It's been way too long!

I'm so sorry I haven't posted anything in so long! Seaira's back surgery really through me for a loop. It was harder then I ever dreamed it would be. She is still recovering from it, doing much better but each day carries it's own struggles. Seizures are still an issue and she was recently hospitalized for about a week because of it. "One day at a time sweet Jesus" is pretty much all I can say!!
I will try and do a better job at keeping up on this!
Seaira is going to be 12 at the end of the month for those of you who didn't get the info about her party and want to be included please let me know!!

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)
http://www.rettsyndrome.org/

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!
http://www.adaptivemall.com/seairah.html

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

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!

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 Jasminsback4more@yahoo.com. 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!

Seaira's back surgery

Well the day is approaching sooner then I may be ready for but it is time. Seaira's back surgery is going to be September 8th at Shriners hospital in Portland. She will actually check in the night before at 6:00pm. We will be there a minimum of 6 days. Her pre-0p is August 31st at 1:30, I find out more details at that time. If anyone is wanting to come up and visit I will make sure I post the address along with the updates on the 31st.

Seaira's new bed!

Seaira got a new bed built for recently. My cousins husband designed and built it and it is awesome!
He put heart and soul into it. He went around telling people about Seaira and Rett Syndrome and got several donations along with making a very generous one himself.
So here a shout out to my cousin Shelby and her husband Rod, thank you both so much for being so thoughtful and caring, we love you both very much!!





If you are interested in one like this or need any other wood work done, here is the info.
The Woodtics Corporation
22645 S Stormer Rd.
Estacada, OR 97023
503-880-7945 fax 1 866-440-6739
Rod Blake
http://www.woodtics.com

Updates-Sorry it's been so long-

Seaira swinging at Fort Nugent Park in Oak Harbor, she really enjoyed this!

So many things to talk about! Most important..Seaira is doing very well right now. She is averaging about one seizure a day, they aren't real big ones. We have adjusted meds to try and fix this but it's just not helping. Her health has been good, her mood has been good, I can't ask for much more then that!
Seaira, my niece LaRae and I took a trip to Oak Harbor to house sit for my mom, we were there for 5 days and had a great time. We went to the beach a couple of times, took a boat ride around Deception Pass, and went to the park. Seaira seemed to really enjoy herself other then the boat ride, I'm not exactly sure what her thoughts were on that but she didn't look to thrilled about.
I don't think she ever looked up! :o(
Seaira made it to a few of her summer therapy sessions which was much better then last year she seemed to really enjoy her time with Sue and Laurie!
She seems to be staying cool enough in this insane heat we are having. We have A/C in one room and we try and stay in it!
Seaira's back surgery has been scheduled for Sept 8th up at Shriners, she will be in the hospital a minimum of 6 days and then bed rest for 6 weeks. I'm not worried about our time in hospital as much as I am when we get home, it will interesting to see how it all will work out, I may need some help from our friends and family during this time!
I think that is about it for now!