Frustrating Day

Today Joshua had an appt. with a neuro psychologist to get testing done so we can capture his baseline cognitive functioning.  This baseline will enable us to test him later (6 mos., 12 mos., etc.) from now to determine if he has regressed in his cognitive functioning.  The appt. was scheduled from 8:30-2:00 so I took the whole day off work on FMLA, which means unpaid.  We get there and go over the history of why we are there which took well over an hour.  Joshua was good about playing with the toys while we were in the office during this time.  Then it was time to start testing.  I stayed in the room with the Dr. and Chip and went to the waiting room.  Joshua did good for the first few questions, but then grew tired of answering them (I think he was frustrated because he couldn't answer some of the correctly).  He asked for his Daddy and began to be uncooperative.  So, I stepped out of the room and Chip went in with him.  About 15 minutes later Joshua and Chip returned for a "break" and Chip told me that Joshua was not cooperating much.  Sigh.  We go back in after a break and we all go in this time.  Joshua is still uncooperative and won't answer the Dr.'s questions.  Big Sigh - need this assessment done and he won't cooperate and it is now looking like more days off from work will be needed as it is not looking good to finish today.  The Dr. suggests a "lunch" break even though it is only 10:30 to see if that will help.  So, we go out for a bit and get him some food and come back to the Dr.'s office.  We all go in again to see if he will cooperate.  He is more cooperative this time and does some of the test (games) with the Dr., but is still uncooperative at times.  We gave him frequent breaks, but were only about to accomplish 1/2 of the total tests that the Dr. needs to complete his baseline evaluation.  So, we need to go back for a 2nd appt. to get the tests completed.  Chip will be taking him back this Friday morning at 9:00 AM - I will be at work.  Hopefully they will be able to get through the rest of the tests on Friday and we won't need a 3rd appt.  The Dr.'s report will take about 10 business days after testing is complete and then Chip and I will meet with Dr. to get the results of the test. 

This afternoon I tried to call around to get Joshua on the waiting lists for physical, occupational and speech therapy and that proved to be frustrating.  A lot of places had no one I could talk to (leave a message - someone will call you back), passing me around from person to the next, etc.  I've left messages at some of these places before and never received responses.  I finally did talk to someone at Mary Bridge and the waiting list for physical/occupational therapy there is 3-4 months and speech is about a month and 1/2.  The speech wouldn't be too bad, but I'm waiting for other places to call me back so I know who has the shortest waiting list and I'll get him on those ones. 

I also called Sweedish Hospital to try to inquire about their Keto program and how long their waiting list and I got tossed around from one person to the next who knew nothing of what I was talking about even though it was on their website and I called the number listed.  After explaining myself several times over to different people and getting routed around I finally talked to someone who knew what the Keto program was.  Their waiting list is not as long as I thought it would be - they could  get us in as early as May 21st (I've heard it can be several months).  It also sounded like they had lots of openings further out so if we started later like July or August or something it sounded like it would not be an issue.  I was too annoyed to call Seattle Children's hospital to check on their waiting list so that will have to wait for another day. 

My frustrations also grew out of his seizure activity today and yesterday.  I mentioned in my last post that we had seen his seizures reduce since getting out of the hospital and I was starting to get my hopes up that maybe the meds were finally working.  Well, the seizures came back yesterday afternoon as we saw all of them again - Atonic (head drops), Myoclonics (jerking or spasms) and absence (stares).  Although we always see them every day and are used ot it now it hits you harder when you haven't seen them for a few days as you begin to get your hopes up that "maybe this is it" and then your hopes get crushed right before your eyes.  His seizures have continued into today and so we seem to be back into normal seizure mode.  I am wondering if that Depakote Bolis they gave him in the hospital through the IV is responsible for the reduction so I am very anxious for our EEG results tomorrow with Dr. Korol.  I don't know if it was that was a fluke or coincidence and I want to be sure it was that extra med that did it before I increase his meds anymore as we have enough side effects and I don't want anymore unless it is really going to help. 

And, he still has glue in his hair!  I know this sounds trivial, but I have not been able to get all the glue out of his hair from the EEG.  One of the Moms told me to try olive oil which I did last night and I thought I got it all, but today I noticed several spots where he still has glue.  It was so hard to get it out last night and he was so upset so I hate the thought of having to do more to him to get the rest of it out (it is painful for him for me to try to comb it out of his hair as it is stuck to his scalp).  ARGH.

Some days are better than others and I guess this is just not one of the good ones.  I just want to protect him from all of this.