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!