cranial treatments

I've been taking Jaden up to Salt Lake to have cranial treatments done. She's had one Monday, Thursday, Saturday, Monday and then she will have another one on Wednesday. It seems to be making a huge difference. She has now gone 5 days seizure free. Each day she seems to be acting more normal. I would say she is at 90%. There is still a small portion of her that's wacked, but she is definately improving. On Wednesday she has her last appointment at Primary Childrens. On Thursday I'm heading down to Southern Utah to see Ron's parents one last time and then on Friday on over to Vegas. Then Saturday morning we get to fly home. Yeah!!! I'm so excited!!!! We fly out of Vegas. It's much cheaper because Alaska Airlines has a hub in Vegas and not in Salt Lake. Since, we still have our house in Vegas and my sister Liz lives there, it will be worth it. I can't wait to come home.

Jaden's Hospital Stay

I'm playing around at my cousin Kayla's house. She's teaching me how to upload my videos in a smaller format. Anyway, this is the video of Jaden in the hospital. Don't feel bad, she is MUCH better now.

4 days seizure free

Today was my nephew Krew's 1st birthday. I didn't get any pictures of the cake, but I did snap a few pictures of him and Jaden before church. Jaden is looking so much better than she was 2 weeks ago. The dark circles under her eyes are disappearing, the bruises on her forehead are gone, and her color is coming back. She has gone 4 days now without a seizure. She is doing so good. I have taken her to SLC every other day for cranial treatments. I think they are helping alot. I feel like I am seeing an improvement every day. She's getting easier each day. She is still a little crazy, which is just "Jaden". Today at church she asked the little deacon passing the Sacrament if she could give him a kiss.

Notice how big the muscles are in her jaw. She clenches so hard during a seizure that after the millions of seizures she had her jaw muscles started over developing.

After thought

I had an after thought about the airplane post. When Jaden told me it was soooo boring, well I think she really was bored because while we were up in the air, I looked back at her and she had taken her seatbelt off and was doing a head stand on the seat.

This reminds me to tell you a funny Jaden story. While she is getting better each day she is also getting her wit back. Last night she got into trouble because she took a pot of spaghetti noodles and dumped them all over the kitchen floor and was on her hands and knees playing in them. This was literally within 5-10 min. after letting her leave the living room unattended. Anyway, because of it Grandpa put her in a straight jacket he made for her. (I need to get a picture of it and post it.) He puts his pajama top on her backwards and then wraps the arms around to the back and ties them. She can't use her hands this way. It's been working great:) Anyway, my brother Jake was teasing her. He was standing right in front of her saying things like, "I bet you wish you could hit me, Ha ha". He was enjoying taunting her. Well, a few minutes later she casually walks up to him, turns around and sticks her bum out at him and farts on him, then casually walks away. I know that shouldn't be funny, but we were all in stitches laughing.

Hospital Pictures

These pictures were of her last week in the hospital. I just finally found a computer that would read my camera card. So they are a week old.

I have a video of this that I want to post. I need to figure out how to post a video first. The file must be too big or something. If I get it figured out, I'll post it. It's kinda funny/sad. It'll show a little of what she's gone through. This picture was taken right after she had all of the EEG cords taken off of her head, so her hair was wild.
Krew and Jaden
Kim, Jaden and Jake (Kim's husband--not my brother or son). There are 3 Jakes in the family now!
Kris, Jaden, Jaymi and Krew.


You can tell how "not there" she is in these pictures. Part of it was medication and part of it was just how she was then. She had no body control. She couldn't focus or use any fine motor skills. She is doing much better with that now. Everyday she SLIGHTLY gets better. I wish it were quicker. She is starting to recognize pain. Last night she bumped the door frame and she grabbed her head and said ouch. We were all shocked. That is an improvement. She is also starting to finish sentences instead of stopping mid sentence. I can tell there is more thought process going on. Now if I can get her to quit being so naughty. This is a tough one to survive!!!

Flying High

My brother Travis flew up from St. Geoge to Mt. Pleasant yesterday. He is working on getting his pilot's license. He was working on his solo hours. My Dad took Me, Jaden, and Sam up for a ride. I thought they liked it, but when I asked Jaden later in the day how she liked flying with Grandpa she said, "It was soooo boring."



Dad, Jaden, Travis, Vicki, and Sam
Jake, Travis, Jaden, Vicki, Sam
Sam and Jaden on take off.

Quote

I went to the show last night with my parents. We saw "Emma Smith, my story". That movie was filled with so many awesome quotes. If anyone hasn't seen it that plans on going, it would be well worth it to take a notepad and pen. I know it's in a dark theater, but there were so many more I wish I could have remembered them all. The one that stuck out in my mind the most was,

"Strength is not something you have, It's something you learn."

That's how I feel about my experience. I'm not really that strong, I'm only learning how to be.

Good News!!

Okay, I said yesterday that my attitude changes constantly. Well, today was such a good day. First of all Jaden had an appointment at Primary Children's at 1:00. I love Dr. Filloux so much. He is the nicest and coolest guy. He's so patient with Jaden and so nice to her. Let me see if I can put his explanation of her behavior in writing. He said that her brain was so overworked and so exhausted from all of the seizures that it was like it had just run a marathon. He said that it is still exhausted and has temporary brain damage. He said that he is confident that it is temporary brain damage because the MRI looked so good. If it were permanent then it would have shown up on the MRI. So basically, the frontal lobe which he said is what controls her thinking and decision making is in a recovery period right now and will need time to recuperate. I love how conservative he is with medication. He has her on a very low dose of zonegran. She only had 2 seizures yesterday. Even though they are not totally gone yet, he said he would rather give her more time to have the seizures stop completely than jump the gun and increase the medication if it's not necessary. He also said that he could give her medication for the behavior, but he hates to do it because it makes them so lethargic, drowsy, and out of it. I told him that my approach is as little medication as possible and he said great then we will just wait and see how she does. Also, her coordination is still a little off. He had her do some coordination tests. He had her reach out and touch a toy with her right index finger and then with her left. Oh, I forgot to mention that prior to going into the hospital and all during her stay in the hospital she quit using her left hand/arm. It was as if it were paralyzed. He said there can be temporary paralysis with the seizures. So back to today. When she did the pointing test her right hand was fine, but her left hand had a hard time touching the toy. That was so much better though than 3 days ago. Also, he had her hold her hands out like she was superman. The right hand was fine, but the left hand was fidgety. It couldn't hold in place. He's hopeful as the brain recovers that it will all go back to normal. She has another appointment with him on Wed. April 30th.

The next thing we did today was take her to the cranial sacral appointment. Now this was really interesting. Six months ago I would have thought this was all soooooo crazy. However, I've read a few books on this kind of stuff (energy work) and then my experiences with Tamara. I don't understand energy work, but I know that there is something to it. It really is valid. So with the cranial massage, the lady started working on the base of her head. It looked like she was holding pressure points. She said that her energy was like it was stagnant. It wasn't flowing hardly at all. So she worked with different channels and got the energy flowing. Now I know this will sound crazy, but she said that her spirit was out of her body. She said that when children go through a lot of trauma they disconnect from their bodies. It's interesting because I told the doctors at the hospital that I was worried about her not feeling any pain. She would fall face first on the tile because of a seizure and get a huge goose egg on her forehead and then when she would come out of the seizure it was as if she had no injury. I would ask her if her head hurt and she would just look at me like what are you talking about. Another time about 2 weeks ago she had her thumb in her mouth when she went into a seizure. She clenched down on her thumb. I was so afraid she was going to bite it off. When the seizure was over and I got her thumb out of her mouth it swelled so huge immediately. It was so swollen that the skin was shiny. It looked like it was going to burst. Well, she never even looked at it or said yeah or nay. I was so shocked that it wasn't killing her. It was so strange. So, I told the Drs. that she didn't react to pain. Well, this lady today told me that's why her spirit was separated from her body. She said that by doing this the spirit couldn't feel the pain and trauma she was going through. She said that if they (spirit/body) disconnect then the spirit can deal with what's going on with the physical body. She is going to work with her over the next 2 weeks to get Jaden reconnected with herself. She said that once she is comfortable with her physical body again then her spirit will stay and she will have full feeling and emotions back. Jaden NEVER cries, she told me that this will change once she's done working on her because she will be in full connection with her body and that is so much healthier. Kinda weird I know, but I really believe it. Jaden has an appointment with her again on Thursday.

Now I'm going to get my camera and see if I can get some pictures posted.

Oh, I forgot to mention that in addition to all of the behavior problems, Jaden is also loosing her hair. She has huge bald patches in the back. Both Dr. Filloux and the energy lady believe that it is stress related. Dr. Filloux said that if it doesn't get better as she gets better then down the road he will do blood tests to see if she has an immune disease such as alopecia.

P.S. I forgot to say also that part of the behavior problems is the lack of using the toilet. She pees and poops in a diaper. We first started putting a diaper on her when the seizures started increasing because she would urinate during a seizure which is totally out of her control. She was having so many seizures that I was going through a load of laundry a day just for her. It seemed so weird to put a diaper on a 4 year old, but finally I decided it was the best thing. Now that she is hardly having any seizures I took the diaper off and put her underwear back, but no she peed 3 times yesterday. I finally put the diaper back on her. It's depressing to change a 4 almost 5 year old. On a good note, Dr. Filloux and Diana (the energy worker) both weren't surprised by it. Dr. Filloux said when her brain is healthy she will snap right back to normal. Diana said that it didn't surprise her because her bladder (energy speaking) was completely shut down.

Sunday update

I haven't posted for a few days, but I think it's because I have a whole string of emotions. I'm not sure how I'm doing or Jaden for that matter from hour to hour. One hour it seems like an easy trial like it's just life. Then the next hour I want to cry and I'm not sure how I can continue to deal with all of this. Sometimes I feel sorry for Jaden and sometimes I feel sorry for myself and then sometimes I feel sorry for my other 5 kids that I've hardly spoken to for the last 2 weeks. I feel so bad that I'm not home with them and yet Jaden is more than I can handle right now and I know it's so important to get the treatment she needs. So I guess with all of that being said, this is the update. Jaden was released from the hospital on Friday. They said they could keep her longer if I wanted, but since I was a seasoned Mom of epilepsy that if I wanted I could take her to my parents. They want me to stick around Utah for the next 2 weeks for follow up appointments to make sure she is stable enough to return to Alaska. This means that I will have left my family on April 2 and will return on May 3rd. I guess in a way it makes me feel somewhat angry. Sometimes, I feel like I'm failing the spiritual side of this trial, but then again in an hour I might feel more positive. Okay back to the update. Jaden has had only 4 seizures a day for the last 2 days. You would think that it would be something to jump for joy over only her behavior is out of control. I literally mean out of control. She has to be held every waking moment. You HAVE to hold her. If you don't she goes on a destruction path. Within 5 seconds of letting go of her she will find something to pick up and throw. She will take her hands and clear a whole shelf. She will run to the bag of dog food and grab two handfuls of food and throw it. She did the same thing with a bag of wheat my mom had in the kitchen. If you let her feed herself she will throw her food. She will dump it upside down. She will even dump her drink. It's insane. So you might be asking WHY????? Well, the neurologist told me that she has the worst case scenario for childhood seizures because they are frontal lobe seizures. The reason they are the worst kind is because the frontal lobe controls your personality, your thinking skills, your impulses, your decision making, all of that. He said that in the 24 hour EEG monitoring that he did, he found no normal brain activity in her frontal lobe. In between her seizures she has "disruptions" in activity. He said because of this it doesn't surprise him that she has this kind of behavior. He said in fact it is really common for kids with frontal lobe seizures to have behavior problems. So I asked him what could be done. He said that the only hope is that as the medication eliminates the seizure activity that hopefully it will return all of the brain activity in the frontal lobe back to normal. He said it does for some and others it doesn't. Oh, if your like me you're wondering if she had brain damage from all of these seizures. Well, you'd think, but he said her MRI was totally normal and that her brain looked great. Another thing I might mention is that despite all of the horrible behavior she is as sweet as can be. She tells everyone she loves them. She says thank you for everything. She has such a sweet countenance. In fact she does all of this with a smile on her face. It's sooooooooooooo frustrating!!

Well, hopefully this helps you understand my frustration. Tomorrow I'm taking her back to Salt Lake to Primary Children's. She has an appointment at 1:00 there. After that appointment she has an appointment with an energy specialist for a cranial sacral massage. (I'm know I'm probably spelling that wrong. I've never seen it written out, I've only heard it said). Anyway, I'm not sure what to expect from that, but I've heard it does wonders working with the energy channels in that way. Of course, I'm also getting kind of discouraged thinking that each thing is going to help and then it doesn't.

Okay, I'm going to quit. I've been so negative tonight.

Primary Children's Hospital

Okay, I know I said earlier that I have learned to never say never. Well, I guess I haven't really quite learned it yet because I ended up taking Jaden to the hospital even though I said I never would again. We tried everything. Well, almost everything. There are a few more things I'm going to try, but first let me catch you up on the latest. Sunday morning very early we brought Jaden in. Her seizures were getting so intense they were scaring me to death. They were lasting longer, they were every hour, and it just seemed to be taking too much of a toll on her. The medical option now became the lesser of the two evils. But I have to say I LOVE PRIMARY CHILDRENS. The doctors are amazing. They all have a brain and they are just wonderful. They agreed that my experience in Seattle was a nightmare. They are very conservative in their approaches and they want me to continue my search for alternative help. They are very much in favor of energy work and said anything I can do to help they would appreciate. They agreed that they don't have the answers to seizures and they want whatever it takes to get her seizure free. I can't begin to express how thankful I am for them. They didn't think I was one bit crazy for taking her to alternative help and they want me to continue with it. It's a dream come true for us. I LOVE THEM.

I will try to summarize where we are at now and then I need to go because someone else is waiting to use the computer. (I wish I had my laptop with me so I wouldn't have to use hospital computers.)

So she had an MRI today. It came back normal. This time it was done with contrast, but it was all still normal.

She is only on one med. They are trying zonegran this time. They had her on dilantin when she first came in and within one day they started her on zonegran and stopped the dilantin (very conservative!!!). She is still having quite a few seizures, but they are much milder.

They also did a 24 hour video monitored EEG when she first got here. That was awesome because they got to really see her brain activity. Okay I feel bad that this person is still waiting, so I will post tomorrow and let you know the details of the EEG.

Love you all.

update again

So I haven't posted the last two days because I've traveled 1800 miles. Wednesday morning last minute I bought plane tickets for me and Jaden to travel South with Penny. Penny's 3 weeks were up and she was heading home. Jaden obviously, still wasn't any better. If anything she was worse. So I decided to come with Penny so I would have help traveling. I really felt like I needed to bring Jaden to Utah where I could find more help. There are so many more choices here for help. Tonight we took her to an irdologist. He took pictures of her eyes and on Thursday he's going to give me a regime for her. He feels that he can stop her seizures. I'm also meeting with another alternative Dr. next Wednesday. I feel very strongly about him. At this point what do we have to lose, right? Maybe a few 100 bucks is all. So far everything is the same except that her seizures seem to be less intense. They aren't lasting as long and they don't look quite so painful. Russell (Ron's brother) is a chiropractor. He has been doing N.A.E.T treatments on her since we've been here.

Me, Bob, Penny, Russell, Jeremy, and Natalie got to go to dinner tonight. That was a lot of fun. I also got to see Russell and Mindy, and Jeremy and Natalie's new homes. They are both so beautiful. They all did a great job. Jeremy and Natalie have the best theater room. It's awesome.

I'll be staying the next few days in Cedar City with Russell and Mindy and then next week I'm going to head up North to see some of my family.

Okay, again I'm jumping around. I think English teachers would cringe over my writing. I guess it would help if I didn't wait until after midnight each night to post. I'm so exhausted all the time. Jaden is almost like having a handicapped child. She is a 24/7 job.

Hikes with Grandma

  Here are some pictures we took over the course of the last 3 weeks. I'm in a huge hurry, so I can't say more. I will try to post tonight or tomorrow morning.

Grandma Penny and Sam
Brent, Jaden, and Jake
Sam, Jaden, Grandma
Sam and Brent (pre-haircuts:)
Jake, Brent, Grandma

Jaden and Grandma---rainbird trail
Jake and Travis---rainbird trail
Jaden had 2 seizures during the hike, so she didn't last the whole time.