4 Month Dr Appointment

Emma's 4 month dr appointment went great. He was happy to see that she was in physical therapy and doing such a good job. She's still eating great which is fantastic due to the fact that failure to thrive is a huge concern for children with Lissencephaly. His concern was also the high muscle tone in her arms and hands, so the same as the physical therapist and neurologist so that's good that they are all on the same page on what to focus on during therapy. Here are her stats:

Weight: 12 pounds 10.5 ounces {25%}

Height: 23.8 {25%}

Head: 15 {3%}

Strong little lady even when it comes to 4 month shots! Nice flex!!!!

           Physical therapy homework 

We see the physical therapists again on Wednesday to go over our IFSP (individualized family service plan) so that we can set Emma's goals for the next 6 months I will update again to share that info with you :) 

YARDSALE UPDATE: we are having another yardsale this coming Saturday, August 1st. Same place 9250 south Lisa Ave (2560 west) West Jordan, Utah. We had so much great stuff donated so we thought we'd have another one so here's your second chance 😉

SUPPORT BANDS: we are still selling support bands to honor Emma and raise awareness for Lissencephaly. If you'd like one leave a message on here or message me on FB through my page or Emma's page here is a link to her page. https://www.facebook.com/Embracelifeemma. If you do want one just let me know what size or sizes. We have small (child), medium, large and x-large. 

WANT UPDATES?!? sign up for the email updates located on the right hand side of this page (only viewable from desktop view or web version) Remember to Embrace Life and we love you all 💕

Emma is 4 Months Old & PT Evaluation

What a big day for little Miss Emma. It started off with a physical therapy evaluation to see where she falls in her ability level and what services she will need for the next 6 months. After 6 months we will reevaluate her goals to see what ones have been met and which ones we need to still focus on. Overall it went pretty well. As we suspected she needs to keep working on head control and neck strength. Another concern is her muscle tone. He brain sends too much to her muscles so they become stiff and hard to move. Her legs are doing great but her arms and hands are pretty stiff so we learned some ways to help her with that. We also learned that she will be needing some braces for her hands to help try to get them open more. They will hold her thumb out to encourage more open hands. Children with Lissencephaly their hands can become closed shut forever if you don't stay on top of the therapy to go along with it. Her eye development and social skills (smiling, tracking, giggling etc) seem to be right on for her age level so that was good news. We get the full evaluation and info at our meeting next week but so far we are pretty happy with how things went we feel excited to start physical therapy to help her succeed in anyways that we can. These things wouldn't be possible without everyone's help and donations so thanks for helping us help Emma to Embrace Life and be everything she can be. 💕

Cute video of our little Emma getting so close to laughing. I love her little giggle.  Love you all!

https://youtu.be/q-xr05G7ekI

Fundraiser Yardsale was Amazing

Last Saturday was our fundraiser yardsale and it was an absolute hit!!!! I can't thank everyone enough. From the kind people who donated items to the people who came to buy things, those who bought wristbands and those who donated time and money. We feel so blessed to have such great family and friends who for 3 days worked their tails off making sure the fundraiser yardsale was a success. We got so many wonderful donations that we are planning another yardsale tenatively for Aug 1st. I'll update you as more info becomes available. Thanks again 💕

Fundraiser Yardsale

We are so blessed to have such awesome family and friends who have made donations for us to have a fundraiser yardsale. This yardsale is going to have a huge variety of things from clothes to bikes and golf clubs. I promise it won't disappoint! Here is some info if you are interested in donating items or just coming to check things out we would love to see you! 

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❤️

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.