A Couple Updates

Just a quick update on a few things.

1) Our 2nd appt. with the neuro psychologist was supposed to be yesterday morning, but it was cancelled by the Dr. because he got sick.  We will now try to see if we can get him in next week to finish the testing.

2) Our appt. with the Dietician has been scheduled for May 1st.  We should be able to start MAD very shortly after that appt. so it will be very soon. 

3) So far things are going well on Zaranotin.  We have not seen any side effects yet, but then again it's only been a few days.  He does not like the taste of it, but takes it without putting up too much of a fight (luckily it is only a small dose right now). 

4) Joshua is now on the waiting list for Physical Therpay and Occupational Therapy at Children at Play in Sumner.  There are about 5 kids in front of him on the waiting list so hopefully it won't be too long, but we'll see.  I am also going to put him on the waiting list at Good Sam Children's Therapy Unit (CTU) just to see if they call first, but I doubt it as they said it was about a 4 month waiting list.  I am going to have him take speech at Mary Bridge as they had the shortest waiting list for speech at 1.5 months and the place in Sumner does not provide speech therapy.  I was hoping to get him into the therapies for the summer while he is not in school, but we will see.

5) Seizure activity still remains about the same.  We see daily absence (stares), Myoclonic (jerks and spasms) and Atonic (head drops).  I continue to track them, but there doesn't seem to be a real pattern to them.  He had a really big cluster of Myoclonic seizures last night when he went to bed that I thought was never going to end, but it finally did.  It is hard to hold him and watch him having that many seizures (34) and know that there is nothing I can do about it.  The persistent of the seizures in Doose kids is amazing and I can't wrap my head around the fact that he is on 3 anti-seizure meds and he still has so many seizures every day.  I am really hoping MAD will work as I read some pretty bleak statistics last night of the chances of medications working after the first 3 have failed. 

On a side note, Cole had 3 teeth pulled on Thursday by the Dentist and he is now doing well so glad that is done and over with.  And, our dryer broke so we bought a new washer/dryer and when they tried to install it today the faulty valve broke off.  We currently have a plumber at our house trying to fix - wonder how much this is going to set me back???