I am sorry it has been so long since I have posted an update on Sydney.  The last two months have been a bit of a bumpy ride.  Sydney came home from rehab on December 29th but ended up back in the hospital for a few days.  We also lost our Monday through Friday day nurse and our night nurse was out of the country.   The loss of our day nurse (and inability to fill that position) resulted in Sydney not being able to return to school.  So we have been muddling through trying to do PT, OT, speech therapy and working on cognitive skills every day on our own (in addition to filling all the gaps in nursing care). 

Sydney is working hard on trying to sit on her own and stand.  We try to get her into the stander every day.  She will need to increase her core and glute strength as well as get the brain to send all the right messages to fire the many muscles involved in walking.  She can kick and march with her left leg fairly easily now.  She can also kick her right leg out slowly.  Her right arm is still contracted but her left arm is amazingly strong!  She seems to have good coordination too - she can bat at balls thrown at her, write her name, flip pancakes, do puzzles, build complex legos and beat me at jenga. 

Syd is eating 3 puréed meals a day - no more tube feeds.   She also had her trach removed last week.  We hope she will be able to eat all kinds of foods and drink liquids soon.

Syd still can’t talk but we hope the removal of the trach will help her find her voice.  Unfortunately the aphasia makes it difficult to find words.  I swear she understands what we are saying.  She just can’t get the words out.  The one word we have been able to get her to say is “phone”!  First thing in the morning she will point to where her phone is charging.  I will ask her what she wants and she will whisper “phone”.

Syd spends a lot of playing games on her phone and looking at tik tok, instagram and facebook.  It seems like she can read some things.   She can “like” a message but needs help writing.  She is starting to type simple things like “hi”.  I was shocked she posted a video on Facebook or Instagram the other day all by herself!  I realize the platforms help generate content - but it was good to see her do it.  I encourage friends to send short texts. I think she can understand them and maybe it will motivate her to try to type. Please be patient with her.  She is relearning everything. 

Thank you again for you continued love and support!  We are wishing everyone a Happy Valentine’s Day!