School

I am so peeved right now I can't even see straight! I just found out Seaira is not assigned a one on one staff assistant this year. I'm told it has something to do with some paper work not being turned in on time(not paperwork I am responsible either) , but I don't buy that for one minute!
This is such a load of crap! When Seaira first entered into Vancouver School District we had to fight for her staff assistant and here we are again 6 years later doing it again! She doesn't walk, she doesn't talk, she has seizures, she has a feeding tube, she can not do one single task on her own!
I can live with the cards I have been dealt really I can but why the hell does everything have to be such a damn fight??????
This will be a huge fight and I will sue their asses if I have to!
I will keep you all posted on how this all turns out!!

Damn Seizures!

Now that the surgery is done and her VNS has been turned back on and we think we can start decreasing the medication that is making her to sit up very well on her own....She starts having seizures again! Two right in a row! Sometimes it's just so hard to sit and watch and not be able to do a damn thing about it! My heart hurts so bad right now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Neuro Update!

Seaira had her appt today and her VNS got put back to the settings it use to be and we are slowly decreasing her Kepra and hopefully will be able to take her off of it. Her neuro will be seeing her once a month until everything is back to normal!

Doctors Appt.

Seaira went in on Monday and saw the surgeon to have her incision rechecked . They still say it looks just fine to them, I guess I need my eyes rechecked because I still think it looks horrible but I guess if the doctors aren't worried about it that I shouldn't be?????
She goes in on Friday to her the VNS programmed to the right settings!
She has been doing really well and seizure free!!

Little Miss Seaira LaNae Nae!

This is suppose to be healing fine, doesn't look like to me but what do I know??











Seaira has been doing really well except for the fact that I don't like the way her incision is healing, the doctors say it looks good to them??? I think she is going to have one ugly scar!
She goes back in on Monday to have it looked at again and she goes in on the 22nd to have her Vegal Nerve Stimulator turned on to the correct settings and I'm hoping at that time we will be able to at least cut back on the Kepra!! I'll keep you posted

Pictures of her boo boo

Ok here are the pics, of course she wouldn't smile for anything, but we take what we can get!
Today was the first day she could have a shower and that the bandage could come off and stay off! She is doing really well other then still wanting to claw at it! She's giving me quite the work out! Her f/u appointment is on the 18th. I'll find out Monday when her appointment with her neurologist will be to get the VNS settings set!
***Thank you Stacy for delicious dinner last and the visit, it was so good to see you, Seaira says thanks for the gummy's!"***

Little Miss Sunshine!

Hey everybody! Seaira has had an interesting day so far! She is still resting quite a bit but we did have to take a trip back up to Dorenbecher's today. I had caught Seaira scratching at her incision so I take a look at it and I could tell it had been bleeding more so I called the advice nurse and she had me take off the bandage and that it was when I noticed the stitches were coming out. So we went up and they put some steri-strips over it and covered it back up! I'm still having one heck of a time keeping her hands off the incision but I'm doing the best I can!
I'll try and get some picture with in the next couple of days, when she's more awake and alert!
Right now she's on a pretty strong dose of antibiotics to help prevent any infections and is taking Oxycodone for the pain. She's not eating regular meals yet but she is hooked up to her feeding pump and is drinking plenty of fluids! She has to wait 4 days to have a shower which is nasty considering they got iodine in her hair! After that she can have showers but no baths or swimming for 14 days! Her device got turned on to a low basic setting until she goes to see her neurologist!
I think that is about all for now!
Thanks everybody!

Seaira's home!

We finally got home around 8:00pm tonight! She is sleeping soundly at the moment!
Thank you all so much for you prayers, love and support!!

Hugs~Gail

Surgery Update

Because of a family emergency of the surgeons Seaira didn't go in until 3:30pm, I'll let you know how things go just as soon as I can!!
Thanks,
Gail

Change in time for surgery!

Seaira's surgery is now scheduled for 9:00am instead of 7:00am!
I'll post as soon as I can afterwards!
Thanks!

Things are still good!

Just a quick not to let everyone know that things are still going smooth! Surgery is Monday at 7:00am up at Dorenbecher's, remember I won't know until they've started the surgery if she will be staying the night or going home. We're hoping for the best preparing for the worse! I will make sure to post ASAP to let everyone know what is going on! The surgery will anywhere from 1 to 5 hours depending on whether or not they have to change out the wires in her neck!!