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!