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Wednesday, September 23, 2009

Ok, I warned everyone that October is approaching and it is Rett Syndrome Awareness month!
There are a couple things you can do that could benefit Seaira.
The International Rett Syndrome Foundation holds a fund raiser every October called Phantom Tea. Here's how it works..Message me privately your address and I send you an invitation. You drink a cup of Tea read a little info about Rett Syndrome and you have the option to mail in a donation on Seaira's behalf. Pretty Simple stuff! :o)

If you want to do something more person for Seaira you can always visit her Kiddie Pool and make a donation that would go towards some much needed equipment for her. Now that she has had her back surgery and stands almost a head taller she has out grown her stander and her car seat, it would be AWESOME to get some help towards these items!

Thank you all so much for the support you have shown Seaira and our family
Big Hugs~

Monday, September 14, 2009

Home and Healing~

I know it's pretty nasty looking, but I thought everyone should see what it's like!

Look at her sitting up so big!!

Trying to rest!

Tuesday, September 1, 2009

Surgery Update~

We had Seaira's pre-op yesterday at Shriners.
Her Surgery is September 8th at 7:30am at Shriners Hospital for Children
3101 SW Sam Jackson Park Rd, Portland, OR 97239 We will be checking September 7th at 6pm.
The surgery should take about 7 hours, so I will be hanging out in her room most of the day.One of my cousins is going to come hang out with me so I won't be alone. That Shel! From surgery she will go right over to Doernbecher's (excuse my spelling, that one always gets me) ICU where she will stay at least one night and as long as all goes well she will be moved back over to her room at Shriners. During her time in ICU, I will not have use of my cell phone or computer but once she is returned to Shriners I will be able to use both in the room but will probably have the ringer off on my phone so it won't disturb Seaira, so if I don't answer PLEASE leave a message and I will try and get back to you. If I understood things correctly we won't have a phone in the room to use, they made it sound like there was a payphone in the hall to use so I don't think people can call directly to the room, or maybe it's just that we can't call out on it, not sure though! Emailing me would be a great way to get a hold of me, you can do that Shipley_gaild@yahoo or And of course I will be checking Myspace and Facebook frequiently.
I was told that they will be putting one rod on each side of her spine with screws in the middle to "fuse" them together with goal of straightening it much more then it is now but it won't be perfectly straight. Her curve changed from 42 degrees from her last appt to 57 now, not good at all!
Lisa will be staying at the house to help out in any way I need, probably taking care of the boys more then anything, which makes me feel good, I hate that I won't be there when they come home from their first day of school.
Well I think that is about it for now!