Looking back, looking forward.

Rereading this, as well as the other posts from that time period, makes my heart race. So glad we have come so far. Looking at the pictures, when all of that was going on, makes me sad. But also feel so very thankful for where we are at and how healthy he is now! I've been known to smile with tears.

A half a year of freedom!

Atty's been seizure free since May 26th...That's 6 months! Amazing! I can tell you one thing, on May 26th 2011 we are going to party!!! Here's to another six month of being seizure free!

On another note, Halloween is right around the corner...a candy nightmare...a {Modified Atkins for Seizures} kid's worst nightmare. I've got a plan in place, for the most part. It includes us staying in and hosting an awesome Harvest party. Wish me luck! :) I hope to have lots of good ideas and tips to write about soon enough.

I also came up with a great pancake recipe that Atty loves, plus fish sticks {that everyone but Atty loves} and chicken fingers {another favorite of everyone but Atty so far} using Almond flour. Atty's still pretty stuck on hot dogs, turkey sausage and cashew butter. I'm think he will warm up to them eventually though. Next I'm tackling bread by modifying a recipe using almond flour to suit his diet. I hope it works... Oh and crackers, there's a recipe for crackers that I hope will work with a few little changes.

A glimpse

This is a video of Atty before his magic diet...during his various medications...struggling for normality. Sorry it's sort of a long video, I was trying to get one of the drop attacks on that day. They had just started and they were terrifying and I wanted his doctors to clearly see what was going on. This by far was a mild day, I don't have a lot of video of the harder days. Those days are a blur. Doctors appointments are so short that I think it's a good idea to tape your concerns if you can. It was a valuable thing for me because he had so many different kinds of seizures at that time. I could talk about them but unless he had one in the office they didn't really know clearly what I was talking about. Atty had a great doctor who was willing to sit and watch videos in order to truly understand what was going on. When I watch this video, and the others that I have, it chokes me up. I have to fight the tears that threaten to spill. To see him fighting so hard. How brave. In almost every video he smiles at me no matter how bad it is.

I am so thankful for how far he has come and he continues to make grand advances as the days march on. With out his Modified Atkins for seizures diet I feel certain I would still be looking at the same little boy in this video. Or worse. The effects of that would have been devastating to him and our family. Four months of none stop seizures was more then enough...It sounds like a short period of time now, but it felt never ending then.

a BIG step ahead...

For the last few days Atty has had only a few really mild seizures. Not even the full body kind, just really short absence seizures and some stumbling. This morning after he woke up I went to put on his helmet and he resisted. I thought about it for a moment and then decided that I didn't want a power struggle. I need the helmet to be a good thing for the times he really does need it. So I said okay and took a deep breath. I thought back on how much he was falling before the helmet when we had to wait about a month to get it (that was so frustrating!) and how little he is falling now. Then I bravely faced the day (after calling my husband to tell him how nervous I was).

I can tell that he really likes the feeling of being helmet free. We had a couple of hot days and by the end of the day his head would be all sweaty. I would take his helmet off before bed and he would want me to rub his head and scritch (scritch being lighter then a scratch for anyone who's wondering, ha, ha) it a little because I think it would get all itchy. Anyways I am loving seeing his beautiful red hair again. That is definitely one of the things I was missing the most, I absolutely LOVE the color of his hair.

Gorgeous, shiny, brilliant, fiery hair.

This picture gets me all emotional. Because I've been waiting a while now to see the boys all playing together again...just like before. So far today I haven't noticed a single seizure!! I can hardly believe that we tried 6 different medicines and didn't get any relief...until we tried a diet. Wow.

{just rambling}

It's interesting how the dynamics have shifted around here. Spike, my youngest son, has always wanted to be in the same playing field as the big boys. Always striving to be equal to his big brother. Who is 15 months older then him. Spike and Atty are only four months apart, almost twins. Atty has always been bigger is stature then Spike and easily looks older then Spike by more then the mere four months. Spike has always been the 'little brother' the 'baby' of the family. That is until Strawberry came around of course. Even so he's still my littlest boy. Atty easily filled in the slot of middle child. I have noticed though that now ever since Atty's health issues Ira has switched and is now trying to be at the level of Bubu 'babying' his 'little' brother Atty. They cheer Atty's every little accomplishment together. They pick up the things Atty drops. They comfort him. They've been teaching him how to walk, and run and talk again. They protect him, and watch over him together like two big brothers. Spike took this on eagerly. But it snuck up on me. I watched him today helping to feed Atty and it struck me. They both treat Atty like he's the baby of the family now. Which is sweet but not all together helpful for Atty. He needs to start doing some stuff on his own again as he gets more capable but his brothers are always stepping in and doing it for him. I think Spike will probably always seem like the older one now in every ones eyes. He has in a lot of ways always seemed like an old soul and I know he likes to feel older so I don't think he will give up this new position if he doesn't have to. Atty's never been one to fight for much of anything, he's super easy going about a lot of stuff. It will be interesting to see where this shift takes us and how the brothers will adjust together. So far as I've said Bubu and Spike are pairing up. So Atty and Strawberry are spending a lot of time together. It's not that the other two boys are leaving Atty out, Atty just chooses to hang out with Strawberry and I instead. I always though of the three boys as being together in everything but now I don't know if that's the way it's going to go.

Atty went through another rough patch, he had to be switched to sugar free for one of his medicines and had a hard time adjusting. I think he might be coming around now. One of the days last week he had a lot of hard drop attacks. He kept falling down backward, it's a really wild thing to see because he just falls straight back for the most part. Like some invisible hand yanked him back. Anyways he got a bloody mouth three times and ended up with a super fat bottom lip. I for the life of me couldn't figure out how he was getting a bloody mouth when he was falling over backward.

I also made a mistake one of the days with his meals and he ended up with extra carbs and I think that is also why he had the really bad day that was worse then the bad days he was already having. The day he ended up with all the hard drop attacks, I had screwed up the day before. It didn't dawn on me at first until I was going over his meal tracking sheet and realized my mistake.

He's also having a harder time sleeping again ever since they upped the dose on the medicine that was causing insomnia before. They had upped this medicine fairly fast when he was having a super hard time a while back and it had caused major insomnia so we went down on it. Then at our last hospital stay they took him off the most recent medicine they had put him on, the one I had told them wasn't going to work and ended up in the words of his doctor "poisoning him after all". At that time they decided to again up the medicine by a little bit that was giving him the insomnia. I just wanted him to be able to go home so I didn't argue. But now it really seems to be making it hard for him to sleep again. His doctor said we could go down on it back to the previous dose, but I'm afraid to make any more changes until we figure out the other sugar free medicine. In the mean time I am losing a horrible amount of sleep with his waking on top of the sleep I already lose with Strawberry's nursing at night.

At the moment though he is playing at my side while I type and that's always nice to see. The doctors have told me that they don't know how much brain damage he has suffered because of all of this. I am amazed by how clear he seems to be considering the days upon days of constant under lying seizures he has endured since February. He's certainly not back to base line, but we aren't out of the woods on this yet either. Yet.

Seriously

Atty's been driving me crazy with his constant mom, mom, mom's lately. Driving me almost to the brink of insanity really. He will say it over and over again then when I answer he will just stare at me. When I give up and go back to what ever it was I was doing he will start in all over again. Today I seriously had enough. He started in with the mom, mom, mom and I snapped at him. Told him to stop saying mom over and over again if he didn't have anything to tell me. He looked at me and said Momma? So now I know that he knows exactly what he is doing and he is in fact truly trying to drive me insane. I had to laugh in spite of it all.

Today(regardless of his evil plan) was a good day. He had maybe seven seizures. Maybe. If that. Awesome. Walking better, still not back to normal but at this point it could also be due to the high doses of medicine too. No diarrhea for two days, bonus. Haven't been giving him any whipping cream, just butter, maybe that has helped. He has been crying a lot at night though and saying ouchie and flailing around so I can tell some thing is still bothering him. I am so tired. Oh what I would give for a solid nights sleep. But I know that I will some day miss even this. When they are all grown up. I was thinking about how I just want to put all of this behind us but then I realized that I don't want to miss a moment of it because if I did I would be missing his childhood. This is him. This is our reality. I don't want to miss a moment. Today he covered me in kisses. He kissed me over and over again as if he'd been missing it. To feel his love for me was so heart warming. As mothers we do and do and do and so rarely do we get in return. Those little moments make it so worth while. Tomorrow we have his two week follow up with the dietitian. She said she would be able to give me some ideas for a dairy free diet. I hope it works and it is still some thing I can get him to do. Food is hard because I really can't make him eat. I can encourage, I can be firm, I can even bribe (which I HATE to do) but I truly can't make him. So far it's only been a bit of a struggle and a lot of give from me. A lot of letting go of how I would like him to eat, my idea of a balanced wholesome meal. A lot of wrapping my head around the fact that even though this is different and way off base for me, it's working for him. It's WORKING. I mean seriously, I felt that it could...but it is. I can hardly believe it. I keep finding myself wondering if it's only going to work for a little while like the medicine. I know I shouldn't think like that but there have been so many set backs during all of this that it's hard not to. Today I felt like I could breath, for the first time in a long time and it was so wonderful. I know we have a long way left to go, but I'm starting to feel that little flicker of hope that I lost there for a moment and it feels really good. I know that there are still going to be rough days and if we end up going all the way into the ketogenic diet I know it's going to be so much more intense but...seeing him today playing a tickle game with his brother and laughing...I will do anything.

Do our eyes play tricks, or can it be true?

Wow the modified Atkins diet is already making a difference! He's talking. In fact he's now driving me crazy with his constant repetitive "mom, mom, mom" All. Day. Long. Then when I answer him he just stares at me, fun. Then the whole thing starts all over again...I guess you'd have to be here to understand the sheer annoyance of it all, but I wouldn't wish it on anyone else. To be annoyed by him again, ahhhhh absolute bliss. ;) He's walking around too! Of course now that means he's falling more because he's still having drop seizures, but he looks so happy with his re found freedom. He's playing a little bit with his brothers and they are all adjusting to that. I am so pleased. I hope that we don't have to do the ketogenic diet after all, because it would be so much easier to stay with the Atkins diet. If it continues to make him better. He's far from base line and still having more then 20 seizures a day, so many that it's hard to keep an accurate count, so we have a long ways to go. I've read that drop attacks are one of the hardest to control. Progress is good though, real good. It does appear that he is having a reaction to the dairy, so I have to keep a close eye on that. It would be hard to do either of the diets with out dairy. He is suppose to eat a lot of heavy whipping cream and butter. He's not very fond of the whipping cream, but so far he loves the butter, cubes of butter, did you puke a little in your mouth? Yeah... I think one of the hardest parts of this diet is making it work for the whole family. Making meals that are not the same that still look the same. Giving Atty extra snacks and food that the other boys can't have that look like treats. Especially because in our effort to entice Atty we are calling them things like Candies and Treats and Ice cream. He hasn't been interested in food in general and he has to eat the high fat portion to make this diet work. He did eat a full avocado yesterday though, that was awesome. Every time I figure out something that he likes that works for his diet I get so excited. One of the worse parts of the diet is the sheer amount of time I spend in the kitchen now. I already spent way to much time in there, now I feel like I should just place a cot in there and camp out. Also Atty still can't feed himself very well, or doesn't want to try the food and so it takes a LONG time to finish meals. I really have to fight my irritation at that. My husband and I can hardly believe our eyes though, it's truly amazing the results we are seeing so far. I hope and pray that things continue to improve. Pray in the morning. Pray mid day. Pray at night. Wake up in the wee hours of the morning and Pray some more.

Another hospitalization

First blog entry for Atty. Well really for me, to vent about this whole thing with Atty. Because now my son has some serious health issues. That's hard to even type. If you have been following our family blog then you already know about Atty and you've been with me from the start. All the way from this post and maybe that's why you followed me over here. I wanted to have a place to chronicle everything that is going on with him and a place for me to talk about how I feel. I hope to update it regularly so that I can look back and have a clear picture of what we were going through from day to day. Living it is a blur. I hope to come out of this on the other end with a healed child. I hope he will some day be seizure free, but if that turns out to not be a possibility I want him to be as whole as possible. I want him to be happy and to feel as free as he can be. At the very least I want to have the story for Atty to read some day so he can see how brave he was and how hard we all worked to heal him and how we did it together as a family. How his mommy never gave up. Never.

This is going to read just like a journal. Some of it might not make any sense. Some will just be free flowing thought, raw emotion. It's     not going to be fancy, or well read, or eloquent. Just a tired mom writing about an emotionally overwhelming struggle to help her son. Please don't judge. Understand that I am writing it as I see it and as it works for our family. I have no preconceived notions that what works for us (or doesn't) will be the same for others. I am learning. I am going on intuitions. On research. On hope. On love. And most of all Prayers and Faith.

~

We had another week long hospital stay. After Atty's muscle biopsy, two weeks ago, he stopped walking or sitting up at all. He started throwing up numerous times a day and became dehydrated to the point that I had to bring him to the ER at Children's hospital. While there they put an IV in to pump him full of fluids and gave him anti nausea medicine. Atty's wonderful doctor at Children's tried her hardest to get them to put us on the fast track for the Ketogenic diet while we were there, but she is coming up against road blocks left and right. It looks like we still have to wait until at least the end of next month. We both feel strongly that the Ketogenic diet is what Atty needs. It's frustrating to feel so sure about what your child needs and to have been so right about so many other things and to still not be listened too. I am thankful that finally we have one doctor who is ready to listen to me. But she can only get so far. She has seen that I am being ignored. She has seen that I took my child in when he was only 18 months old already worried about possible epilepsy, NF1 and Mitochondrial disease. She was blown away by this. There wasn't enough evidence at the time so all they did was send him in for a sleep study and I left feeling like maybe I was jumping to conclusions. She has seen as every medicine has failed just like I knew it would. Atty processes things differently and I just knew it would be the same for the medicine. I can't tell you how I knew, I just did. I learned early on that he didn't tolerate certain foods well and removed those from his diet. So when I started reading about the Ketogenic diet it seemed to me that this was what Atty needed. Seems like it's all tied in together. I think his body will respond to it. I brought it up to her and she agrees. But there is a waiting list to start the diet and Children's hospital is the only hospital in this area that offers it. Mean while he is getting worse and worse. Two weeks before his muscle biopsy I took Atty into the clinic because he was getting worse again and they ended up telling me I should try another medicine (on top of the three he was already taking). After a long discussion I told them I would try it if that is what they were suggesting but that I knew it wasn't going to work and wasn't willing to try it for more then one month if it didn't help. Well sure enough they think that the fourth medicine was part of the reason for all the vomiting and at the very least it wasn't helping at all so they took him off of it at our last hospitalization. I am getting frustrated with knowing what will help my child and what won't and not being listened to. Beyond frustrated. I at least want to try it my way, as in doing the diet, and if it doesn't work it's better then all this medicine that isn't working and has so many horrible side effects. He will still be on the medicine he is on while starting the diet. If the diet does work, and you have to give it at least three months, then they will slowly go down on two of his meds, but I think he will probably stay on the Lamictal. For some time anyways. Some kids can get off all meds on the diet, some can't. I'm not sure if Atty would be able to or not. But I would love for him to be medicine free and seizure free if he could. That would be amazing and it makes it worth all the stress that I know the diet is going to bring, at least at first. It's not easy, I know that. In fact I'm scared, but so ready to try it. So very ready. So that's how things stand now. We are home, he's still not walking or even sitting up really. He's barely eating, and it's a constant struggle to get him to drink enough. I am hoping he won't get worse then this before we get a chance to start the diet because he needs to be as healthy as possible for that. I am meeting with a dietitian on Tuesday and I've been told she might put him on a modified Atkins diet for now. That's also been show to really help some kids. I don't think it will be enough for Atty, but I have a feeling it will help...I hope.