October 23, 2011
our plan forward.
In the last post I asked for prayer regarding Pin's neurologist meeting. Thank you so much for praying!
The appointment was last Friday and it went REALLY well. Her neurologist was thrilled to see how Pin looked, acted, etc. She kept showing him all her tricks and he was very amused and encouraged. We have started a S L O W reduction on her spasm medications....after six weeks, she will be down to half of the initial dose. If all seems stable, then we will take her off of her second medication (topomax) completely. Her physician said that based on her last EEG, it is possible that if we removed all the medication she would be seizure-free. My heart is very guarded on this one, but praying toward that end fervently.
As I type this update, I am sitting in a near dark hotel room in Pewaukee, Wisconsin listening to the hum of a loud sound machine. Jeremy is on a plane headed to Las Vegas and Pin is sleeping 25 feet away from me. In the morning, Pin and I start "therapy boot camp." It runs from Monday to Friday and she has 4 to 5 double sessions (2 therapists/1 child) a day. Some kids make huge strides, some sleep through it all and I'm praying we just get somewhere between the two. Jeremy would love to be here with us but is in the middle of earnings season and on top of it, has a huge conference to attend. I'm just so grateful that his hard work allows us to try everything we can to get Pin's lil' body moving.
Pin turns 18 months on Tuesday and is still not sitting up yet. Her one "main goal" that we are working toward this week is "independent sitting." Every single session is working towards that milestone.
-Our safety as we are away.
-Pin's body would start to move: legs kicking, arms reaching & hands grabbing.
-Pin's overall strength and balance in her core so she can sit up.
-More connections would be made and retained in her brain.
-I would be patient with Pin.
Thank you. We love you all.