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