January 29th 2012

Seaira had her 24 hour esophageal ph studay done on January 26th. This was done to find out if her acid reflux has got worse over the years. If indeed it has then she will have to have her Nissen redone. That is where they make the hole from the esophagus to the stomach smaller so that nothing comes up. She had this done when she was 3, so it is possible that it is time for it to be redone.
Seaira did very well during this test, the initial putting the tube up her nose was not very fun, but after that she did amazing!
The last few days her seizures have been under control and I pray it stays that way!
I hope everyone has a wonderful week!

Too much time has gone by AGAIN!!! :o(

I have a goal this year, please help hold me to it! I want to post on here at least once a week! Right now there is a lot of little things going on with Seaira. She is going to have Esophageal pH study done to determine how much reflux she is having. We are thinking that her Nissin, that was done when she was 3, may need redone. For those of you who may not understand what that is feel free to ask and I will go into to more detail about what exactly a Nissin is. Her back seems be doing well and she is pretty straight with the rods in her back. She has a check up at Shriners at the beginning of February, if there is anything new to update I will do so then. She still is unable to sit up on her own.
She broke her Femur at the end of the last school year, in which I will never forgive myself for. She was in bed sleeping and the doors hadn't been closed, in my defense; I wasn't the one that had put her in it. But I was the one in the room with her. The mail had come and I walked outside to get it and on my way back in I heard her scream. :o( she landed with both legs underneath her. The left femur was broke and there was some muscle damage to the right! She is doing so much better now. The leg will never be perfectly straight but since she doesn't walk and has to be in a wheelchair for transporting and other activities, the leg had to be left with a slight bend in it as it healed.
She is still battling seizures, and I don't know that she will ever have complete relief from them.
We were very lucky to have Lisa's hours increased for the month of January. It was due to some law suit against the state of Washington. But February it goes back to normal, well she does get a 3 hour a month increase. We'll take what we can get! :o)
She hasn't been going to school due to her seizures and medicine changes!
I hope everyone is doing well!

Some of Seaira's Newest Pictures!

:o)

Hi Everybody! Again I have let too much time go by! Things right now are actually looking good with Seaira!
She is going to school 4 days a week and staying an hour longer for the most part, she still has some bad days but overall so much better then last year!
We now have Lisa as her care giver. She comes over everyday before school and gets her ready, yes all the cute hair-dos are from Lisa! :o) She also comes over two week days and ALL day Sunday. Seaira is really enjoying all the extra time with sissy and my back enjoys the break! :o)
Seaira's back is doing so much better since her surgery, she is even attempting to sit up on her own again!
Her Birthday is creeping up on us, she will be 13 this April. We are planning her party for April 23rd, so mark your calendars!
We are planning a trip soon too. Lisa, Seaira and I are going to go visit our friends Terri and Abby at the end of March. They live in Kansas City, MO, so it will be a long a plane ride, but I am really looking forward to it!
I think that is about all to report for now! Hope you all are doing well!

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!

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!