Message from Karlie

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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

Things are moving

OK, so here is what has happened since last I updated.....We were moved to the EMU (epilepsy monitoring unit) We moved up here yesterday. From what mom found out, a kid got moved out, and the one that was supposed to be moved in was, for some reason unable to get up here.....so we got the spot. We spoke with Dr Wheless (who we have been told by many that he is by far and away the bestest around. If you look up on the Internet, his name is attached to most epilepsy studies. And Jules and Kelly are very happy that he is an OU graduate.....) He ordered a SPECT test. Now I don't know much about this test, but what they do is have to order in these radioactive isotopes (they are not kept here because they do not have a very long life) so they were not even sure that they would be able to get this test run this week because they usually run them earlier in the week. So that was a blessing to get to do this so soon and not have to wait until next week.

They have to wait for Karlie to have a seizure and then they have a minute to get the dye injected into her body. Then they have up to 6 hours to the pictures of her brain taken. This is supposed to be just a stronger MRI. They had her lay perfectly still (they had to sedate her for this test also.) and then this machine went around her head and took pictures. They are supposed to do the same test tomorrow, but they don't have to wait for a seizure this time. This is so they can get a base line scan. However, Dr Wheless came in today and told us that it appeared that she had more seizures when she is sleeping (this would explain why when it's time for her to go to sleep, she says that she doesn't want to because it makes her seizures bad.) This isn't too bad right now, but in the long run, they can cause her to have learning disabilities. Right now Dr Wheless's plan was to try and just slow down her seizures when she sleeps so they can get the baseline scan tomorrow. So he said there were several ways to work on this but the easiest is to try and give her Valium and see if that slows down her seizures when she is sleeping. She just woke up from her nap and she is in such a good mood.

Right now we are waiting for Killian and Kelly to get here. We haven't seen them since Sunday. Wow do we miss them. We can't wait for them to get here. Karlie is getting a little restless lately. She has been in bed since Monday evening. She has been hooked up to EEG wires since Monday evening (with the exception of one day) She isn't really allowed to get up and walk around. She is really doing well considering all that. She has won over just about every nurse that has walked in the door. They think that she is the most adorable thing in the world (I'm sure they say that to all their patients, but it sure helps Karlie warm up to them a little better.)

OK, I think I've rambled enough here. Every time I get on here to type this I get another call or another nurse walks in to take vitals or to check on her. So if I repeat myself or ramble, I am sorry.

I also wanted to say to all our friends and family, thank you so much for all the calls and prayers. We appreciate all of them. We try our best to answer all the calls or return them as soon as we can. If we are a little slow, or we miss something we are very sorry. But feel free to call and check on us at any time. We don't mind it at all!!!

Thanks again! Love and kisses to everyone!!!!!

The surgeons have been called in......

OK, so we spoke with Dr Lynn today. He says that she is still having the constant seizures. He wasn't ready to start her on the new medication yet. He doesn't like to be pessimistic, however, he doesn't think that the medications are working (obviously yes.....)He wants to try it, but is pretty sure that it won't be will the cure all answer, so he wanted us to speak with the neurosurgeons. So, after the MRI, Dr Lynn came back in and told us that he had spoken with the neurosurgeon team and they were interested in her case. They reviewed the MRI and the took a quick look at the EEG, and came and talked to us. They mainly just asked us some questions (you know, the same questions we have been asked over and over again...is she developing normally, has she lost any skills, when did she walk, what do her seizures look like, which side does she look to when she has them, blah blah blah blah blah.....) and then told us that they were going to talk to their bosses and see if they thought that she was a good candidate for surgery. They said that she may not be (I'm hoping this is something they just tell everyone to not get their hopes up) anyway, they were going to go back and talk to Dr Boop and see what he thought and they would be back to talk to us tomorrow (Wednesday) If they feel she is a good candidate they will be running more tests on her. They figured that since we were here, they would do everything they could while we were here. This is by far the best place in the nation. They do about 4 brain surgeries a week. This is what they do......So we find out tomorrow if they are going to do more tests. We are looking at possibly doing a PET scan and a MEG scan. These are just better and better MRI's.

Have I mentioned how much I love this place???? Things have just fallen into place. And everyone here is sooooooo nice. We have just gotten the royal treatment. Everyone takes great care of us. They all have the cutest southern accents. And almost all of them are smiling all the time. But we have just been very very pleased with the love and care that all the nurses and Dr's have shown us here. We are in the most capable of hands here. We are just praying that these neurosurgeons are able to see what they need to see on the scans and that they are able to fix our precious baby girl.

Let me just say, that Karlie has been the best patient. She lets the Dr's and nurses look at her, she smiles at them, she talks to them. She breathes when they tell her too, she lets them look in her eyes and ears and list to her heart. She is doing awesome. The phenobarbital (sp?) is really making her loopy. She can't walk, she slurs her words, she has trouble eating I do not like her on it at all. I hope that they don't put her on it long term. It is awful. I hate seeing her on it.

Karlie's in the Hospital!!!!!

OK, so here it is......we made it to Memphis just fine (thanks to dad's GPS......which I will never ever leave home without ever again.....) W met up with my old salesman and his wife and they showed us where we would be taking Karlie to today (which ended up being the wrong place. Right, but wrong) any who, we made it to our appointment, Karlie was not really having a good day at all. Lots of seizures, and she didn't sleep well at all last night. Mom couldn't believe how restless she was. It's no wonder she was so tired. So, back to Dr Lynn. HE IS AWESOME!!!!!!!!He looked at Karlie and talked to us, and asked our concerns and within about 20 minutes he told us that he didn't know what we were there for (second opinion or as a new patient or what) but he wanted to get her admitted. He did not like at all, that she was on so much medication and was still having seizures. He did believe us that she was having too many to count. We basically told him that we told the family that we would be here as long as we needed to be. We brought extra clothes and we would be more than happy to stay as long as he wanted us to.

So we got admitted immediately. Withing 45 minutes we were up in a room, and within another hour we were hooked up to the EEG video monitor. Within another 45 minutes or so, Dr Lynn had been called and said she was having "sub clinical seizures" which means that to look at her you see nothing, but her brain is constantly flashing (for lack of a better word....but the seizures are like a constant lightning storm.) and that was why she was falling so much and just looked so drained because she was constantly having these seizures. And he told mom that he was very happy that we brought her to him when we did. They are a very aggressive hospital as far as getting her in and getting her seizures stopped. They ordered phenabarb (sp?) STAT for her, to calm the seizures. She was still showing the "drop" seizures on her eeg, but the other ones had stopped. She is currently passed out in the bed right now. We had a difficult time getting her to the bathroom earlier. Poor little girl was soooooo worn out and all the drugs, she was just drained!

So, thank you for all the prayers, we are here, and we are being very well taken care of. I can not begin to say how pleased we are with the care we are already receiving. Tomorrow we are having an MRI and the dr wants them to disect the right side of her brain on the pictures very thinly so they can try and determine where her seizures are coming from. Did I mention that we are very very happy with our decision to travel ab out 1200 miles round trip just for a dr's appointment????

So we will keep everyone updated on how things are. We are trying to take lots of pictures, I will figure out how to add them later.

Thanks for checking on us!

Sunday

OK, so just to update, tomorrow we are heading to Memphis. Not really sure what to expect, and what to hope for, but Karlie has had an awesome past few days. Very few seizures, and nothing big at all. She is still having trouble with her left hand and she is having trouble drinking out of a cup without a straw. But other than that she is doing great. I hate to say it, but we are hoping for a couple of seizures for the dr's appointment. I know that is bad, but that may be the only way we get an earlier appointment for her video EEG and everything if that is the case. Or maybe the dr will just look at her records and decide that she needs to be seen immediately. Anyway, we are packed for more than 2 days, but we will just see what happens.

Please pray for safe travel and the answers that we need to hear. I will update everyone when we get some answers.....whatever they may be

GREAT NEWS~!!!!!!

OK, so here is the good news of the afternoon.......I call Le bonheur Children's hospital in Memphis. They are able to get us in to see one of their pediatric neurologists...Dr Lynn. Everything came together like crazy this morning.......

I called and got transferred to this lovely lady named Cheryl. She was able to get us an appointment with Dr Lynn on Monday (yes, Monday August 11th~only 5 days away) for an evaluation. At that point they will decide if she can wait, or if she needs the video EEG and everything sooner. I spoke with the Dr's office, called the insurance company to make sure that my insurance will cover this hospital and Dr~which it does, spoke with my Dr's office to get the records faxed, which they told me would take 7-10 days. But Cheryl called and was able to get them to agree to fax them today (or tomorrow at the latest). Now this evening I am going to call the Ronald McDonald house and see if we can get in Sunday night.

So as it stands, mom, me and Karlie are heading to Memphis on Sunday. I have never driven that far east myself, but I am excited that we are getting Karlie in. If for no other reason than for the Dr to tell us that we shouldn't worry so much and she will be ok to wait until the September 8th Texas trip. That alone will be worth the trip. Or they will be able to get her in sooner.

Just wanted to let everyone know what the latest was!!!

Confusion

OK, so just a small update on Karlie. Things really don't seem to be going much better. Her vision seems to be blurry (apparently a side effect from one of her meds) loud noises are bothering her (she used to love loud music in the car) she is very emotional (always crying, and usually for me) and her left hand is cooler than her right. (more than likely because she only uses her left when she is forced to, and even then she doesn't like to use it. So, do I call the physician's assitant, who last time basically asked me what I wanted her to do the last time I talked to her, or do I call down to Texas, where they can't get us in until September, or do I call to another hospital and see if there are other things I should be doing.....I am just about at my wits end....



Everyone keeps telling me to "put it in God's hands" and that "He doesn't give us more than we can handle"......Well, I've put it in His hands, what else can I do with it.....but it is so hard to watch your child get worse. And I know He doesn't give us more than we can handle, however.......He sure pushes the limit some days.



So there is the update. Really nothing has changed.....just getting a little worse. Thanks for listening :)

Karlie

OK, first of all, this is my first post. So if I'm not good......give me time, I shall get it....

Since Wednesday, Karlie's seizures seem to be getting worse. We just can't seem to get them under control. They are just awful. Wednesday night she walked around like she was drunk, and she was choking on food. She also has been having trouble controlling her left hand. Like to pick up anything with it, she is just having trouble.

So, we called the Dr at OU Med Center in OKC and told her that Karlie's latest upage of pills was not working. She said that she wanted to refer us to Cook Children's Hospital in Fort Worth. She wanted them to evaluate her and do a Video EEG. They told us it would take about 5 days. (at this point, whatever it takes to get rid of my baby's seizures. I just can't stand to see them.) So I called back this week to let them know that she is getting worse. But guess what, her Dr is on vacation for 2 weeks. So, knowing that I didn't want to wait that long, I called to Cook Children's and started searching for the Dr that Karlie's records were given to. I left a message, and waited for them to call me back. This was Wednesday afternoon. I called back again on Thursday. They told us that we could get in on September 8th. (wow....that is a long time to wait.) But she assured me that was the soonest they could get her in.
Well Thursday afternoon, our friend Larissa that was watching the kids called to tell me that Karlie had a seizure right after she got up from her nap, went to the bathroom, and then came into the living room and had another seizure and lost control of her bowels. Well I called the on call Dr at OU and she not only wasn't very helpful, but she suggested that we come down to the ER at OU Med and see the on call Neurologist. So I panicked and called everyone I could think of...anyway, we headed to OKC (at about 80, because that is how I drive)
Well, we sat there for 6 hours waiting on the Neurologist to get there. Karlie was so good. She colored, played with a balloon, and played games on the laptop. She ate a peanut butter and Jelly sandwich and some cookies, and some turkey, and a popsicle. And didn't have very many seizures at all.
Well, the ER doc came in and said that as long as she was at her base line (basically what is normal for her) then there really wasn't anything they could do. He questioned us about the seizures she is having. When he asked how many she has in a day, we told her it was too many to count. He wanted a number, so we told him it was somewhere in the neighborhood of about 16 in a 30 minute period. He said all day, and we told him no, 30 minutes. And it is like that all day long. They just don't believe us on how many. Anyway, the new Dr said that we just needed to get a video EEG and to just wait until we could do that. It kind of seemed like he felt that our current Dr was treating the wrong kind of seizures.

So, at midnight-30 we headed back to Enid. Karlie had stayed awake and been a very good kid all night long. We made it back to Enid at 230 in the morning.....long day!!!!! So I stayed home with her today and she was just a normal kid. She played and fought with her brother, didn't have too many seizures and was more alert and just killed me. So we are waiting for September. Wow, August is going to be long.

OK, so there it is. My first post. Probably a little wordy, but hopefully I will get less windy as I learn how to do this.