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Tuesday, January 27, 2009

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.........

Friday, January 23, 2009

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!

Monday, January 19, 2009

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!

Friday, January 16, 2009

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!

Thursday, January 15, 2009

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!

Monday, January 5, 2009

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!