After a pretty uneventful weekend, Thank God, we woke up to a pretty active morning. every time I get comfortable and let my guard down, i feel as if that security gets ripped away.
A week from last Thursday we had a tc and had to give Jake the emergency medicine. This medicine usually knocks most kids out the rest of the day, especially at the dosage Jake is given. Not our Jake...he slept about 45 minutes and then was back to his usual tornado self. One nurse in one of the many hospital stays mentioned that shows his personality...he is a fighter! The next 2 days were pretty rough, we were averaging 20-30 seizures a day. These mostly consisting of "drops." Although these aren't as scary to watch as the tonic clonics (tc's, grand mal), these are probably more dangerous, as he falls and hits his head on our hard woods, the fireplace, a table etc...try to keep a kid who is used to runing through the house confined to the padding of the playroom! The next week we did get much better and were averaging only about 10-15 a day. This past weekend I only counted 3-4 a day!!
I think his little body is slowly adjusting to all the medication in it. He does not tremor quite as much as he used to. His drool and slurred speech have also seemed to improve considerably. I think we are slowly getting our little boy back. It does scare the heck out of me what all these drugs are doing to his body and his brain. I am assured it is all safe, but sometimes I find that hard to believe. This once very coordinated little boy now has trouble with balance, speech and holding a pen.
Addison is the biggest trooper through all this. She is my eyes and ears when I actually step away from Jake. I am coming to realize life is going to go on and I need to let him live. therefore, I have let up on he constant following him around "waiting" for him to have a seizure. This is where Addi has been amazing. She reminds Jake of his limitations (no climbing on the stools, table, windows etc), informs me in much detail of seizure activity ,and never complains! That little girl is amazing. She has been shuttled around from relative to relative , denied things that were once a staple for her, missed her parents, as they left in ambulances or er trips, and continues to be so strong and loving! I need an ounce of what that girls has!
God Bless~ Christine
My day with the Pioneer Woman
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