE <3
This smile!!!!
Happy to be home from the hospital
So thrilled to get so many goodies from friends...THANK YOU!!!
one of my favorites :)
Here is our Map of the USA come on VERMONT!!!
Here is the start of our World Map. I am so excited to get started!
November is Epilepsy Awareness Month-if you wear purple this month please think of Emma and all other who
fight the epilepsy battle everyday. We would love to see you post yourself in your purple this month please tag us in your picture or post to Emma's page.
Emma sends you all Kisses! She loves to give Kisses awe so sweet!
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!
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)
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!
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!
