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!

Seaira 11th Birthday~

We had a great turn out for Seaira's Party! I want to thank everyone who came to help us celebrate! Seaira had a rough time making it through her party though. The night before she had been throwing up and had a bad seizure then the morning of she had another one. We couldn't take her in the pool in fear she might have another one. :o(
It was wonderful to be surrounded by family friends though!
Seaira has been sick every sence her party but she is starting to feel a little better.

Seaira's OBG appointment

Last week I went to talk to Dr. Lee about Seaira's uncontrollable periods. After carefully weighing out each of my options I have decided to go ahead and try the depo provera. Not my first choice but right now I just don't have too many options! I just pray it helps!!

The Tobii~

Seaira had a lot of fun trying out the Tobii! It cost an arm and a leg,but who knows, maybe someday we'll get it!!

Easter

Seaira had a very good Easter! We went to my in-laws for lunch and then came back home and hunted for eggs, had snacks and played games my sister and her gang! Lisa came over for about an hour or so and hung out with us!

The Van!!!!!!!!

Ok, sorry for the delay in writing! We got the van and the end of February when we got our taxes back which also made it to where we could get back on our feet again financially which was a great feeling!
The van has a few little things that bother me about it but over all it is pretty nice!
Here are some pics!.................

Pretty Cool Stuff!

Here is Seaira's new Tomato Seating System! I love it!!!

Seizure Day!

Seaira woke up having a seizure things were calm for a while and this evening they started back up and haven't stopped! I've had to give her emergency medicine. She having little ones but they are one after the another!
Her brand new feeding pump I was bragging about decided to go out today of all days, for some reason the battery isn't charging, we tried moving it to different outlets and everything but it's not working so I called Apria and they can't get here until Midnight, I guess it's better then tomorrow!

Here is the van we are getting!


Here is the fancy new feeding pump that is not feeling so fancy at the moment!

Not a lot to report!

Things have been all right. Seaira did have another period on her 2nd week of her new pills which brought on another round of seizures. I'm not sure if I should call her OB, or if I should just wait it out and see what happens since things sometimes take time to work??
Seaira's feeding pump went out over the weekend and we got a new one delivered yesterday, it's called a Joey, wow, where has this thing been all the life, it is much nicer then what we have been using for the last 6 years! I'll try and remember to get some pictures of it later so you all can see!
A couple of weekends ago we (Jeff, Lisa, her brother and I) rearranged mine and Seaira's room!
The goal was to get her back in her bed but still have her close enough to me that I could see her while lying in my bed and be able to get to her quickly! I think we accomplished that!
Here are all the pics!








These are at the end of her bed and she is using them, it's really nice for her to tell us when she needs something!!

OBG Appt

First I just want to take a quick second to thank everyone who checks up on Seaira. I read all the comments and I wish I knew how to "reply" back to say Thank You to each of you!

Seaira saw Dr Lee up to OHSU today, he is not only a pediatric specialist but a Fertility specialist as well and we got a lot of funny looks sitting out in the lobby because is just says Fertility Clinic, but anyway. Dr Lee was wonderful! He discussed every option possible on how to best handle her period. My main concern was the increase in seizures that her cycle was bringing on and the how heavy the flow was.
I was very curious about a hysterectomy because I was hoping to just go in a take care of it all and never have to worry about it again, but Dr Lee said that would only stop the bleeding and that isn't what is causing the increase in seizures it's the hormones! Also it is actually against the law to perform a hysterectomy on a person whom can't decide for themselves but in a situation like Seaira's a court order can be given and it can happen and he said that she ends up having major bleeding issue in the future that he would be happy to address it then!
So we decided to put her on Nor-DQ, it seems to be the best choice for her and is safe for to take for a long period of time!

Well lets see....

Hey everyone, nothing major to post. Seaira has had a little cold which brought on more seizures, pretty normal for this to happen and the seizures weren't too bad.

She has her appointment up at OHSU with the OBGYN today, wish me look on this! not exactly sure what we are going to be able to do for her but I hope it's something!

I talked to her school and her doctor and have decided I am going to do what they call "Home Tutor" for her. She will still be enrolled in the school district but due to her health issues doesn't have to go to school. I think the school is actually suppose to send a tutor out but I am trying to make it so that I can just keep in touch with her teacher about things but I do want to find a way to continue her Physical Therapy so we'll see how that goes! This my solution for the school not wanting to hire a staff assistant for her, I just don't have the energy to fight this battle right now and they are right her attendance is an issue!

Well the first day my mom put her house up for sale it sold. She went to Oak Harbor this last weekend and found a house and will purchasing it! She's leaving on the 13th of February. I'm not ready for this. I've always been very close with my mom. :o(
I'm not sure what exact date Lisa is leaving but she said in February. I had to laugh the other day, Damien and Cody were talking and they had everything planned out about who was moving into Lisa's room. I had to burst their little bubble because it is neither of them. I hate trying to plan what is going to happen with her room because I don't want her to go BUT when it does happen her room is going to become Jeff's room and I have to say I'm a little bit excited about that!
Well I think that is it for now.........

Latest updates and BS....

I don't know where to begin! I'm kind of losing my mind right now and I'm overly emotional so please bare with me! The very first thing is Lisa, my 20 year old, is getting ready to venture out on her own next month and is moving out! This is wonderful for her, it's a positive growing experience for her and I am so happy for her and proud of her BUT I can't help but be very devastated at the same time because my daily life is going to change in a way I'm not ready for! Caring for Seaira is a very big job that I can't do on my own and Lisa has a very big part helping with this. I keep trying to remind myself that I did it by myself before she came here but that was 5 years ago and Seaira is about 30 pounds heavier now! I'm not suppose to lift more then 10 pounds and Seaira is 75 pounds! Anytime I've thrown my back out, had surgeries, or have been sick, Lisa has been right there taking care of me and everything else! She has spoiled me! I'm now dreading the day that I get a bad cold and need to rest, if I ask my husband for something as simple as a glass of water I get glared at and treated like crap!
On top of Lisa leaving my mother is also moving away next month, she's going to Oak Harbor Washington which is 5 hours away! I have no idea what I will do if I have a emergency in the middle of the night! I have no one with a car that I can call to come be with kids if I have to take Seaira in. I feel like someone has just dropped a ton of bricks on my head!
Next is Seaira's school, I don't know if you recall all the problems I was having with her getting a one on one staff assistant, well it never happened and it continues to be a fight! The school district is now saying that there is a enough staff in her class to take care of her needs without them needing to hire someone which is such BS. They are saying she can have several different people assigned to her through out her day instead of just one! I do not have the strength to fight this battle any more and I'm seriously considering pulling her out of school! I can't take this anymore! They promised me a one on one and they promised me it was going on her IEP and none of it has happened!
Next is Seaira's surgery, it is looking like it might be as long as a year, that is how backed up the surgeon is BUT we could get a call anytime if there is a cancellation. I was told that not many people can come in on short notice because of the length of time the child has to be in the hospital and recovery time, most families have to plan ahead for this kind of thing, but I'm a stay home mom and Jeff can call off from work easily for us this kind of thing! I'll be scared to see what my house might look like after me being in the hospital a week with Seaira but that is my only concern! Anywho, they typically have some cancellations during the winter so I am hopeful that we might be able to get this done and over with sooner then later!
Thanks for listening!

Boo Hoo

Anytime things start looking up the damn seizures creep up! They started last night and I woke up to them this morning! She has been sleeping ALL DAY! :o(
It's going to be a long night!!!!!!!!
Please keep my baby girl your prayers! Thank you everybody!

A good day at school!

Seaira went back to school for the first time in a while and she had such a good! She was getting tired toward the end but she managed to not fall asleep! I brought her home and she slept from 12:30 until 6:30, I think I'm going to be up all night!

Seaira had her check up this morning at Shriners and it didn’t go so well! Surgery is the next step! He’s booked 2 to 3 months out but if there are any cancellations Seaira will be called in since we live so close! I’m trying to be strong here but I did watch one of these surgeries go wrong and I can’t seem to get that out of my mind!
She’ll be in the hospital for 1 week and bed ridden for 3 to 4 weeks after that!
I’ll let you know the exact date when I find out!
Thanks

Everythings fine!

This what I did with her MP3 player so that she could watch the videos with out it falling all over the place, I got the box on an after Christmas clearance rack for $4.00, good find!
Seaira's beautiful angel from Stacy!
With this switch Seaira can turn off and on her Monkey and her CD Player!
Seaira with her monkey that places music, she was jamming out!

Here's Seaira with her cute elephant ear phones!


Things have been going fairly well this last couple of weeks, not perfect by any means but doable! I'm hoping to take her back to school in the morning but it's already almost 1am and she is wide awake so we'll see!