Seizure or Behavior

Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past month I have been noticing them more frequently. I assumed it was her quirky way and just part of a special needs personality. I think we all know what I mean when I say some people with special needs sometimes have quirky arm movements like tics. I started to get worried a few weeks ago when one night they happened at the rate of 1 each minute lasting for over 25 minutes. She would even hand me her cup of milk to do this hand arm mouth clinch movement and then get her milk back from me when it was over. I called the neurologist the next morning and she got us in as quickly as possible (2 weeks away). Ironically, Sadie also had an appointment with a pediatrician in her doctor's group for a penny size skin rash that next day. Dr. B was lucky enough to witness one of her movements and said it looked like a partial seizure.

This leads me to the appointment with Dr. F (the neurologist) yesterday at the hospital's EEG lab. After describing to the doctor these movements and also showing him a very short video of one off my blackberry. He concluded that he just couldn't say for sure. That she does have ataxia (drunken walk) and tremors (she is shaky) and she may just be having behavioral stems. When he described a behavior stem and I asked him if it was similar to us stretching or yawning or getting the shivers. He said yes. He said she might be doing it because it feels good and that we should try to remove her from the environment (if she is sitting then we should lay down) and that might make her comfortable and she won't do the behavior. He proceeded to say that partial seizures come in clusters and he asked if I see more than one at a time. A cluster is anything more than one. I couldn't conclusively say that they always come in clusters, but I do know they are more frequent when she is tired. Sooooo, Dr. F determined that he couldn't rule out behavior OR partial seizure, but one way to find out was to have another EEG, yay!!! not! Dr. F's nurse called when we got home to let me know that the doctor didn't want another routine EEG (she's had 2 already) that he wants a 4 hour video monitor EEG. Yes folks, I did say 4 hour not full hour.

So on September 3 we will be arriving at the hospital at 7:30 am after sleep depriving Sadie (putting her to bed at midnight and getting her up at 6am). She will have her little head mapped out with a red wax pencil and then gooey stuff put on each of the "right" spots and 26 wires smashed in the gooey stuff on her head all the while she is wrapped in a papoose/blanket burrito so she can't move. All of which takes 20minutes. Then we will be put in a small room large enough to hold on twin bed and one recliner chair and asked to hold her and play all in the hopes that she also falls to sleep so they can read her brain during wake and sleep. Oh and her little head will be all wrapped up in gauze and she will look like she just had brain surgery all except for the 26 wire pony tail that will come out the the back of her head and be attached to an EEG monitor for the whole 4 hours. The nurse did say that the 4 hour is a minimum and that if they saw "stuff" going on that she could be hooked up longer.

Many thanks to Nanny, she will be watching Shelbi Wednesday night and most of the day Thursday.

Yay!!!

Speech eval

Sadie had an AWESOME person do her speech evaluation today! I'm so excited to work with her and Sadie!!!!
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Beach Days

sweetie would say

When I was growing up, there was the most amazing and wise man who lived across the street. I grew up in the country, so across the street was a 10 minute walk across 5 acres. When we were older we called him Sweetie, but as a kid he was Mr. Snyder. To my mom, he was James. This wonderful man knew many things, and he lived a great life with sadness and of course love and happiness too. He was a rock of support and words of advice. He was never judgemental and he always had a kind word to say. We spent lots of time with he and his wife growing up. He always smiled and never had a harsh word. You knew he would support anyone not matter their mistake because he knew we all make mistakes. That was the kind of man he was. I've been thinking a lot about him today because of the humble life he lead, the smiles that he shared and the wise words he passed on to my mother that she passes on to me. She might say in a time that I need comfort, "Sweetie always said a little bit at a time, baby, a little bit at a time." Many times in my life, I have come back to the words of wisdom that he passed on to me. The words that made life seem simpler. I think about the compassion he showed other people because he knew he didn't live in a glass house. People are cruel. People are compassionate. It amazes me. Sadie has opened my eyes that people have flaws and people are human no matter their genetic defects, tics, physical deformities,0 why do people have to be so cruel to people that just can't help the way they are. Oh ignorance is bliss. Life is life even if it isn't perfect.

Thankful

Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find any other families who write about their children. I know I do this when I'm feeling on the blue side. It always helps me to read about similar situations and find some comfort in other stories. The compassion that one mother has for another mother who also has a disabled child is an unbreakable bond.
Mostly my mood was prompted because my husband watched a 20/20 segment about a girl with Autism who they thought was severely disabled and unable to communicate. On day at the age of 11 she spontaneously started typing on the family laptop. The family had no idea their daughter had so much to say and she really was able to tell about her disorder in her own words. I'll post a link to her site soon.
So like I occasionally do, I googled chromosome disorder blogspot and family stories. I scrolled down the list and clicked on Noah's story. http://noahgrantjohn.blogspot.com/
I feel so touched and moved to have read part of Noah's story. He was born September 2005, the same year as Sadie. The first picture on his site was a picture of where he was buried last week. He wasn't yet 4, but he shares a common bond with Sadie...they were both born with RARE Chromosome Disorders. I feel so thankful that Sadie is here on this Earth and with us. Tonight I grieve for little Noah and his family. May they somehow find peace and comfort. My heart goes out to them.
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speech

We are having a new speech evaluation next week at a new therapy office...

Pretty Girl

This in one of Shelbi's princess dresses from her birthday! So Pretty!
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