Our Update with Everlee is what I expected!!!! She is a ROCKSTAR! I have said it all along. She is working her butt off during therapy, which she has 5 times a week. She is rolling over and just recently started sitting by herself...I plan on putting video up here as soon as I know how!!!! Her Ortho is really impressed with her progress and still sees no need for bracing of any kind. The fact that she is going to walk it so amazing but if she can do it with no assistance, I will just be floored!:) We continue to work with her on the urology side, we continue to catherize her and we recently changed up her meds which should help avoid any bladder and/or kidney damage. That is one thing that is always on my mind, well that and the Shunt. Which reminds me....Sammy the Shunt has been working for 4 months now...isn't that just awesome??? We think so. Everlee does had an appointment with an opthamologist to check on one of her eyes that seems to be turned inward...we will have to wait to her about that. She is turning into a bit of a little piggy!!!! Almost 18lbs, wow! But we worked hard for those lbs:).
As usual, I hope you all are doing well....next time I will have video and pics for you. Hope you enjoyed your labor day!
3 comments:
Hello, I came across your blog a while ago just cruising around and I wanted to say that I think your family is amazing for what you guys have endured and your ability to stay positive! Your newborn baby girl is gorgeous, mine is 7 weeks!! They are a joy. xoxo -april
Hello there Leyva's! I am just so beyond elated at all of the progress Everlee is making! I know all of the hard work that goes into it on your ends as parents as well and just wanted you to know that you and Scott are amazing parents!! Also, how wonderful is your jewlrey line! I too started an at home business with my childrens decor and it is so fullfilling to know that you can express yourself and have something for you that doesnt take too much time away from the day to day needs that both Everlee and Elijah have. Way to go girlie!
Hi Mrs. Leyva,
I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.
Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.
I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.
Warmest regards and happy holidays,
Courtney
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