Update on Jaden

Many of you have asked how Jaden has been doing since the surgery. I guess it's time to give everyone an update. As far as the physical aspect of the surgery, she has done great. She did great. Well, as far as the seizures go she hasn't done so good. She had 3 seizures in the month of August which was okay because they said she could have seizures for the first month. Then she had 7 seizures in September. I called her neurologist at the end of September to let him know that she had 7 that month. A nurse called me back to tell me that she spoke with the Dr. and he said that he wasn't concerned about her having 7 that second month. He said to tell me that sometimes some patients take a little longer for the brain to settle down. Well, by the 3rd week in October She was having anywhere from 4-6 seizures a night. So I called again and left an updated message. This time I got a call back from the Dr. He told me that was not what he wanted to hear and that Jaden has just become a very difficult patient. He said the surgeons like to be conservative and in some cases unfortunately they don't remove enough of the brain. So he tripled one of her medications and told me that when we meet in December we would discuss our next possibilities one of which will be a 2nd brain surgery. He then told me to keep him updated on how she is doing. Well, since I talked with him and we tripled her med. she has increased to 6-8 seizures a night. She ended up with a total of 105 seizures in the month of October. I am getting ready to call him again to let him know that it has only increased since we last talked. This is coinciding perfectly with how her cycle runs. No matter how much they increase her meds her seizures will continue to increase until it gets so out of control that she is hospitalized. We'll see how this cycle ends up, but so far it's only getting worse not better.

BrAin SuRgerY!!

So what is it like to have your child go through brain surgery? Well, here ya go.....

Friday morning July 22, 2011 6:00 a.m.

This was during the prep stages. We are waiting for the surgeon to come in our room to talk to us before they take her back.

The surgeon came in and asked us if we had any questions before they took her back.  Ron and I didn't have any so he asked Jaden if she had any....she said, "yes, can I have the bad piece of my brain that you cut out?" The Surgeon laughed and said, "Wow, that is the first time I have been asked that. How about I bring you a picture of your brain instead. I bet no other kids at school have a picture of their brain."

After 6 1/2 hours of surgery and us waiting in the surgical waiting room for about 8 hours we were brought into the ICU.  This is what she looked like when we walked in the room. She was still under sedation.

When I walked to the side of the bed and saw this.....that's when I cried.

The incision went from ear to ear over her head like a headband. They do a zig zag incision so that her hair will cover the scar.  A straight incision will create a forced part that you can't cover up.

The tube above the incision is a drain tube. 

My Mom there to support us.

and Dona and Aunt Wendy

This was a few hours later when she woke up. You can see her drain tube going across her forehead. It was kinda creepy.

This collected the fluid draining off her brain.

Travis came with us to Salt Lake and stayed in the hotel with us the night before.  It was really good for him to be there and be apart of it.

And this is the picture the Surgeon promised to bring her. You are looking at her face from a top view.  The piece of bone that is cut out is from her forehead and on up to the top of her head. The Doctor said they removed the bone right above her eyebrows.  So under the gauze would be about where her eyes are. The piece of brain they took out we were told was about the size of a "thick slice of ham." When they were done they replace the piece of bone and stitch it and then put her skin back in place and stitch that all up.

Lots of Tests in Preperation for Brain Surgery

In preparation for Jaden's brain surgery she had to have a few tests done first.
1) the EEG with video monitoring (that was done while she was in the hospital for 6 days.)
2) an MEG which is what these pictures are from.
3) a psychological evaluation that was an 8 hour test.

getting ready...having all of the cords glued to her head

Once they were glued on then they placed a cap on top of them.

And next they took her in a room that was free of all metal. The door sealed shut like a bank vault. Ron and I took turns sitting inside with her. This test lasted 4 hours. She laid down in a machine that looked like a cat scan. Then on the outside of the room doctors watched her brain activity along with her seizure activity. She had about 8 seizures during the test. She had to be sleep deprived when we brought her in. She was only aloud 3 hours sleep from the night before. This way she slept while she was in the test. It worked out perfect for her, but Ron and I were exhausted. 

Lake Powell Trip

4th of July BBQ

Jaden's Baptism

We decided to do Jaden's baptism the 4th of July weekend. We knew we were going to do it sometime this summer while we were in Utah, we just hadn't decided when. Well, on the 4th everyone was in Mt. Pleasant except for Dad. Ron decided he wanted to do it then. His parents were good sports and without notice drove up to Mt. Pleasant so they could be there too. I didn't want to rush it because I was stuck in Mt. Pleasant and hadn't bought her a baptism dress yet. About a year ago she was so excited to pick out a white dress. I told her when it got closer to her baptism she could. I tried to explain to Ron that it would be sad if she didn't get to shop for a baptism dress. For whatever reason he really wanted to do it Saturday. (This was Friday night that he decided this.) Well, I found in a closet at Mom's house Kim's baptism dress. We had Jaden try it on and she loved it. The coolest part about that is that I made Kim's dress for her. So I told Jaden that it was a special dress that I made for Aunt Kim and now she gets to wear it. She was so excited that I had made the dress. I was so amazed at how wonderful everything turned out. Better than I ever expected it to. The spirit was so strong and everything came together perfectly.

So the beard......I was NOT happy about this. Ron didn't have his razor the week that we were in the hospital. So when she got out he decided that until he went back to Ketchikan he wasn't going to shave. I begged and pleaded for him to shave before he baptized Jaden, but he wouldn't give in. Less than a week later he was back in Ketchikan and had to shave....ugh!!! lol 

Travis spoke on baptism. He did a GREAT job! I was really proud of him.

Jayley and Travis weren't there in time for the family picture that we took with Jaden so we snagged some when they arrived.

Grandma Lane, Grandma Taylor and Grandpa Taylor

Jaden and her cousins. She LOVES her cousins. Jaden, Averi, and Emyly

I snagged this picture right when we were getting ready to start. Jaden was having  a seizure. 

Jaden and her Auntie Wendy who spoils her rotten!

All of the Lane grandkids except Liz's kids

My whole family that was at the baptism. I just realized that Liz wasn't there either.

Ummm, Sisters...Jaymi fell in a pothole and I still had the camera in hand....I couldn't resist.

Jaden with Aunt Wendy, Uncle Tim, and Darcy. This is the dress that I made for Kim about 15 years ago.