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Old 08-26-2006, 11:04 PM #1
Busymommie Busymommie is offline
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Join Date: Aug 2006
Location: Winston-Salem, NC
Posts: 116
15 yr Member
Busymommie Busymommie is offline
Member
 
Join Date: Aug 2006
Location: Winston-Salem, NC
Posts: 116
15 yr Member
Default checking in and heading out; more left seizues and an question...

Riley and I are going to hit the road tomorrow to head down to Charlotte to see Dr. Parrott.

I have a million questions and hope he has blocked out a couple of hours for us ok, not quite a million but close.

Riley was laying in bed last night when we got home, I noticed a black looking spot on the bottom of her foot so I looked closer, the child had 6 pieves of glass in her foot. Where that black looking spot was it was unbelievably deep. I got the little ones out which were just below the surface, the last one was really really deep. Those pieces must have been in her foot at least a week, if not longer and she hasn't felt them. Britt broke a lamp about a week and a half ago, I assume thats where they came from. It breaks my heart to know that her CMT is progressing more along with every thing else.

Good news time too- her stroller/wheelchair should be here in about 2 weeks. We have been carrying her around when need be or using her old broken one for short trips. I am so thankful when stuff works out quickly. I can't say enough good stuff about the company we ordered from. They have been so ontop of things and have gotten Rileys equpiment to us so much quicker than the last vendor we went through.

More crummy news,

The seizures still are relentless although she had a 4 day period with no seizures they are still coming daily. I can't get past seeing Dr.Parrotts words stating the VNS hasn't been beneficial ...yet.

I think we need a med change...

I have a strange question though-
Over the last few days Riley has had more of those seizure that affect the left side of her body and since then she has complained about her ears hurting her, but it isn't like an ear infection it is more noise related. She will scream and hold her ears and say her ears hurt...

Any ideas? Coincidence with the seizures? Or is it related to them, Rileys have always affected her RIGHT side so all of the reading I hace done has been pretty specific to that. This is just weird.
__________________
Denae- Mom to
Riley (9)- Lennox Gastaut Syndrome & Charcot- Marie-Tooth
Brittany (11) a Prissy Princess
Sarah (14) Aspergers Syndrome
Victoria (16) Above Average Teenage sister
Jade (11) my niece, but now also my baby
Jacob (6) Possible Aspergers, but we have to sort through his anger/abandonment issues first
Jackson (4) The sweetest little guy you will ever meet.
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