7/10/15

Neurologist Appointment

Today Emma had an appointment with her neurologist and it went pretty well. We are still just watching for seizures and taking notes on the duration of each one. She didn't seem to concerned about the one on Sunday saying they will still happen we just don't want them too long or clusters of them. She weighs 11 pounds and 14 ounces 23 inches long, she was very happy with her growth. 

We are starting physical therapy to make sure that we stay on top of things for her developmentally. Another symptom of Lissencephaly besides being delayed developmentally is muscle stiffness so we hope that by starting early with physical therapy we can give her the best advantage as possible. 

I seen this posted on a FB page for Lissencephaly kiddos and I loved it. 

❤️Smooth is Beautiful❤️

7/9/15

Run 4 Rare

We are so thankful for Noah Coughlan and all that he has done to help raise awareness for the rare community. He finished his run on July 4th. We were so proud to wear our shirts to support him as seen in the post above. Here he is finishing up his run4rare. 

Happy 4th of July

First off I hope everyone had a happy and safe 4th of July. We had a blast with family at Bear Lake. Emma is still doing pretty good sadly she had another seizure on Sunday night that lasted about 20-25 seconds. I hope we don't see another one. We have another appt with her neurologist tomorrow, Friday July 10th so I'll update with more info after that appt. Thanks for all you continuous support. Here are some pics from an amazing weekend. 





6/20/15

3 Months and Seizure Update

Today our little bug is 3 months old! We love her so much and are so blessed to have her in our lives. At 3 months old these are the things she loves:

* eating!!!! eats 4 oz every 3 hours sometimes 2 hours
* playing with Ava (they talk like crazy)
* being outside
* weighs 11 pounds 4 ounces 
* loves being naked 
* sleeps about 5 hours at night 
* wears 3-6 months clothes 
* size 2 diapers 
* loves to splash in the bathtub
* loves snuggles and we love to snuggle her too 💜

Update: her meds were increased from 7.5 mg to 15 mg due to her weight and that has seemed to work at this point. She is adjusting well to the new dose, she was pretty sleepy the first few days but doing pretty good now with awake time. We haven't had any seizures since we started the new dose (knocking on wood). Fingers crossed and please keep her in your prayers. Thanks for the love and support emotionally and financially (youcaring account) we appreciate you all so very much! 

3 Months old - 6-20-15
Happy Girl - 3 Months old - 6-20-15

Loves holding onto sisters fingers - BFF

6/12/15

I Hate Seizures!

So this morning at 2:00 AM the thing I have been dreading most happened, seizures started again. We woke up to a blood curdling scream which took me right back to the first night home on March 23-24, 2015. My heart knew that she had just had a seizure, the first one since April 3, 2015. We calmed her down and she started smiling and cooing just like her normal self which made our hearts smile. Then again at 10:00 AM we witnessed another seizure which only lasted about 5-8 seconds but trust me those are the longest seconds of your life, time stands still. As I was typing this I stopped to eat lunch with Ava and Brandon,  while we were eating she had another one. This one lasted longer it was about 20 seconds and Ava was so amazing talking to her telling her she was there for here and rubbing her belly with me. Her eyes looking at me like help (not sure if she even is aware but it feels like it) are the hardest thing to see while she is seizing nothing breaks your heart more then to watch someone you love so much, let alone your child, go through something that you can't stop. We have been in contact with her neurologist and we are increasing her dose of phenobarbital because we are thinking it is because she is out growing her current dose. Our fingers are crossed that this will do the trick. Super happy when not having seizures tho :) Love this girl to pieces!
June 12, 2015 
June 12, 2015

June 12, 2015


5/24/15

#Run4Rare

Thanks to the amazing Noah Coughlan for dedicating a day to our sweet little Emma. Please follow his journey and give him the support he deserves. Follow him and read more about his run across America at https://www.run4rare.org

Here is his wonderful tribute to our baby girl: https://www.facebook.com/noahontherun?fref=ts\


I Still Would Have Chosen You!

I know the picture above is hard to read so here are the words that hit my heart hard and I knew Emma was ment for our family.

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you. If God had told me, "This soul would one day need extra care and needs", I still would have chosen you. If He had told me, "This soal may make your heart bleed", I still would have chosen you. If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you. If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you. If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you. If He had told me, "All that you know to be normal would drastically change", I still would have chosen you. Of course, even though I would have chosen you, I know it was God who chose me for you.

To go along with this picture I would also like to post a little story that a friend and my brother sent to us (one day apart, we were ment to read this story) to read shortly after we learned about Emma's condition. It is a great analogy on our life and our future we loved reading every word of it.

Here is the link where I read the story and I have also pasted the story below:
http://www.our-kids.org/archives/Holland.html

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.