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.