Back to School 2014!

Good thing for the SBF facebook page and twitter updates, because any other updates to the website have been pretty minimal recently. I’m a busy mom, what else can I say! I will try to give a quick summary of the past few months since my last post. As you probably read from my last post, Faith had a rough winter. Faith had a great three months from her last hospitalization at the beginning of April until mid July when she was hospitalized for pneumonia. Then, at the beginning of August she was hit with rhinovirus and treated yet again for pneumonia. Thankfully, these hospitalizations weren’t too lengthy and we were able to manage her care at home as she recovered. Faith started back to school on August 25th for her last year of preschool. She is currently in a self-contained classroom for children with physical impairments. This year will involve testing to determine her school-age educational diagnosis and the big decision of where Faith will go for kindergarten. We are hoping for a healthy and happy last year of preschool! So far, so good!

faith first day of school 2014-15

Faith has made progress with her conformers and just had another new set made this month.  She has grown quite a bit this past year in general so that may be helping with the eye sockets as well. She was also recently fitted for a new pair of AFOs (ankle and foot orthotics). This new pair will be more flexible and dynamic. Hopefully, this will help us get her standing for weight-bearing purposes. We have not had much success with other types of AFOs due to her movement and tone. We are still in the process of finding the right wheelchair for Faith. She is outgrowing her current chair and is very uncomfortable in it. It does not work well for Faith as she is constantly moving and struggling with her tone. We are still awaiting results of Faith’s whole genome sequence which will hopefully give us more clarification or additional information to help with Faith’s treatment and care. Faith has her fussy moments but continues to smile and laugh and seems to be enjoying life! She still loves music and water and overall is a happy little girl! Faith has a big birthday coming up soon! She will be 5 before we know it!

For more frequent progress updates about Faith, please like her facebook page Super Baby Faith or follow Super Baby Faith on twitter.

Keeping the faith,