Catching Up

Seems like we have just been so busy lately I haven't had a chance to update.  Since my last post, Levi's seizures have gotten worse, and then better.  We increased Phenobarbital to 8mls last week, and 9mls this week.  I did not expect to see any improvement from the Phenobarb, I guess because he's been on it since he was 3 weeks old, and it controls the focal seizures, not the Infantile Spasms.  Well, I was wrong!  Monday and Tuesday the seizures decreased a bit, and yesterday they were drastically decreased!  It's noon now and he's only had 6 spasms and 2 of the ticking/stiffening seizures!  At the bad point he could cluster 10-20 spasms in one episode, so this is HUGE!  I'm so glad!

Tomorrow the PT is bringing a stander for Levi.  I'm super excited about this!  If he does well, it means that he can have the brace off more often because standing causes his hips to bear weight and develop normally.  We have already been doing weight bearing exercises, but I still worry when I have the brace off for very long.  It's challenging sometimes to find a good balance between wearing the brace, working on therapy, and trying to give him a nap in a position other than on his back.

Levi has been crying at night again.  I don't know why 7:00 is the magical hour, but he cries up to 2 hours.  It's not like it was when he used to scream, but it's still upsetting.  I believe it's his teeth, in combination with being overly tired and fighting sleep.  His little gums are swollen and have bumps everywhere.  Come on and  pop through already! lol

Otherwise he is doing very well.  We see the epilepsy expert on Monday, and looking forward to it very much!  I'm praying that God sheds light on the situation and we will leave there with some answers and solutions.  I'm ready for these seizures to GO AWAY!  Thanks to everyone for your prayers!

Seizure Diary:

Saturday 8/6: Spasms 110 in 16 episodes; Ticks - 11

Sunday 8/7: Spasms 73 in 18 episodes: Ticks - 5

Monday 8/8: Spasms 42 in 9 episodes: Ticks - 5; Stiffs - 6 (Since the stiffening/ticking seizures have changed and sometimes only tick or stiff, I decided to break them up.)  1:00am he had a combination spasm and tick at the same time.)

Tuesday 8/9: Spasms 62 in 12 episodes; Ticks - 1; Stiffs - 2; Both - 7

Wednesday 8/10: Spasms 43 in 10 episodes; Ticks - 1; Stiffs - 2; Both - 7

Thursday 8/11: Spasms 23 in 12 episodes (this is the least amount he's EVER had!!); Ticks - 2; Stiffs - 5; Both - 12

Me and my brother Tommy :)

Tummy Time!