So I am sitting in the hospital bedside with Lily. Currently. Like right now. I thought hmm I have time I could do my next post from spinal fusion, but I thought nah. That would take way too much energy. So I am going to write about this hospitalization. Like the one going on right …
For 7 years Lily has been on Sabril. She was on it before it was called Sabril. We used to call it Vigabitrine. We used to have to get it from a Canadian pharmacy, it wasn’t FDA approved for many years.Now that it is legal here it is cheaper for us to get (ie insurance …
Unfortunately I heard what I knew I would hear.Lily went from 23 degrees to 45.We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.Got rx to go back to wheelchair clinic, I called to schedule, but gal was …
I suck at posting lately. Total suckage.We had a heck of a time with Lily getting over that surgery. It was awful. 2 full weeks of pain and an entire week to get her to poop. It was exhausting for all parties involved. Lots of crying. For all parties involved.She is basically back in action, …
Well I post Lily’s recovery on Saturday to have her wake up on Sunday with a 102.5 fever and her just miserable. The on call Dr (yes you better believe I called him when he was on the golf course) said that is was normal and they get worse before better. Well he wasn’t kidding! …
Lily’s surgery was 10am on Tuesday morning. The surgery was the quickest one she has ever had and we were back in recovery in no time just watching her beautiful face sleep. She always takes a long time to wake up after anesthesia so we knew it would take her nearly an hour before she …
We got a call from the school nurse today. They said Lily was in the stander and turned super pale and her lips were light blueish. Ack! The nurse said she was really sleepy when they brought her into her office and she had a hard time waking her up. But she did wake up …
Ok Oliver’s hearing test update. Not as I thought. Apparently he has some fluid behind his right ear, which seems to be at every Dr. apt we have ever been to, which is causing him not to hear as clearly in that ear. At one point during the hearing test there was a higher pitched …
I got the appointment for the consult with Neuro Surgeon… March 23rd. Gahhhh!I called Neuro and said hey this doesn’t really work with the amount of seizures she is having. They sent an email to see if they could get us in any sooner and asked to put us on cancellation list, but as of …
Lily has not been sleeping, then last night she had a huge grand mal, then became inconsolable then she had another big one. Sharon (her awesome care giver) fed her a light meal, gave her dinner meds and a quick bath and we put her to bed and she did sleep all night. I am …
Calm Amongst the Chaos 