Wednesday, March 31, 2010

A very silly picture

This is a pic Margs teacher took of her at school. Her aid, Bonnie, found these very cool and hip sunglasses and brought them to share. They have chains for the bows, and at the end of the chains are the dangling earrings. Can't you just see Goldie Hawn dancing in these on Laugh In?
Here is another Puple Day pic, Margs teacher on the left, Margs, and her one on one on the right.  All sporting those great Dravet Walk t shirts.

This morning she had 2 seizures, nasty GTC's.  Monty was in the kitchen, and the minute he heard her he jumped the stairs to her room.  I treated him and "Good Boy" ed him.  Emma of course rose to the occasion too once she heard him come up and be treated.  I was glad he reacted to so quickly to the sound.  Hopefully its coming.

Saturday, March 27, 2010

Purple Day

This is Mr. Boyle, he was Margs teacher the first 2 and 1/2 years at Valley.

Here is Grandpa K, Monty and Margs

Friday, March 26, was Purple Day to raise awareness for Epilepsy.  I had leftover shirts from the walk, and sent them to school for Margs' teacher, aid, former teacher, and another aid to wear.  I ordered bracelets from the IDEA League  for her to share with who she wanted.  Margs was very pumped up and so exciited, we put her hair in a pony tail with a purple ribbon and purple head band.  She went to school nicely and had a great time being honored by all of those that love her there.  She has been at Valley High School longer than any other student.  I think she has been there for 6 years, and most students are there only 3.  She gave her bracelets to the nurse, the administrative assisstant and the principals, alot of her friends and other people.  I'm sure she and her dog and aid were quite a site with their purple and her big smile.  Grandpa came over to help in the morning to help me get her to school.  She gave him a bracelet.  Her teacher has told me she took pictures, but we haven't seen them yet.  I cannot tell you what the IDEA League has meant to me for support after nearly 18 years of being alone in this journey of Dravet Syndrome.

The med increase of the Frisium has seemed to slow down the seizures, but has really messed with her sleeping.  We are still trying to determine just what is going on with naps and night time.  She is still having seizures, and Monty is still without a clue.  We will continue to work with him, he is a great dog.

Saturday, March 13, 2010

Med increase begins

After another 5:45 am seizure, I hesitatingly gave her the increased med dose in the am.  First day of spring break.  We have nothing going on, so she can sleep for a week.  Our Ashley came over to help today, and I went out with my friend Carol.  At 2, Ashley calls to report she's been seizing for 5 minutes.  I'm 20 minutes away.  I give her the options, but mostly, if her lips are pink and it appears her breathing is fine, not much to do except administer some oral ativan and wait it out. 

My friend drops me back at the car dealership, where I got my oil changed and tires rotated, and immediately call Ash to see if I need to buzz home.  Nope, she's done, she's sleeping.  Whew.  Monty did nothing, asked Ashley to treat him and "Good Boy."  She reported that Monty made more of an effort when they "all fall down" during ring around the rosy.  6 seizures now under the new plan, and my confidence that this will work is waning.

New class at 4 Paws this week, and one of the dogs alerted day two to a myclonic seizure.  My heart just dropped.  For us.  Glad for them, despair for us.

Friday, March 5, 2010

2 calls, same day

Tuesday afternoon, the day of the calls.  Dr. Laux does not think the increased med is causing the seizures, instead, she wants us to increase it again.  IF this causes more seizures right away, then we go back to med increases.  Are we beginning to understand the difficulty of a life with Dravet Syndrome?  Ah, but this week has been calmer.

Jeremy called, and we are going to try to train somewhat differently.  Thankfully he confirmed that seizure work should not be this hard.  Monty is still good, but I can see he is not sticking by his girl like a dog that is concerned should be, even though if he is in the room with her, and she gets up to leave, he will follow.

Wednesday night we went to Target.  Margaret successfully spent most of her gift cards, and we were questioned by the stocker in the dog treat aisle.  Told that dogs were not allowed in the store.  When I told him, that yes, this dog, in fact is allowed in the store, he became confrontational and asked me if he was a seeing eye dog.  Monty had his harness on, he is way too big to fit into a purse, so he is obviously a service dog.  I told the man he could not ask me what the dog was for, and that indeed, he is allowed in the store.  The man commenced to call his supervisor, as we strolled away.  I'm sure she set him straight.

Disability education still has a long way to go.

Monday, March 1, 2010

March 01, 2010

Still having more seizures than she used to, but made it through the weekend pretty well.  I am still waiting a call from Dr. Laux on what she thinks we should do.  If I don't hear by tonight, I will call tomorrow.

Still waiting on a call from Jeremy, but I'm sure they were busy last week making sure all the dogs being matched for the next class are ready.  I really don't know if he will have anything more to say to help.  Monty has really missed every seizure, with no excitement, and all the testing I do does not seem to transfer over to the real deal.  We will keep hoping and praying, because he is such a good dog and seems quite attached to Margs.