We're still sz-free...

But Im getting worried. Im a worrier, I can't help it. Nathan's been stuttering a lot lately. I don't know if that's a side effect of the meds, an indication of sub-clinical activity or just a developmental issue because of the regression he's had. I've heard it's common for kids to stutter at certain points in their speech/language development. So, my theory is that because his speech/language has been so affected that this is just a typical "hump" to get over while his development is catching up. I hope that's just the case.

He's also been having trouble getting to sleep at night. Last night he didn't get to sleep until around 10pm.

He's still doing great at school. He's been mainstreamed an hour or so each day. That's definitely progress.

But, I can't help but worry.

Today marks two weeks...

Two glorious weeks since Nathan's last sz and three weeks since we had the extreme turnaround.

Our hospital stay for the 23rd has been reduced to just a baseline eeg. Dr B said we could cancel it... we've been through enough. But, when asked what she recommended she said she's curious to see what a "normal" eeg from him looks like -- see what his normal brain activity looks like. And, to be honest, I'm curious as all hell to see if he's having any sub-clinical activity.

I hope to God not. And, I feel pretty confident that he's having great stretches of normal activity. I wouldn't be surprised about a little bit here and there. But, his recent change makes me think we're so totally on the right path.

Dr. B did ask how he's doing cognitively and if we had concerns. Or, rather if we start having concerns we should get back to serious testing. We're still going to do the PET scan -- not exactly sure why or what she's looking for. But, I believe it's relatively easy????

Nathan is doing much better in school. He's gaining words back every day. He's showing a great range of emotions. And he's just understanding things. Oh, and he's following one and two step directions way more than he used to as well.

We're still pretty strict with what we'll let him eat though. I would say that close to 100% of the carbs he gets now are either from fruit or gluten-free pastas. I just feel that gluten was playing a part in his body not being healthy. And staying gluten-free so far has proved to be much easier than being on 10-15 carbs a day.

So... why would my MIL send the kids a big bag of halloween candy????? Ok, that's another rant that I don't have the time for anymore. :-P

One other thing. Nathan's teacher is male -- large (think ex-football player) and bald. I think Nathan really likes him and I also think he's good for Nathan too. Anyway, his last name is kind of long and as it is, nathan isn't very good at remembering names. So, he calls him, "the big guy". lmao. He came home from school today and showed me this picture he made -- he put a leaf under a piece of paper and shaded it in, kwim? He said, "look what I did with the big guy today". It just cracks me up.

Anyway, I just love who Nathan is. His spirit is so gentle and kind and loving. I have been so blessed by him. God, please let him stay!!!!!

Isaiah 58:8

Your light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you; the glory of the Lord shall be your rear guard.

AMEN!!!!!

Sunshine...

Nathan's last seizure was Monday, October 2nd. I began seeing arm twitches (which we believe are simple partials but can be precursors to complex partials and even generalized sz's) on Saturday. I didn't have a good feeling about that. I saw more Sunday morning and then 2 sz's that day. Monday, more arm twitches and 1 sz at school. At that point, we increased his felbatol (after consulting with Dr. B). He went from a total of 9 cc's to 10.5 cc's (over 3 doses a day).

Drum roll..... it's been a week and we have not seen any activity. I have noticed though, staring episodes where he's just staring off into space. These could be simply just a side effect of the med and he's just daydreaming or whatever... or they could be absence sz's. But, usually calling his name will pull him out of it. Not to have a black cloud over our heads... but sometimes it's hard to trust a good thing.

We thought we might get out of going into the hospital on the 23rd for more testing. But, since the breakthrough's last week, Dr. B thinks it's a good idea to proceed with testing. To be honest, I'm really curious to see what, if any, sz activity he's having.

I have to believe he's had a significant decrease in activity though. He's sleeping better, his mood is better, he's getting words back every day and he's done such a turn around at school that they've nicknamed him, "Sunshine". It was exactly 2 weeks ago today that Nathan bit his teacher and sent her to urgent care (again). What a 180* he's done!!!

I don't know how long this is going to last -- forever I hope, but I am so grateful for these last two weeks. He and Emily were actually playing together yesterday.

Thank you God!!!!!

6 days...

We had 6 days. Today Nathan had his first sz in 6 days. It came out of the blue. We were sitting on the couch playing with the camera in my phone, he was extremely lucid... and then it hit. By the time I ran to the refrigerator to get the magnet (in an attempt to swipe his VNS) he was out of it. Then a few minutes later, he was asleep on the couch.

Yesterday, I saw a few arm twitches, this morning a few as well. But, emotionally and cognitively, we've still had good days.

I googled felbatol for side effects. Constipation is one, which I figured. Nathan has been constipated since probably Thursday or Friday. I know that's contributing, at least I'm sure it is. I've been trying to push this magnesium mix I normally only give him at night. I'm thinking another side effect might be the way things taste because he's having no part of that drink and he used to drink it just fine. I need to find something to get his bowels moving though, it's going to get painful soon. Poor baby.

I'm upset, but not as devastated as I thought I would be. I kind of felt it coming. And, my boss said something to me that made a lot of sense. She said, "you've been on quite a roller coaster for a while. You've certainly felt and experienced the lows. You need to enjoy this high. And, if it goes bad again, we'll be here to help you through it".

I have thoroughly enjoyed this week. I have no intention of giving up this fight now - now that we've gained some ground.