Embrace Life - Emma: February 2016

2/28/16

Things Change...But It's Our New Normal

The other day I had a friend come over and she seen all of the adaptive items that we have for Emma and she said how she would have never thought about needing some of these items just for her everyday life. I agreed and mentioned that I too had never heard of some of these items before but now it's our new normal. I am starting to see things in a new light, by that I mean how can I make this work for Emma. I thought we had all the baby items needed because of Ava but boy was I wrong, not many of them work for Emma. So I thought I would share some of the items that we have bought for Emma to help her have better quality of life and some things help mom and dad too!

We had to buy a better baby carrier for Emma one that fits her body better. She has such high muscle tone I wasn't able to use the carrier that we already had for Ava. This has been a life saver (as long as it's not hot, this girl is a heater)

Emma can't sleep flat too often for a couple reasons, first of all she has major reflux and will gag throughout the night if she is not propped up (aspiration is something that is a huge worry for kids with Lissencephaly). Second she still has the startle reflex like newborns have and so when she throws her arms out to the side it wakes her up and scares her so badly :( So with this Day Dreamer bed she is able to sleep on an angle and also the sides are high enough to catch her arms when she gets startled. Swaddling use to help with the startle reflex but sadly she is too big for all the swaddles now :( but they still fit under her arms and she can be swaddled from the armpits down. The socks on her hands are because for some reason her hands get ice cold at night. The WubNub binky is amazing too!

This next item is a life saver for mommy! I didn't realize how much bathing my cutie would kill my back. For the first 2-3 months bathing was a breeze but once she started to get bigger and she no longer fit in her infant tub things started to get harder. Trying to hold up a 10 month old that weighs 17 pounds in the bath like a newborn (she cant sit up or control her head much), is very hard work. We tried a ton of bath inserts etc but nothing worked. Finally through some friends on a Lissencephaly group we found the Primo bath and it is amazing. Bath time has become fun and easy again.

It is molded to fit her body and she can't slide down!!!

This next item is a Tumzee another item we found through friends in a lissencephaly group. It helps Emma with tummy time and helps to let her arms be in front to practice bearing weight through her hands.

We had a high chair for Ava but it didn't have straps over the top and it didn't recline so we had to invest in one the reclines and has the supportive straps that Emma needs.

Emma is unable to hold her bottle at almost one years old and we try everyday to help get to this goal. It is a battle everyday but this little contraption has helped the process along. Somedays she wont even touch it but other days she is more willing ;) This was a good day :)

Sitting up is very hard for Emma because of her lack of head and trunk control. This cool item is called a Hugaboo and it helps assist her in sitting up and practicing head and trunk control with a little more support than other sitters, for example a bumbo gives her zero support to practice in this sitting position. After the age of 7 months of age kids need to be sitting up as much as possible to help in many areas of development including vision. There is a whole new visual field being used when she is sitting instead of laying down. She loves to see the world in an upright position. This is also helping her bear weight on her hands if you notice in the picture below this was a good day actually a great day (both hands down happen like 10% of the time lol)!

Here is Emma practicing her head and trunk control in the Hugaboo!

We have another sitter on its way thanks to the Angel Hands Foundation called a GoTo Seat from Firefly. I am over the moon excited about this seat. As I mentioned above about her visual field changing and needing to develop even though she is unable to sit up so we need to provide as many opportunities for her to sit up as possible and I believe this seat will be our saving grace! This seat can be put in a high chair at restaurants (poor thing still has to sit in her car seat and she wants to look around), it can go in a shopping cart mommy is so excited for Emma to look around at all the people and things in a store, a swing, and wagon, the possibilities are endless. Big sis is excited for her to sit and play on the floor with her. Emma has a hard time playing in her sitting devices she has now because she is so focused on trying to sit up that she can't pay attention to much else. So needless to say we are very grateful to the Angel Hands Foundation for making this happen for Emma and our family.

World Rare Awareness Day:

World Rare Disease Day is tomorrow Feb. 29, 2016!!! We are asking for your support in representing Emma and many others who are living with rare diseases. We ask that you please wear jeans, Emma wristband, jean ribbon and/or purple (epilepsy). Show your support by posting a pic and tagging Emma's page or using #embracelifeemma #WRDD2016 #lissencephaly #utahrare  

Embrace Life Emma Shirts:

Don't waste anymore time because it is running out! Only a couple more days to make sure you get your Embrace Life Emma shirts. The fund closes on March 2nd! Here is a link to get yours ordered today before its too late! 

LINK TO ORDER SHIRTS https://www.bonfirefunds.com/embrace-life

Here is what the shirts look like :) They come in youth, unisex, ladies, long sleeve, and hoodies

EMBRACE LIFE

2/15/16

Happy Valentine's Day 2016 ~ Emma's First Valentine's

This weekend we celebrated Valentine's Day almost everyday lol. So much fun to be together and be healthy. Emma is feeling much better, she has a follow up on Friday to make sure she's in the clear but we are very hopefully. She is back to her cheerful self. Love you all! 💕

EARLY BIRTHDAY PRESENT
Emma got an early 1st birthday present from a great friend this weekend. We love this beautiful quilt it is too perfect for words so here is a little clip to show you how amazing it is. Thank you Liz!

EMBRACE LIFE <3

2/11/16

Looking Back....

This post is all about looking back on our journey to becoming parents and things that happened during my pregnancy with Emma that all make sense now...

It all started back in July 2009 when we found out we were pregnant. We were over the moon excited about becoming parents. But then sadly our emotions of excitement were replaced with complete sadness. We found out that we had a Blighted Ovum (link) and my body was not recognizing it and the sac just kept growing. Finally at 12 weeks I had to have a D&C it was a very sad moment for us the realization was all too real. We decided to take a break and recover from this emotional roller coaster before trying to conceive again.

Then finally July of 2010 we found out we were pregnant again!!!!! This time my amazing OB let us come in early for an ultrasound to check to make sure it wasn't a blighted ovum again. We were thrilled to hear a heartbeat, it was our little Ava we felt so blessed in that moment that we were going to be parents. The pregnancy went pretty well until about 14 weeks and I started spotting so I called my doctor who rushed me in and we found that I had Placenta Previa (link). We were so scared to get this news, but we were told that as my uterus grows for the baby that most likely the placenta will move with the uterus and the previa would go away on its own. About 15% of women are diagnosed with some degree of previa in the second trimester and 90%will resolve on their own. 1 in 300 will not and will require c-section delivery and can become dangerous. Well guess what folks I was that 1 in 300 and not only did I have placenta previa but complete (full) previa not just partial. I started to have lots and lots of bleeding at about 33 weeks and rushed to the hospital where they life flighted me to IMC another hospital because they had a NICU for Ava and a blood bank for me. Luckily, we were able to keep Ava in for 3 more weeks (in the hospital) went home for 5 days then had a scheduled c-section at 36 weeks because I kept bleeding. She was perfectly healthy at 5 lbs 17 in long and not one moment in the NICU.

Then two years later in 2013 Ava was going to be a big sister!!!! That lasted for about 4 weeks and then the spotting started again we went to an ultrasound and to our surprise it was a blighted ovum again...this hit me hard but not as hard as the first time. I felt blessed to have Ava and that helped me get through this loss. My body again would not recognize that there was no baby so I had to have another D&C.

July 2014 we got another positive pregnancy test we were scared and excited all at the same time. We got in for another early ultrasound and we heard the best sound ever...a heartbeat!!! Tears of joy doesn't even begin to explain how happy we were that Ava was going to have a sibling. As time passed we kept a close watch having Dr appointments weekly and everything was going perfectly. It was time for the decision if we wanted genetic testing done and we said yes, we did it with Ava and so let's do it again. Later that week we got a phone call from the Dr office and it was the doctor I knew at that point something wasn't right. She explained to me that my numbers came back a little off so she recommended that we got get an extensive ultrasound done to check for other "markers" to see if the baby might have something like Down Syndrome. We of course scheduled right away to get that ultrasound down because the wait was killing us. 5 days later we had our extensive ultrasound showing no extra markers but to be safe they asked if we wanted another blood test that was 99% accurate or we could do an amniocentesis. We were set on no amnio because we knew no matter the outcome we did not want to lose this baby and the amnio comes with chance of miscarriage. So we did the blood test that checks the following chromosomes 13, 18, & 21. Seven days later we got the results....we had a perfectly healthy baby girl. We celebrated and cried knowing everything was going to be ok. We didn't tell many people because we didn't want to raise emotions if they didn't need to be. Well now we know that Emma does have a genetic disorder because she has a deletion on chromosome 17 which wasn't tested for, but that was the reason for the numbers being off in the first genetic test (makes sense now). During the pregnancy Emma had the "hiccups" A LOT, they would start fast and then slow down. Now I know that also wasn't the case and that poor little girl was having seizures in my stomach. I never connected this until we were at primary children's hospital and I sat and cried as I watched her have over 20 seizures and get the hiccups right after, the rhythm was exactly the same as when she was in my stomach. When she was delivered via c-section one of the nurses said wow her head is to tiny, this is also a trait of children with Lissencephaly. There are so many things we could have taken as a sign to know about Emma's condition before her delivery and seizures at 4 days old, but I wouldn't change it for the world because for 4 days I had a perfectly healthy baby girl and we all got to bond as a family and Ava got to hold and snuggle her sister. If we would have known before I doubt we would have got those precious moments for 4 days, before we spent a week at Primary Children's Hospital.

These precious moments would have been missed! <3

So needless to say our journey to becoming parents has not been an easy one, but we feel so blessed to have our two beautiful little girls in our lives.

2/4/16

"Charlee's Law" - We Love You Charlee

Charlee - See I bet you are already in LOVE with this cutie pie <3

To Start off this post I would like to wish Charlee a Very Happy 8th Birthday (last week). This little Angel captured my heart and I thank her everyday that she did. I feel that I was suppose to meet Charlee and her amazing family. They were meant to be in our lives. I also believe that Emma knows Charlee and they spent time together in heaven, there is not a day that goes by that I don't think of Charlee and her family. Charlee sadly passed away in March of 2014, but she left us with so much joy and hope. If you would like to learn more about Charlee and Battens Disease you can read more on her blog and/or facebook page. I promise you will fall in love with her just like we did.
Here is her Facebook page: https://www.facebook.com/charleesangelsbenefit/info?tab=page_info and here is her website: http://charleesangelsbenefit.blogspot.com/

Everyday that passes we never know if Emma will have a seizure (or how many she will have) and sadly this was the same for Charlee. We have tried loads of medications and none of them have seemed to work. They would make Emma so tired and she would sleep all day, seizures kept happening and she stopped eating. We were so scared about what to do next we had tried so many medications and she was still having seizures and she wasn't "there". She was just present with little function because she was so tired and the seizures were wiping her out! Finally it hit me CHARLEE!!! Charlee and her family fought to get Cannabis oil legalized here in Utah for people with Intractable Epilepsy. However, it's not as easy as it sounds. There is a process you have to go through in order to be considered for a Hemp Card here in Utah. Our first step to qualify was Emma had to have 3 different failed seizure meds, sadly and thankfully Emma had this requirement before she was 7 months old. Second we had to get paper work filled out and approved by her neurologist to have the proof that Emma has intractable epilepsy and 3 fail seizure meds. After this we had to take the paper work filled out by the Dr and ourselves and deliver it to the State Department of Health. We had to pay $200 for our Hemp Card. This card is only good for one year and then we have to renew it for $50 every year after that (unless you miss the deadline then its full price again). The downside is all of this is an out of pocket expense including the purchasing the CBD oil, we also have to guide ourselves through the use of the oil because legally our Dr can not help us with dosing thank goodness for the Realm of Caring and CW Hemp. Yes, it is costly but so so worth it. We worked hard along side Emma's neurologist and she is fully approved to use CBD oil YAY!!!

In previous posts I have been very vague about Emma's meds just stating that we were trying a new one this was because I didn't want to jinx anything before we got our own results from the oil. I am proud to say that Emma is on CBD Oil and it is doing wonders for her. Her seizures are under control and her progress overall has improved so much. We have got to see her smile, hear her laugh, and most importantly we have been able to see who Emma is and we love her personality so much! I hated to see her so drugged up on meds. Everyday that I give Emma the CBD Oil I think about and thank Charlee and her family for fighting so that so many families get to see and feel the benefits of CBD oil.

Emma's Family with Charlee's Amazing family

Emma with Charlee's Parents - Catrina and Jeff Nelson

Results of "Charlee's Law"