Neuro Appt

Seaira saw her neurologist today! He increased the settings on her Vegal Nerve Stimulator and we are going to try to slowly decrease her Kepra (that is the one that make her wobbly) but just by a 1/2 of a ml at a time, with the hope of getting her off of it completely but it could take months!
Everything is looking good!!
Thanks,
Gail

OOPS~

I just want to clarify......I was in no way trying to put down the staff members in Seaira's class, it is not their fault in anyway that things happened the way they did, I was just stating that it really bothered Seaira to watch all of her old staff assistance's being with new or newer kids. It happened the way it did and there is nothing I can do to change it but it SUCKS none the less! And I feel really bad about stating that I thought the sub wasn't "all there" but when it comes to someone working with my child I want to feel like they can do the job, and with that one women I have doubts and weird feelings about her and I won't leave Seaira with anyone unless I feel 100% sure about them and their ability to care for her!
I love and care for all the permanent staff members in her class, I feel life they are family, and I know if they had the power to change things they would!!
I am an overly emotional person and I really should wait until I'm calm to type things so I can make sure they come out right! Sorry!

Having a bad day!

I have so much stuff going on I don't even know where to start! Warning-I'm overly emotional right now!
I guess I'll begin with the bathroom! As must of you know we were suppose to be able to use Seaira's DDD funding to have our bathroom modified so that it would be easier to bathe Seaira! For those of you who don't know, Seaira weighs 72 pounds and I'm not suppose to lift over 10 due to my bad back (I have Fibermyalgia) so we're going to get a shower made so that we could "roll" her in and then she would be at the right height for me to bathe her! Anyway, it was quite a fight just to get the approval for this but we got it. We had two contractors to chose from one came way closer to the amount we were allotted and the other was twice as much. So of course we pick the lesser of the two and now we find out he has a big issue with state from a payment on a different job and it didn't go in his favor so he has chose not to do any more jobs for the state which leaves us with no one else to chose from but the one that was twice as much, well I don't have an extra $6,000 lying around for that!
Then there is the issue with school! She still does not have a one on one aide yet! It is depressing me seeing all the people who use to work with her working with these newer children. Seaira is in 5th grade and has been there the longest out of all the kids there and we can't get anyone to work with her. It just hurts my feelings so much! I feel like nobody wants to work with her. Sitting in circle time with her today I caught her looking around at everyone and then she looked me with the saddest eyes, she sees it she understands that her favorite people now have other kiddos to work with. When I left her school I cried the whole way home! Why can't she have someone who already knows her? She's stuck with an a sub right now that I can't stand, the women means well but she doesn't seem to be "all there", Seaira has medical issues and I need someone who is "all there" so that I can feel like she is safe, but again this is just a sub so if and when they find someone permanent I get to continue going to school with her to train them to, I think the school should just add me to their payroll!
Oh back to the DDD funding, since I found out we couldn't do the bathroom I was checking into "adaptive clothing" which is something on the list that her funds can be used for, so I find this web site called mini-miracles and they have things that are made for kids with feeding tubes but they are really expensive so I ask the DDD worker about that he says that I have to pay for it first and then the reimburse me for it! Well if I had that kind of money I would order them myself! I can't afford to be with out $250.00 for any period of time right now! GRRRRRRRRRRRR
Oh did I mention one of our cats shit on the floor of my van this morning!
Ya life is great!!!!!!!!!!

A couple of cute pics!

Thank you Stacy for the cute pictures!!

At little slow on updates, sorry!

Seaira had an appointment at Shriners on Thursday to have her back rechecked
and the curve was 8% worse in just a 3 month period. We got her back brace fixed so it fits better and she has to go back in 4 months if there is no improvement than we have to schedule surgery(rods in her back)! :o(
I also talked to her neurologist today and we are adjusting meds yet again in hopes of controlling the seizures. He thinks that her recent growing spurt and her scoliosis getting worse could be causing the extra activity??
That's all I've got for now!
Thanks,
Gail

October is Rett Syndrome Awareness Month!

Ok October is soon approaching and it is national Rett Syndrome Awareness month!
I received the invites for the Phantom Tea Party. Here's how it works.....
You message me your address, I send you invite which contains a bag of tea, you drink it in Seaira's honor and if you want you can you send a donation in her name to The International Rett Syndrome Foundation! It's a great way to spread awareness and earn money for the wonderful foundation which was created for families like mine!
Thank you,
Gail and Seaira

Another day at school

Seaira went to school again today and she did alright with the exception of some gas pains. She stayed about an hour and a half and then we went home! I'm starting her off slow while she is on all these medications. She came home and slept for hours!
I made an appointment this Thursday for Seaira to be seen at Shriners. Her back is getting so bad that I don't want to wait until November for her to be seen!
Well that's all to report today, so far!

School

I took Seaira to school today, she didn't last too long but at least she went! She got to meet her new staff assistant, Daphni, she seems really nice! And she also got to see her Physicals therapists Julie and Sue, that made her really happy! I talked to her neuro's nurse today and she said to try decreasing one of her meds but just by a small amount so that maybe she won't be so tired so we will try that tonight!

One Good Week

Our friends Terrri and Abby got to come visit us from Missouri this last week and we had an amazing time! Seaira held up very well for our trip to the beach and the trip the Falls. She was able to wait until the night before they were leaving to have her seizures and I can't help be feel like she herself fought them off that long! She went without any seizures today but she is so drugged up that we don't get very much a wake time from her but when she does wake up she is full of smiles! She's been hooked up to the feeding pump the last todays but today I did get her to eat some jello and drink a couple bottles of liquid! Her neuroligist is on vaction so we have to wait until he gets back to figure out what our next move is!
Thanks for all the prayers and well wishes!!

Sept, 12, 2008

I wish I had some real news to report but all I can say is I've been spending the last two days watching my daughter sleep. She had 2 seizures yesterday and was never awake for more the 10 minutes at a time! This morning I waited until the last possible minute to give her medicine to her so I could enjoy a little bit of awake time but she still was pretty out of it!
Is this as good as it gets???????????

Seizures~

She just had 10 in a row, we gave her the emergency meds and praying they work! I'm also putting a call into to her neuro right now to see if there's anything else he wants me to do! I'll keep ya all posted!!!

We just got home from the hospital.
She had about 15-20 more while we were there, little ones, but still! They increased her emergency medication gave us another and sent us on our way! When Lisa got her out of the car to bring her in she wasn't breathing! It's going to be a long night!!!
Hey everyone! Thank you so much for all your love and support!

It's 1:30 right now and Seaira has not been awake for more than 5 minutes at a time today.
She has had at least 7 seizures today and I have given her the emergency meds! I'm really starting to loose it here, kinda feeling like this is going to be as good as it gets, like I'm just going to have a drugged up child from now on!
I just want my baby girl back, I want to see her smiles and hear her laughter!

Update

A couple of hours before her appt today she ended up having 8 more seizures.

Her neuro isn't quite sure what is going on and we've increased one of her meds and has given me another to use if the increase doesn't work!
That will be 4 medicines plus the vegal nerve stimulator. So she'll pretty much be a zombie for while! :o( No real answers no real solutions.

More seizures

I've been procrastinating all day about posting this because I know I'll probably cry but......... Last night Seaira had 13 seizures in a row (a cluster) we ended up having to give her diastat (her emergency medicine) at around midnight and that helped and she was able to sleep peacefully the rest of the night, wish I could have but at least she did! I called the advise nurse when this all started and she was really sweet and called me through out the night to make sure things were ok, she also made sure that Seaira's neurology office got a report first thing this morning about what happened and they called me. They are wanting to give her a form of Valium that should settle things down until we figure things out! Her neuro is out of town but flies back tomorrow and is going to see right after his flight comes in which I thought was really sweet! So tomorrow at 2:00.
She was suppose to start school but I'm going to have to keep her out until things settle down. She is going to end up with a brand new staff assistant and there is no way I want her to have to deal with seizures her first week at school.
Seaira slept until 10:00am and was awake for maybe an hour and went back to sleep and has been sleeping every sense!
I will keep you posted!
Thanks,
Gail