I was really looking forward to today.

The day after Thanksgiving. It is just Jen and I home for the day. I was going to accomplish all the things I have had to put off in the past couple weeks in the house. I thought I was going to just have a good day in the house. I was looking forward to it.
Well, once again Jen had other plans beginning with last night. She went to bed late, then was awake for most of the night between her seizures and stomach, there was no sleep for us. So I stayed up with her watching High School Musical for the 3000th time in the past year! It is noon time now, I am exhausted, she still hasn't fallen asleep and doesn't want to spend a minute alone, which is so unlike her. She has been downstairs a few times, and although not happy today is happier in her room upstairs. So three lifts up the stairs is enough for me today. Her lunch is cooking, and then maybe , just maybe we can both get some needed rest.
So much for my put off projects, they will be waiting for me when I can do it. But not today.
These sleepless nights are way to frequent, for her and me, and the rest of the family, as she is not quiet in the middle of the night to say the least.

Thanksgiving Day

Happy Thanksgiving.

I am so thankful to have the family and friends we have. Thankful to have three beautiful daughters, all with their own personalities shining through daily, and a husband that is always by my side. Our family life has changed dramatically these past few years, but we have learned to make the best of each situation. Positive thinking does wonders for each new arriving day.

May we all be healthy, happy and remember to laugh each day.

Happy Thanksgiving.

What do other peoples calendars look like?

I am sitting here with a little bit of time, filling in my calendar, or should I say calendars?

I have my Palm and wall calendars which have my schedule, the kids schedules, appointments etc. They pretty much duplicate each other, one is in with me all the time. Then I have Jen's calendar - all appointments, seizure activity, med changes, toileting issues, you name it , it is there. This is the one that is so time consuming, I pull it out all the time, as I am constantly adding something.

How one week makes a difference

12 days ago we thought we were on a new path. Finally after a month of no seizure free days, Jen had a good weekend and three days of no seizures. We had just switched from a generic to name brand seizure medicine, and I thought that was the solution. I was so wrong. Last Wednesday she had 19 seizures between school and home. None were long enough or clustered together enough to use the emergency medicine. Most were tonic/clonic (gran mals) and they are so so scary to watch.
Then the next day she had many more on the bus and at school, well time for the emergency meds and the EMT's and the Emergency room once again. The doctors have now increased one of her medicines. She stayed home with me Friday and was completely wiped out. Usually she bounces back quicker. She just wanted to sleep and relax.
At least this gave me time to make the many calls needed to get better emergency plans in place for the bus and school, for when we are not with her. The bus company asked if I thought it was time for a nurse on the bus. We have been thinking this for awhile now, and this in my new pursuit, we will talk to the doctors and school dept.. So since last Friday, she has had a few seizures a day, back to quick jumps mostly. So we put last week in the back of our heads, moving on to each day hoping she has a good one that doesn't create havoc in her life or ours.

No braces, no seizures - a good day !!

Jen needed to have lab work done this morning, which meant not taking the bus to school. She was so funny getting her labs done, she actually laughed at the lady the entire time. I on the other hand was not laughing. The lady was obviously freaked out by Jen being young and in a wheelchair. At least Jen found her amusing.
We then drove to school and again she was giggling away, knowing she was in her stroller for school and that meant no TLSO brace or AFO's for the day. BRACE FREE - I love the days she doesn't wear her braces. She seems so much more relaxed and always in a better mood. They don't hurt her, but I can't imagine having so much formed plastic clung to my entire body all day long. Of course the doctors say she needs to wear them as much as possible, so she does, but some days its nice to see her free from all the structure in her life!!
One more added bonus today, no seizures!!
Jen has had three days of appointments in the past 7 days. Enough for a bit anyway!!

Jen spends the day with her Mom

Today is Friday, Jen stayed with me today.

We went for her flu shot, came home and had a real good day, we watched High School Musical 2 and then the Muppets together. Anything musical makes Jen happy - even my singing, She loves the attention even if the voice is horrific!
I spent time on the phone scheduling an Endocrinology appointment. This is a new department for her. She is slowly losing weight and we can't figure it out, so the doctors said this would be a good place to start. Of course it is Mid-November and the first appointment we can get is mid-February. Can't see this is good, hopefully we can figure out a solution long before February. She can't afford to lose anymore.
Unfortunately Jen wasn't feeling great later this afternoon, so we held off on Lab work and will go on Monday morning. I will drive her to school afterwards. She was out this past Monday for Neurology appoinment and then today, so she has to get back to school Monday.
Maybe the weekend will be comfortable for her with few seizures.