2011 New Year, New life to come

On New Years day we got to go visit Baby Eli.  He is Ryan and Ruthie's new son, and Margs loved going to their wedding.

He is a beautiful baby and just so sweet.

On Feb. 15, Margs will be 21.  Her last year of school.  Wondering what the future holds with this girl who can never be alone.  Who has a great service dog that just doen't get seizure work.  The investigation begins on what she can do doing the day.  She will live with us, for as long as we are able and can find great help, like the help God has blessed us with so far.  They maintain our sanity.  So many nights are interruped sleep, I'm not sure how Steve is able to work all day long. 

Last Friday, she had early out from school.  She and Mel were up taking a nap, and I heard the bark.  It was Emma.  I raced up the stairs, cause that's Emma's seizure bark.  Sure enough, big ol seizure, and Emma barked twice.  Monty just lies on the bed and wonders.  So, excitement, treats and love.  Emma gets it, cause she is so treat motivated.  Monty isn't, so he's not so excited.  I'm still hoping it will come. 

Pastor Mike's sermon last night centered on HOPE.  When we lose our hope, we lose everything.

Have a great 2011.

Miss Marino, Molly and Baby Parker visit

Margs was so happy to hold baby Parker.  He is such a beautiful baby, and oh that hair!  He fussed and talked and liked to be jiggled.  Then, when I laid him down he fell right to sleep.  When it was time for them to go, Kim picked him up for a photo shoot, and to let Margs hold him.  He stayed asleep.  There is nothing quite like a sleeping baby.




Miss Marino (Kim) was Margs one-on-one for a while in elementary school, then in the transition to middle school, and then at high school.  She also did respite care for us.  Molly is Kim's daughter.  Molly spent lots of time with Margs, and is actually 7 months younger.  Molly now lives in Phoenix, and has a little girl of her own, Kim.  Margs was so happy to see them all, and all I could see from her was love to these women.  The love of Christ.  No matter what decisions they had made in life, and Molly has made some decisions and done some things that many of us would never condone.  But Margs knows nothing of that, she just sees Molly.  Like Christ sees us.  It was a huge lesson for me.

Special Olympics 2010

A big day at Simpson College in Indianola, Iowa.  A beautiful day, nearly 80 out and breezy.  Margs and Monty went in the bus with her classmates, her teacher and aid, and her PEOPLE PE peers.  Margs helper at this time is Chelsie, she is wearing the red shirt.

Margs was so excited to see Katie, one of our semi retied helpers. who is an aid to an elementary student.









So, I'm not having luck getting the text where I want it, so just read the pics. 

Seizure this week, 4 am on Friday, Monty jumped off the bed and out of the room.  All I can think is he was going to get Emma.  Frustration.  After her seizure a week ago Friday, Paige's dog, Emmie, came in and did the full body sniff.  There is a scent, this confirmed it.  Our dogs just don't get it.

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.

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 http://www.idea-league.org/  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.

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.
http://www.4pawsfordanny.blogspot.com/

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.