My Goblins

I let the kids pick out their own costumes and we ended up with a vampire and a witch. Anna just had to have make-up like her sister so she ended up being quite a pale witch. Kenneth did Carly's make-up and I think he did an awesome job. Have I mentioned before how much I love that man? They went with Kenneth to the school carnival before I got home from work so they were already sugared up and looking rough before we headed to the Halloween Party at some friends' house. The kids had a blast at the party and we kept them up probably way too late. We didn't get home until a little before midnight and I do not think Carly has ever been up that late in her 6 years on this earth. Anna, of course, is no stranger to late nights. The party ended with a haunted hay ride and Carly couldn't stop taking about the guy on the train tracks with the chainsaw. I am not a huge fan of Halloween but I can remember doing those scary things as a child and how much fun they were and I want my kids to have those memories as well.

We did manage to get up and make it to church again today. I about had a nervous breakdown during the service. The sermon was about times when we are frightened. As I was listening I just really started thinking about how frightened I really am about all that is currently happening with Anna. I try to act pretty calm and cool about it but my insides are all a muck and I would be a liar if I did not say that I am scared. I know things will be OK. It isn't that. I know that God will use all of this for his will and that he will take care of us but sometimes the journey can be so hard. It is just so hard to watch this thing go on night after night and have zero control over it. Every time I wake up to check on her or to go the bathroom or whatever I just stare at her and within no time she will be seizing. I am not fool enough to believe this is only happening when I am watching. I'm sure it is going on all night long. Gee, what a comforting thought to go to sleep to! I am not looking forward to but at the same time totally looking forward to getting Anna's vEEG and MRI over with so maybe we can make some progress. I feel very alone because there are very few people in my life who have been where I am and understand how hard it is to watch your child go through this. I have a lot of people who are very sympathetic and as much as I appreciate those people and don't think I could make it without them it just isn't the same as having someone who has already traveled this road. The sermon today was helpful though as was talking and praying with the pastor. I know we will get through this and come out on top again. Into every life a little rain must fall but I feel like we are stuck in a storm...

Another Rough Night

Anna had 3 pretty bad seizures again last night. Luckily they were all after 3 am so at least we got a little sleep. The seizures seem to be worse each time she has one. I technically should have given the Diastat but I was too afraid. I try so hard to only be Anna's mom and never her nurse but the nurse in me kicked in. The Diastat was ordered for 10 mg which is what we give adults in the ICU where I work who are seizing. I was afraid maybe they had called in the wrong dose. At 27 lbs, I was afraid to give Anna an adult dose. I spoke with Dr Hernandez this morning by way of his nurse. He said the dose is fine for her and perhaps we are undermedicating our adults. He said to hold the Neurontin again over the weekend and try again on Monday. He thinks she is just sleeping so well finally that her brain is totally uninhibited and thus seizing worse. I trust him and so I will do what he says. Dear God, please let tonight be better...

A Better Night

I kept intending to take a nap yesterday but just never could. I was a ball of nerves and just could not relax. I did manage to get the house cleaned though and did some other things I had been putting off for quite some time (like the oil change that was due 20,000 miles ago). Kenneth got home earlier than planned from his trip so we actually got to spend some time together as a family last night which was nice. He is back at work today but I am glad we are at least in close proximity again. The secretary at the fire department was just recently diagnosed with stage 3 breast cancer. She is young and otherwise healthy so we are praying for a great outcome. To support her, the fire department changed their uniform shirts to pink shirts and they all shaved their heads. I can handle the pink shirt but it may take me a bit to get used to the bald head. I support what he is doing though! Last night was a much better night for us. I actually got 5 hours of uninterrupted sleep which was so nice. I did not see any seizures last night but I also slept in the living room part of the night because Kenneth was snoring. Tonight I will give the Neurontin again and see what happens. I am nervous but will do it anyway. I have to work tomorrow so I am hoping to get some sleep. I took a nap today just in case. I also finally cleaned out my half of our bedroom closet today. Kenneth has only been asking me to please do it for about 2 years now so he will be happy. I took 3 bags of stuff to Goodwill and it felt good to get it out of my house. Carly has been sweet and I think she knows I am tired and stressed. She said in the car last night on the way home from dinner that she really needed "a piece of quiet." I was working on some laundry tonight (which is usually Kenneth's job) and she told me that I really "just need to sit down and chill. Daddy can do that." Well the kids are ready to eat so I guess I should go finish dinner. Here's to a seizure free night...

Seizure Update

Anna woke up bright eyed this morning and you couldn't even tell she had a rough night. She was all excited to go to school because her class is carving a pumpkin today. So I went ahead and took her to school. I told her teacher about last night and to call if she has any further seizures. She usually does not have them during the day so I feel fairly confident she will be OK at school and have a good day. I called the neurologist's office and they got back to me pretty quickly. Dr. Hernandez does not think it was the Neurontin but rather just a coincidence. We are to hold the Neurontin tonight and see how she does. Then we are supposed to give it on Thursday night and see how it goes. If it happens again then it is the medicine. If it does not happen again then it is all coincidence. He did call her in some Diastat though that we are to give her if she has more than 2 seizures back to back or 1 seizure that lasts longer than 2 minutes. The Diastat is Valium in a rectal gel. I have had some people ask what her seizures are like. If I were smart I would video them for the doctor. Maybe I'll think of that next time. She starts with a chewing/smacking of her mouth, then she starts to breathe kind of heavy, then her right hand starts to twitch and her eyes start to flutter up and down, and then she commences to twitching all over. He did call these "cluster" seizures. I asked if one cluster would lead to more clusters and he said it is different in each kid. We will just have to wait and see. Before I couldn't sleep because Anna wouldn't sleep. Now I am afraid to sleep because I am afraid this will happen again and I might not be awake or wake up. Will I ever sleep again? Guess we'll wait and see on that one too...

Not The One

I put Anna to bed at her usual time, about 8:00. I climbed into bed about 9:30. I couldn't sleep so I was watching t.v. That's when the first seizure started. No big deal, I can handle one seizure. But then as soon as that one ended here came another, and another, and another, and by the time it was all over she had had 6 seizures back to back. I think this is called clustering but I am unsure since I am still new to this whole seizure thing. I do not think she will be getting any more Neurontin, it is clearly not the medicine for her. I will call the neurologist first thing in the morning. She is sleeping nicely now, post-ictal I suppose. I don't think I'll be sleeping much tonight.

1380 Calories

I was feeling all alone in my exhaustion today until I read a post by Jude's mom and then by Reagan's mom. Apparently not sleeping is going around! It isn't that I wish them to not sleep but somehow it is nice to know there are others going through the same thing. If you will recall, we had about 2 years of Anna not sleeping. Looking back I am not sure how Kenneth and I survived but I guess just like with anything else you do what you have to do at the time to get through it. We tried a myriad of drugs with Anna and finally found one that worked. She has been on that medicine, Trazodone, since that time. For the most part her sleeping has been much better. Then the seizures started and the sleeping took a turn for the worse. As her Tegretol dose went up it seemed she began to sleep better again. Over the past two weeks she has been up about every hour. All. Night. Long. I can barely take it under normal circumstances but being pregnant and then not sleeping is getting the best of me. I finally called the neurologist yesterday because I really think the not sleeping may be seizure related. Her marathon EEG isn't for about 3 weeks but if we continue this pattern for another 3 weeks I may become homicidal. Kenneth is out of town this week so I am flying a solo mission and wearing out quickly. Anyway, she was started on another medicine yesterday in addition to her Trazodone and Tegretol. She is now also getting Neurontin at night. She did a little better last night so I hope it is a sign of things to come. Sunday night was the last night Kenneth was going to be home for a few nights so I took an Ambien so I could get a good night's sleep before he left. He agreed to get up with Anna that night. And boy did I sleep. Guess what else I did? I sleep walked into the kitchen and got an unopened bag of powdered sugar donuts and took them to my bed where I commenced to eating the whole bag all while sleeping. I only knew what had happened because I woke up Monday morning covered in powdered sugar, empty donut bag on the floor next to the bed, and the worst stomach ache I've had in years. I guess that will be the last ever Ambien for me. After I got over the shock I read the nutrition label to see just what I had consumed. OMG! I ate 1380 calories and 180 grams of carbs! I hope the massive diarrhea that followed that morning kept me from absorbing all the calories! On the way to take Anna to school this morning I had a semi freak out and began wondering just what I am doing having another child when I am almost already too exhausted to take care of the two I already have. Then the thought occurred that it is too late to think that. I just panic when I think what if Anna's sleeping never gets better and I am up every hour with her and then right as she falls back asleep the baby wakes up. I allowed panic to set in for only a few minutes and then I remembered that God is in control. He planned this pregnancy and this little one's life as well as my life and he will work it all out. In Christ alone I place my trust.

Amazing Grace

Carly's 1st Grade School Picture

Today was the first time we have been to church since Anna started having seizures. It isn't that we didn't need church because we needed it just as much as ever but the seizures presented a new problem. During Sunday School and church children are supposed to be with the children. It isn't that someone would freak out if Anna came to the worship service but I know I could not keep her quiet and I would be so preoccupied with keeping her quiet that I would likely get nothing out of the sermon. I know that God would honor our presence anyway but it just seemed like an impossible task. I just could not get comfortable with dropping Anna off to a a Sunday school teacher and then different volunteer each week who watches the kids during church and saying,"This is Anna. She is sweet and cute but she has seizures. Oh, and she is really difficult to understand. Good luck. See you after church." I have really wrestled with what the right thing is to do. Was it to be the volunteer most weeks and watch the kids myself? Well, then I still miss church and some Sundays I have to work. I had finally just kind of resigned myself to the fact that church just wasn't doable for us right now. Then at the visitation for my great grandmother Carly says to me,"Mom, you never take me to church anymore and I want to go to church." I turned to look out the door because I knew my mother of the year award would be delivered at any moment after that. I did some thinking and decided that we really had to get back to church because I don't want Anna's problems to become Carly's limitations. I want my children to grow up in church and knowing the Lord. So off we went today. Anna had been promoted to a new class since we last attended. I spoke to the ladies in the nursery and was able to get a pager from them and then dropped Anna off in the 2-3 year old's class. I let the teacher know that we had a pager and that if she needed us to let the nursery know and they would page us. When I explained that Anna has seizures, the teacher's eyes got as big as half dollars but she smiled and took on the responsibility. I know I drop her off at daycare eveyday but it is different. They are paid and they had a choice whether or not to accept Anna and all of her problems. We have also taught them what to do if a seizure occurs. They are all also CPR certified. At church, they are all volunteers who did not sign on to take care of my spoecial needs kid. Anyway, I left once during church to go check on Anna (more so to check on the teacher) and all was fine. I actually shed a few tears during the service because I was so happy to be back (well, and because I am pregnant) but mostly because it felt so good to be back. God had it all under control, again, just as he always does and I hope to someday learn that lesson so well that I no longer doubt. Fear is the one thing the devil really uses to deter me from the path I should be on and I have got to quit letting fear get in my way. The sermon was about when we face our greatest struggles. One of the things we discussed was forgivness. I just kept thinking about how good it feels to be free of the anger about Anna and to have been able to forgive. I feel like I am no longer in chains. I was thinking back to how I felt imprisoned by anger earlier this year and how horrible life would be if I was still living in that anger rather than bearing fruit again. My fruit buds are still immature but they are growing rather than withering away and for that I am so thankful...

P.S. I have been getting a lot of hits on this blog with people looking for "Peptamen Jr 1.5." I still have 3 unopened unexpired cases of this tube feeding that I will happily donate to anyone who needs it if you will just pay for shipping. I also have an unopened case of 500ml Zevex Infinity Bags that I will donate just for the cost of shipping. If you are interested in either one please just either email me through my profile or leave a comment. I really hate for this stuff to just expire sitting in the floor of my pantry, it is way to expensive for that!