See I'm trying...

OK, so we've been home from the hospital for a week and a half..... It's been a tough week and a half. Lots of ups and downs....... Sis said that she told the kids she had a "stwa wate er" put it. It is sooooo cute. She knows when she has bad seizures, and will tell you if she had a bad one, or if she is having lots of little teeny tiny ones. I usually know before I ask, but I ask just to clarify.

She's had some big ones since we got home. The Dr is not Really really concerned (he is a little) because he says that her brain is not as tired from the teeny tiny seizures so the big ones are able to come on through and present themselves. Last week we had some concerns because she was having an awful time walking. but Friday afternoon she just got better. Not sure how but it is a little better. Still not perfect, but again the Dr is not concerned because he says it is not going to be forever that she will have trouble walking. Needless to say, we would love to get the surgery done sooner if possible. I would gladly postpone turkey dinner at home for a week at the hospital betting my baby girl all better.... But apparently this is not in God's plan or in Dr. Wheless's plan either. Oh well. When the time comes, we will be ready.

On the up side, She is taking her medicine like a champ!!!! Before she was taking it in applesauce. When they gave them applesauce at daycare she would push her whole plate away. We offered her to try it in pudding, in frosting, in ice cream even.... but she would have none of that..... I think it was because she associated her medicine with applesauce and she hated that, and she didn't want to associate her medicine with ice cream or frosting and stop liking those things.... So the best thing we found to disguise it in now is the ready made cheese cake filling that you get by the rest of the cream cheese products. SHE LOVES IT!!!!!! She says "That is Scrumpdilly yumptious!!!!!!" And "That is soooooooooo tasty!!!!!" it is so cute. And she even feeds herself! I'm so excited. Not sure how long it will last, but enjoying it all the same!!!

Anyway, nothing special to update on really. Just didn't want to go a whole year without an update ;) Love to all!

Really a whole year ago???

Seriously..... it's been over a year since I updated this thing..... I am truly sorry. Things were going OK.... nothing too out of control. Earlier this year we went to Memphis and Karlie's EEG had improved greatly!!!!! We went back about 4 months later, in September and things had gone downhill. Her seizures were getting worse. We actually had the technician call the Dr when we were getting the EEG ran. The second she started falling asleep, her seizure activity started kicking into gear. It concerned the technician but the Dr just told us that was the kind of seizures we had. (for the medically inclined smart people, they are called cryptogenic complex partial seizure disorder)

Anyway, her medication was not working so the Dr said we needed to try a German drug. We didn't think it was going to work, but slowly the medication finally started working. It worked for about a month (or so we thought) but the dumb ole seizures came back. So they wanted us to try a Canadian drug. We went back in October for another appointment and the Dr tweaked her meds again. Things still were not where we/he wanted them. Karlie was having trouble focusing in school. Her and Killian are in pre-K. They go to school for about 3 hours a day...... Well Karlie was sleeping for about an hour and a half each day...... and her naps were getting longer and longer.... The seizures just kept zapping all that poor little girl's energy.

So I called Dr Wheless back and his nurse said that he wanted us to be admitted into the EMU (epilepsy monitoring unit) This is where they super glue the electrodes to her head and they watch her for 24 hours a day. They figured they would not have an opening until sometime in mid November for us but they were going to call and see if there were any cancellations. As luck would have it, there was a cancellation, and we were to head to Memphis to be admitted the following Monday to the EMU. (folks, they got us on the EMU in 6 days. This was a true blessing, though we did not know this until the day we left for Memphis) The week before we left, Karlie just continued to get progressively worse as each day passed. By the time we were ready to leave for Memphis on Sunday, Karlie was very bad off. It was not until we were checked into our room on Monday we found out just how bad it was.

The second the nurse walked into the room, one look at Karlie and hearing her, she rushed into action. We had brought with us a dose of Valium that we were to give her if we saw large seizures, or clusters of them. We were seeing clusters of them when we left Sunday, and they continued on into Monday. She asked us to administer the Valium and they gave her oxygen also. She sounded like she was having trouble breathing. We got her hooked up to the monitors and called Dr Wheless. He was not happy with the seizure activity and ordered an iv to get her more Valium to slow down the seizures.

We were supposed to have an MRI first thing Monday morning, but Karlie was running a fever so we were unable to do that. Wednesday Dr Wheless wanted to draw out spinal fluid and see if there was anything simple that he had overlooked before. The only thing he really found was that she was missing a vitamin that might cause her to have seizures. I can not for the life of me remember the vitamin, but he said her body showed barely a trace of it. So add this to her iv. She then had a MEG scan and an MRI scheduled for Thursday. She had to have the wires removed for the MRI. That sucks. Because they are glued into her hair, and it hurts to try and get all the glue out. Anyway she still was not getting any better, so the Dr wanted us to talk to a surgeon about putting in a VNS (Vegus nerve stimulator). This is basically a pace maker for seizure patients. It is programmed to send electrical pulses to the brain that they hope to slow down the seizures. On Friday we were scheduled for the VNS. Our baby girl came out like a champ! They brought her up to the room after she got out of recovery and hooked her back up to the wires. The Dr came by about 2 hours later and started up the VNS. He bumped her up 3 times that day. He said she was handling it great.

He wanted to continue watching her over the weekend. (yeah we had to spend Halloween in the hospital), but the Hospital was awesome. They had all sorts of activities planned.... reverse trick-or-treating, a party downstairs, free costumes for the kids to go to the party in..... they took awesome care of us. On Sunday Dr Wheless came in and said that her day time EEG was AWESOME!!!!!!!! Very few seizures. But her sleeping EEG was only 25% better. Not good enough to suite him. So he wanted to start her on a Gamma Globulin Therapy. hoped that might make things better. It was going to take him 3 days to get the full dose of this in her. Kelly and I switched. He came to stay with her on Sunday and I came home to Bubby.... he is having a hard time with all this. He wants so bad to go to Memphis with us.

Well the Gamma Globulin Therapy did not help..... So Tuesday he came back and gave us 2 options......
1) we can try the Ketogenic Diet. This is a very strict, very precise diet..... no cheating. Probably not the best for a 5 year old STUBBORN little girl who loves spaghetti and mashed potatoes and gravy. More than likely not on the diet. I have also heard that with this diet it is very hard for the patients to keep weight on them and the Dr already thinks that Karlie needs to "bulk up" a little.

2.) Brain surgery....... yeah, it's taken a few days to be able to say that and feel comfortable with it...... They want to do a corpus callosum. Otherwise known as split brain. They will go in and separate the 2 halves of her brain. The hope is that this will make it so her seizures will not "ping-pong" back and forth across the two halves. They will do a full corpus callosum. They will completely separate the 2 halves.

We go back in 6-8 weeks and see if the VNS has taken care of the sleeping seizures. If not then we schedule surgery. Ideally we would like to go ahead and have the surgery before Christmas. Yes, that is rough, but we will only have to stay at the hospital for 4 days after the surgery and if she was feeling up to it, she could go back to school a week later..... YES, after brain surgery!!!!

She had a rough time last year at Christmas, and didn't even get to enjoy it. We don't want her to miss out on 2 in a row. And if we have to postpone Christmas a little, so be it.

Ok.... so it is late enough, and I have put down a lot of information ( guess that's what I get for the year long lapse) but I know everyone wants to know how she is, and what is going on. So what we need is for tons and tons of prayers...... for us to make the right decision, for Karlie if she has to have surgery, and for the Dr's also if we have to have surgery.

I will try and do better with updates to let everyone know what is going on.

Thank you for all your prayers, love, and support.

We went back to Memphis!

OK, so we went back to Memphis early this week......let me set the stage. Last Monday, my Grandma passed away. (the last time we were in Memphis, three months ago, my grandpa passed away also.) So Thursday we headed to Kansas City for the Funeral that was on Friday......not easy, but she is much happier being back with my Grandpa up there in heaven.....so we know it is for the best. But that doesn't make it any easier. So then we headed back to Enid Friday after the funeral. I got a ticket to the OU game for Saturday, and then we left for Memphis on Sunday. I'm pretty sure I told you all before, but it is a 10 hour drive to Memphis from Enid.

Well, we made it to North Little Rock and I was getting Karlie and mom and me some supper and when we were headed back onto the highway, we got in a wreck. According to the police it was my fault, but I don't know that I was 100% at fault. But they police showed up and just moved us off the intersection. Not really taking notes or looking too closely. Anyway, minor damage and we were back on the road. We made it to Memphis at 11 pm. (it took a bit longer than 10 hours). Now, keep in mind that Karlie was supposed to be sleep deprived for her EEG on Monday morning. She went all day Sunday without a nap. Karlie stayed up until 3:30 on Monday morning. She did awesome!!!!

We were late getting up Monday morning.....Karlie and I were a bit tired. But we were only about 5 minutes late for our appointment. Not too bad all things considered. Dr Wheless was very impressed with what we told him about Karlie. We hadn't seen a seizure in about 4-6 weeks. Then we headed across the street for Karlie's EEG. They wanted her to sleep for this. She did awesome! They even let me snuggle up with her in the bed. (I slept pretty good myself :) couldn't help it!!!!) Anyway, the lady that did the wires for Karlie was the same one that had done it one of the last times we were there 3 months ago. She remembered us even!!!

After the hour long EEG we went shopping! Karlie got a new hat (To cover up her yucky hair from the EEG goop) and we went shopping!! Then we went back to the hotel and went swimming for a bit. (anything to keep Karlie going at this point. We were hoping to get her to bed early......) she started going strong!!!!!

We finally got to bed and left Memphis on Tuesday morning after a good nights sleep. No accidents this time.

Bottom line....I spoke with the Dr's nurse today, and she said that Dr Wheless said that Karlie's EEG had improved 50-60% since the last time we were there 3 months ago. Hooray!!!!!!!! That is awesome! We go back in 4 months for another appointment and another EEG.

So, thank you all for all your prayers. They are all so much appreciated. They have helped so much.

Article on Karlie

This is an article that was in our newspaper Sunday.......Front page even.



Family logs lot of miles battling childhood epilepsyBy Kasey Fowler, Staff Writer
“She would be walking or sitting and just fall over.”Amy Earhart noticed last October her 3-year-old daughter, Karlie, was falling over at random.“She would be in the middle of a conversation, lose balance and fall over,” Amy said.Her parents became worried one night when these episodes happened almost continuously.“She did that like 20 times in 45 minutes, so we took her to the emergency room to rule out a brain tumor,” Amy said. “They did a CAT scan and said everything looked normal.”Karlie was taken the emergency room on a Friday. Doctors there asked her parents to schedule an appointment with her doctor on Monday.That’s when Karlie was diagnosed with childhood epilepsy. According to epilepsy.com, epi-lepsy is a neurological condition that affects the nervous system.It usually is diagnosed after one has had at least two seizures not caused by a known medical condition, such as alcohol withdrawal or low blood sugar.Epileptic seizures may be related to a brain injury or family tendency. Most of the time a cause is un-known. Karlie’s twin brother, Killian, is not affected.“I’ve asked several (professionals). They said he was fine as far as seizures,” Amy said.Karlie saw a neurologist in Enid, but he was not a specialist in childhood epilepsy, Amy said.“We don’t have any pediatric neurologists here in Enid.”Neither St. Mary’s Regional Medical Center or Integris Bass Baptist Health Center specifically treat or have programs for children with epilepsy.“They sent us to OU Medical Center in Oklahoma City,” Amy said. “We went to them a couple of times, but she kept having seizures.After their visits to OU Medical Center, they were referred to a hospital in Texas.“They set up for us to go to Cook Children’s Hospital in Texas, but there was a six -week wait,” Amy said.Amy refused to wait six weeks to get Karlie help.“We called for an appointment in Tennessee,” Amy said.“We basically drove 11 hours for a doctor’s ap-pointment.”They drove that distance with hope and no guarantee Karlie could be helped.Once they got to Tennessee, Karlie immediately was admitted on a emergency basis.“When they admitted her, she was basically in a constant seizure, and it was even worse when she slept,” Amy said.Shortly after admission, Karlie was started on a video EEG.The video EEG meant Karlie had 20 or more sensors placed on her head to monitor brain activity. She also had a video camera on her all the time and a person visually monitoring her in the room.If the person in the room thought he saw a seizure, he would push a button. Someone would go back to the video and brain scans and look at what happened visually and in the brain.“She was having sub-clinical seizures,” Amy said. “They are all happening in her head.”An MRI was done and again confirmed there were no tumors in Karlie’s brain.Karlie’s new doctor, James Wheless, did not think surgery was a good option.“Dr. Wheless told us she was not a good candidate for surgery because her seizures were generalized over the right side of her brain,” Amy said.Karlie spent about a week in the hospital and now is on a combination of drugs to try to control her seizures.“The doctors are very confident we can get it under control,” Amy said. “It could take a year to two years to get completely under control.”Karlie has been on several different combinations of drugs to try to control her seizures.“Seizures are like fingerprints,” Amy said. “No two kids are the same, and they can’t be controlled by the same drug or combination of drugs.”Karlie’s drug combination could change again, even before the next trip to Tennessee, planned for mid-October.“We will go to Tennessee about every two months until they can control the seizures,” Amy said.Amy has been making the trips to Tennessee without her husband because he has had to work.“My mom goes with me. Mom has helped a lot. We have a lot of help from family and friends,” Amy said.Killian hasn’t been taking Karlie having seizures well, his mother said.“He gets jealous of the attention, really jealous,” Amy said. “We tend to ask her a lot because we can’t see. He doesn’t understand that.”Karlie’s mom is hoping the seizures will go away on their own, but it isn’t a sure thing.“Because they can’t find a source, she could grow out of it, but it is a wait and see thing,” Amy said.Karlie is just like any kid when she isn’t having problems with her epilepsy, according to her mom.“When she is having seizures she gets tired,” Amy said, “When she isn’t having seizures you can’t tell any difference from any other kid.”

update

OK. So I have not done real well at updating. I'm sorry for that. Things have been crazy around the house. We had the start of College football season 2 weeks ago. (huge thing at my house) and then last week (after the very first game) I decided we would scrape popcorn off of my ceiling and paint the walls.........major messy job. so we had to clear out my living room completely and then do all the work, get the carpet cleaned and then move it all back in. Huge ordeal. Then we had a garage sale last weekend.

Anyway, Karlie is doing well. I think that her seizures were doing really good once we got back from Memphis. She would sleep so hard that she would talk in her sleep. She would say the funniest things while she was sleeping!!!!! but she has kinda quit that for now. I think that the seizures are creeping back up.....But she told me the other day that she likes her new applesauce (her applesauce with out the valium in it) But she also told me that she is still having little bitty seizures.....they are the sub-clinical ones because I don't actually see them. But I can hear the catch in her breathing and see the tiredness in her eyes. I have been in what seems like nearly constant contact with the dr's office. They are a bunch of really great people Dr Wheless's nurse is very nice. I have never met her, but talked to her a phone. Anyway, I will try and update more a little later, but that is the latest for now.


sorry I have been so lax about the updating.

Message from Karlie

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gdcgfysr-w8ae09a8s8ISWSD89E7780000m oivhvbbvghgtytt6t6tttty97fd67t8yyydy6satop,lkvvlogff--99999999999999999999999999999999999999999999999999999999999999999999999999
8yyuhyyfgjggfgvcggfcggffgffcccvcvvbb mlll,kkooppop8u7yws3er/';.luyxzzzzzzzzzzzzzzzzzmjjiue
j7ujt8ujuujg8yyyyyyyyyyyyyyyyyyyyddddddddrruu ilj ces
cccftdrrddddddddddddrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrsaye533333333333333
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa35jkweeflkjkdkjsadkjjfrrrrttgff

Karlie just wanted to type everyone a message and tell you thank you for all your prayers. We all appreciate them a lot. She says hi and we hope to see you all soon!!! Love you all!

Latest

OK, so it's been a while since I've updated everyone, and I'm sorry about that. But Killian and Kelly got here, and things have just been crazy busy around here. Karlie's little face just lit up when Killian and Kelly walked in the door. She said "My bubby!!!!!" and he ran up and gave her a great big hug!!!!

So, anyhow, we got moved up to the EMU, and into the care of Dr Wheless. This is the guy that people have told us that patients come from all over the United states to see Dr Wheless. In fact our EEG tech told us today that we were very lucky to get him. And was a little baffled at how we arrived under him. Especially starting out with Dr Lynn (apparently they are "competing" dr's, or at least under 2 different groups) Anyway, I think the last update Karlie had just had a Spect test maybe, and then we were going to bet a base line test the next day. But she had too many seizures that night. That was even after 25 mg of Valium......now that is a serious dose of Valium. You can not begin to imagine what a drunk 3 and a half year old looks like, but at the time it was very funny.....she licked her frog's eye (she thought it was a lolly pop) and she giggled and kept playing with her numb lips. It was kinda funny. Anyway, Dr Wehless told us that she was not a good candidate for surgery because she was having seizures over most of the right side of her brain. But he felt he could get a pretty good hold of these stupid seizures with medication (especially now that we know what kind she is having.) He said that he has several options, we just have to find the right combination. So we are here at least another night. We are hoping to break outa this place tomorrow. I just want to get home and enjoy my own bed, my cool house (it is too warm in this room) and a nice ride on the motorcycle. Those are the just a few of the things I miss.

Anyway, I am not sure what will happen over the next few weeks, but Karlie can't go to daycare because of the steroids she is on. They lower her immune system and they don't want her exposed to anything. We were supposed to start summerhill on Monday. But, we also have to trek to Kansas City. My grandpa passed away this afternoon at about noon. And his funeral is Wednesday. I tell you, when it rains, it pours right? So we have a 9 hour trip back to Enid tomorrow (hopefully) and then we will be home Tuesday to get things together then it's back on the road again on Wednesday for another 6 hour trip to Kansas City. I tell you, I feel like a traveler this week.....feel like I've dang near been all over..... Anyway, so please pray for all our safety traveling so much over the next couple of days. (I'm sure everyone in the car would ask for it, especially if I'm driving. you guys all know how I am.....)

So that is the scoop, we are heading home tomorrow and then after some time, we will be doing another EEG (not sure if we will have to travel to Memphis or not) to see if things are helping, but let me tell you, it is glad to have my spunky, happy, baby girl back. It is awesome