Since my last post Emily has had some pretty bad days.
Her seizures just went nuts. We made it through that rough patch with only one phone call to neurology, no hospital visits this time. We did get very close one night though.
I have had a very hard time ,emotionally, lately. I can handle having a child with disabilities, special needs, developmentally delayed-whatever you like to call it. I can not handle that fact that I have a child with very serious medical needs. It is hard knowing that her life if so fragile. Every attempt to stop or even slow seizures have failed and we all know that 100-200 seizures per day plus her 10+ clusters of spasms she still has daily is not good for her.
I have mentioned before besides our nurse who works 4 days/week we have no one that can help us take care of Emily. There is not one single person who can care for her if something, God forbid, happens to Joe or myself. I know that sounds morbid but that is something we have to think about. Don't get me wrong, we have a couple family members and some church members that have and continue to help us out financially and bring us delicious meals or bring over groceries. We are incredibly thankful for all of the assistance we get! We love getting cards in the mail or phone calls to check on us. Those things we truly appreciate!
Some days, especially bad seizure days, it is hard to deal with all of our daily responsibilities on top of everything with Emily. Dishes don't do themselves and the laundry just does not jump into the washer just because we are having a bad day. Life must go on.
So now that we are done with the bad stuff and complaining.... on to the good!
Emily has not had a seizure since Thursday at 2am. When she has seizure free days she does so much better with holding her head up and assisted setting.
She had her 15 month check up (it was actually 16 months though) and her head, height and weight at all way under normal but proportionate. The only thing we are watching right now is her hips. Emily legs tend to fall to the right when she is laying flat and she is going to be prone to dislocation so we have to try to keep her hips rotated to the left more.
|Trying really hard to set up|
|Giving her PT the "get off off me" look.|
|Holding her head up so much better|
|Emily loves her sensory cat!! It has 3lbs of rice in it to help with her sensory issues.|
|Thank you Colin for the wonderful gift!!|
|She loves it!|
Praying that this seizure-free streak will continue!!