Emily is using her own version of at least 4 signs now. They are all one handed signs as she still has trouble bringing both hands together. She showed me “eat” yesterday and this morning she signed “milk”. These are in addition to “want” and “bye bye” that she already had. Our pediatrician said that signs count as language so we have ourselves an official communicator. This takes a huge weight off my mind as far as the question of whether Emily will ever talk. She understands and now uses language. Huge.
Emily and I have started another round of 20 HBOT dives and are halfway through. I really feel this has a lot to do with her sudden progress. I’ve seen more changes in her left sided issues like much less toe pointing of her left four. And of course the amazing jump in head control and now balance! Can’t recommend this treatment enough for stroke survivors.
I am watching Glennon Doyle Melton of Momastery’s TEDx talk and she just quoted Georgia O’Keeffe who said “…making the unknown known is what is important”. It struck me because that is why I started this blog, to make the unknown, known to people who need it. I am so incredibly excited to be living in a time where information is exploding exponentially and the things that I can learn and acquire that might help my daughter and people like her are appearing so fast that I can’t keep up. Down deep in my heart I know I was born to research. I practically do it in my sleep – actually I probably do do it in my sleep. You’ll have to ask my husband on that one 🙂 I strive to know every little detail about new research on brain injury, hypotonia and cerebral palsy. And if I don’t know it, I am connected to the people who do and I ask A LOT of questions. I really want this to be a place where people can come for information and if I don’t have it for you I can get it! I love that we are living during this time and I want to serve people with my talent. Today I spent some time getting our equipment company to start carrying a new piece of equipment (called the Headpod) invented in Spain that my Facebook friend in the UK told me she is going to use with her son. How fun that I was able to inform our PT, OT and Orthotist about this and that they all see kids that will be able to benefit. I am definitely finding the silver lining in this dark cloud. Seeing my princess, Emily, progress with all this help is the cherry on top of my hot fudge sundae of a life. 🙂
I got a call today from Emily’s hematologist that all her blood work and genetic tests for future clotting and bleeding problems came back normal! She is at no greater risk than the general population for a future stroke. We still don’t know why she had one in utero but ill take it!!!
As Emily’s core gets stronger we are moving on to play with toys in a new way. Bending down to pick up a ball and then place it on top is brand new this week!!