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.

Sirens

When I am driving if an ambulance goes by with lights and sirens flashing it still chokes me up! My heart starts to race and I get a lump in my throat, my eyes moisten, I start to breath faster and my mind begins to race. I instantly flash back to the {multiple} ambulance rides Atty and I {and baby sister} went on during his seizure episodes. The feelings that I felt then come crashing over me again. Fear, confusion, frustration, that broken inside sensation. The non-stop begging and praying that was going on in my head, and frankly out loud at times as well. I can remember him clearly laying on that big gurney, showing how little he truly was. Looking so vulnerable. The eerie lighting, the sires sounding as we speed down the freeway. The paramedic attending to his needs. Talking to me to try and distract me from my obvious impending nervous break down. {Although I never did break down in front of any of them, I know I was teetering at moments, especially in the dark of the ambulance when I couldn't stop the tears from coming.} I would sit there and tell him over and over again that mommy was right there, don't be afraid, we will fix this, I love you, it's going to be okay. I just wanted him to hear my voice and know that I was right there. The fear that I felt in those moments of uncertainty still overwhelms me. Our lives when from normal {what ever that is} to absolute turmoil in the blink of an eye. It was so fast it was hard for my brain to catch up. I felt like I was having a horrid night mare so many times through that whole process.

So now we are on the other side, I know this when those feelings wash over me, and it still doesn't make them any less raw. They still hurt. But only for a moment. Then I glace into the rear view mirror and see the smiling face of a healthy happy boy and I remind myself of how far we have come. And I'm so glad that in the end I could keep those desperate promises.

bye bye curls... hope to see you again soon.

When Atty was on all of his medicine for seizures his hair started falling out. It started to look like he had a comb over. So we shaved it. For me it was a sad moment to shave off all his beautiful red hair, and I shed a tear or two. First it had been covered with the helmet when he was having all the drop attacks and then shaved. It was hard to get use to, not seeing all that red hair all the time.Then as he got healthier and healthier and got off all the medicine his hair grew back. Boy oh Boy did it grow back, beautiful, curly red hair. It became a sign of health for me, all that beautiful red hair. I let it grow, and grow, and grow.
The other night I gave my husband a really short hair cut {I've the official hair cutter in our family} and the boys decided they all wanted their hair cut like daddy. Including Atticus. My heart sank. I'm not one to care normally whether my kids have long or short hair, or even what clothes they wear, etc... I like to let them make those choices for the most part. But I'll admit Atty's long hair had so many meanings to me... I was definitely more attached to his hair then he was. It was sort of funny because my husband was trying to talk Bubu out of cutting his hair, he likes it longer, and I was trying to talk Atty out of cutting his. But in the end Bubu had some words of wisdom for us. He said "it's just hair, it will grow back". He's right of course... my wise son. My daughter also wanted a hair cut, but it's taken almost two years to get the tiny bit she has so I'll admit I gave her a fake hair cut... which made her happy, so all is well. Funny thing is Atty went last, because I tried to avoid it to the very end, and when he sat down he said "mom I don't want my hair cut like baby sister, I want it cut like Bubu". Smart little kid. :) And you know what I probably would have tried that if he hadn't called me out on it. That's what I did on the last round of hair cuts. It worked that time, but he let me know in no uncertain terms that it wasn't going to work this time. So I took a deep breath, cut his hair, shed a tear and saved some curls. And we move on, it's hair... it will grow back.


And all that matters this time is that he is healthy, short hair and all.

Pinata, pinata, pinata...

We went to a family birthday party last weekend. I was told ahead of time that there was going to be a pinata, and his auntie said that she would buy Atty some special little toys to make up for the candy he can't have. Which was very sweet... I am thankful to have such supporting family members through this whole thing. The only problem left was how to deal with  piñata time. Should we take Atty somewhere else during that part? Should he just stand and watch? Should he participate and then give the candy to auntie for a trade? Everything else I had covered, I made him his special cupcakes for cake time, and I made him his type of bread and crackers, I packed his bag full of his type of food. But I just wasn't sure what to do at pinata time... I don't want him to feel left out, the magic diet already draws attention to him and has the potential to make him feel like he's on the outside of the group. So in the end I decided that if he wanted to participate he could. It's so hard to know what the best choice is. Last year {same kids party} my husband just distracted Atty, which was easier because he was littler. At yet another pinata party last year I just didn't call him over and there was so much going on he didn't seem to notice at first or care. I don't think he really understood. Plus there were toys in that pinata with the candy and he got some of those. This year everything seems a little harder in some ways. He's just so much more aware. I talked with him about the pinata. We went over what would happen and that he could choose to participate or not. That if he did participate he could collect the candy if he wanted to and then trade it with his auntie for special toys. He let it be know that he wanted to and that he understood. I also made him his freezer candies so that he would have his own treats as well. He was pretty excited about that. Pinata time rolled around and a pit grew in my stomach. Did I make the right choice? Would this blow up in my face, would he clutch the candy screaming and crying at the top of his lungs in front of everyone? I called him over like I said I would and he stood by my side, in the end he said he didn't want to swing at the pinata and clung to my side instead. When the pinata finally broke open, everything got pretty loud and scattered as kids scrambled for falling candy... and that is when Atty fell apart. A cry from deep down inside burst forth and he was lost. It was such a heart broken cry. He was completely overwhelmed. I quickly picked him up and walked away. We found a quiet corner to hid. I will admit I also became completely overwhelmed by his sadness and tears started streaming down my face, I had to swallow hard against the sobbing that threatened to escape. I feel so frustrated and helpless some times by all of this. Not that I really want any of my kids to have candy. I wasn't upset about the candy in particular, I don't feel like any of my kids really need to eat candy. It was just that he couldn't do what everyone else was doing, it's not a choice, he simply can't. I just don't want one to feel left out while the other ones have fun. I also don't want to make all my kids feel like the odd ones out, sitting on the sidelines watching all the fun. I sat with Atty while we calmed down and then we talked about it a little. I think it just all hit him at once and became all too real for him before he had a chance to process it. One minute the kids were taking turns swinging and the next candy was everywhere and the kids were going crazy picking it up. Atty doesn't do well in commotion like that and then the added context of candy just threw it over the top. Anyways after we had calmed down and talked {I had hid my tears fairly well from Atty, didn't want to add to the situation or make him feel like I was feeling sorry of him. Feeling sorry for ourselves won't do us any good. It is what it is. Sad at times, but over all good. } I asked him if he was ready for his treats. That brightened him right up. We went and got them and then he lead me back to the quiet spot to eat them. I really liked that he knew he needed more quiet time and found it on his own. He sure is growing up. All and all I'm not sure that I would have done it any different. Except that in retrospect I probably shouldn't have talked about so many times with him before hand. I felt like I wanted him well prepared, but I think it just made it a bigger deal for him, and I know by now that that doesn't actually work well with him. It works really well for one of his brothers, but it doesn't seem to work for him. Makes it into too big of a deal or something. He is sometimes very hard to figure out. I think I'm going to have to claim the pinata back for kids who can't have candy and get one for his birthday next year... and fill it full of toys. I've also decided from now on that when ever I know there is a pinata at a party I will get little toys and trinkets for all my children and then after the party any candy they bring home I will trade them the candy for the "special prize of toys and trinkets". Because I can't really have the candy sitting around the house anyways and they can't eat it in front of Atty. Plus they really liked Atty's toys and I have a feeling all in all they feel like they are the ones that ended up on the short end of the stick. Candy... who cares. Toys last longer and are way more awesome. :)

Rambling... is there anything else I do?

Wow I am really not doing as well as I wanted to with keeping this blog updated. I wanted to record the whole experience of healing Atty better then this!


Atty is still doing so well. Although I think this second year into the diet might be harder in some ways. It's been a long time since he's had a seizure {well over a year is a long time for an kid} and so it's a lot farther from his mind. We talk about it from time to time and I made a video that we watch on occasion, but time still fades the memory. Which is good, and bad. In the first year he really listened and seemed to understand the absolute importance of following the diet exactly. Now he asks more for things he can't have or seconds on foods that he is limited on. I think also the fact that I am slowly switching over to a diet similar to the GAPS diet makes this an adjustment period for us. Because I am giving him unlimited non-starchy vegetables now and more of certain fruit {always paired with a fat}. I think the fact that I am making these changes makes him wonder what else can change. He hasn't thrown any fits yet when I tell him no on a food request, but he has sulked and or refused to eat the food he was offered in exchange.


I mentioned that I am switching him over to a diet similar to the GAPS diet. A while ago someone suggested that I read Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. I think I've mentioned this before. It took me a while to get the book as it's fairly pricey, but wow am I glad I did. Absolutely valuable. I've actually already loaned it out to quite a few more people who couldn't afford to buy it themselves, and every one who has read it has been blown away. I think it's a great read for anyone personally. Anyways I really feel that this is the diet that is the exact match for Atty. The MAS diet has done wonders, but it's focus is not on healing the gut and the health of the gut is directly related to Atty's health issues in my opinion {and the opinion of many others, including the doctor who wrote the book}. The GAPS diet has been used to heal others with seizure disorders but it's not as well know as the Ketogenic diet or the MAS diet. Which mean it's hardly talked about at all. I think this is a real shame. I'm not totally switching Atty over right away, it's going to be a slow transition. The GAPS diet is not a whole lot different then the MAS diet. I think the main difference for us is in the MAS diet you count carbs where as in the GAPS diet you focus on certain types of foods and food that heal the gut and build good bacteria in the intestines. They both exclude a lot of the same foods. There are some foods on the GAPS diet I wouldn't introduce yet {possibly in another year or two} that being the types of dairy products that are allowed like home made yogurt, certain beans and grain {a select few} and also honey. That's why I say a diet similar to the GAPS diet. Atty for at least the next year will still not have any dairy, no grain of any kind, no dried beans/peas, and no other sweeteners except stevia. The diet is a little to complicated I think to go into in great detail here, but it basically works in stages, you slowly introduce different foods as the gut begins to heal. Some times after the gut has healed up some people can tolerate food they were not able to tolerate before with out having any of the symptoms they were suffering from coming back. I'm not sure what all Atty will eventually be able to eat but I don't think he will ever be able to eat with out some restrictions.


This whole experience, while it has been eye opening and so exciting seeing him get better, it has also been very wearing on me. I have been fighting this drag me down feeling more and more lately. I just feel like being super lazy. Me saying something like that is like me sharing a deep dark secret. I'm embarrassed. Seriously. I am anything but lazy, in fact my husband wishes I would mellow out sometimes. I take multitasking to a whole new level. I can hardly sit still for a minute {unless I have a really good book, but even then I read in spurts interrupted by wild cleaning}. I generally can't even sit still for a movie. I won't sit still for a movie if the room is a mess or there is laundry to fold. So me feeling lazy, and I mean really really don't want to clean or cook another thing lazy, is odd. It's very out of character. It has me worried. I have to talk myself into picking up lately, into cooking and cleaning. I find myself fantasizing about curling up in bed for days. Or getting in my van and just driving, anywhere far away, alone. Of course I won't do any thing like that but the fact that I am even thinking like this is bothering me. Some times I wish I could just be a lazy mom and let my house go and just relax for a bit. But I can't and I won't and so that is that. I keep on going. That's what I do. But right now I just have to say... I don't want to.


Just admitting this on here makes me not want to post it, but I started this blog to be real about what was really going on with Atty and the whole situation and I'm a big part of it so I guess I have to be real about that too right? Sigh. Me and my ridiculous perfectionism that I can never live up to, will I ever let it go? Okay I'm done asking questions that you totally don't have to answer.

Now back to my super busy crazy life that I can not escape from {and don't actually want too}.

PARTY!!!

And they all said NO MORE SEIZURES! :) Had Atty's party this weekend and it was awesome. So nice to celebrate with friends and family this amazing milestone. One whole year down, and Saturday also happened to be his last day on medicine! The power of diet and diet alone!!!

Atty's face just glowed with happiness the whole time. It was hard to get any un-blurry pictures of him because he was all over the place visiting and celebrating. He loved sharing his food with everyone. I spent two days making different foods for sampling, all out of almond flour. On the menu was:

Almond flour bread and cashew butter sandwiches

Herb crackers {using herbs straight out of my garden!}

Sesame crackers

Pecan shortbread cookies

muffins

I also had to make him biscuits in the middle of baking, so that he would have something to eat before the party...

Also on the menu:

Chicken strips made with almond flour coating

His type of hot dogs, cut into strips and boiled so they curl {we call them worms, ha ha!}

Macadamia nut "humus" for dipping

Cashew/Tahini/Olive oil dipping sauce or salad dressing

Mustard for dipping

A non-starchy veggies tray

A fruit tray with his types of fruit {we did have to put this on a separate table to make sure he didn't eat more then he was suppose to.}

Baby spinach greens

Macadamia nuts

A big batch of camomile tea over ice sweetened with stevia

I also made his guacamole and his heart shaped freezer treats but I forgot to put those out. Oh well. Everyone enjoyed the food, which was nice. I'll admit my first attempts at his food weren't the best, so it was really nice seeing people actually enjoying eating his food and declaring it yummy. :) Atty loved that it was a party that he could actually go up to the table and eat what ever he wanted. What a relief.

After food and conversation we moved on to trophies. I had trophies made for each of the kids with a special engraving on each one. I wanted them all to understand that I noticed and appreciated their hard work. This diet had been hard work for everyone, it involves the whole family and I am just proud beyond words of my kids. I can't even think about it with out tearing up. In fact I was so emotional that I couldn't talk and had to have my dearest friend give out the trophies at first while I tried to compose myself. By the time it was Atty's turn I had a better handle on myself and was able to speak and give him his trophy. "For your bravery and dedication against all odds. " It was a really special moment.

We all clapped and cheered for each and every one of them. They all felt very proud of themselves, as they should.

Then my mom surprised my hubby and I with trophies as well. It was so sweet and thoughtful of her.

Go Team Rivers!


I got all emotional all over again, and made a super ugly cry face, trying to express to the people there how much their love and support has meant to me. I had tried to warn everyone ahead of time that there were going to be tears... I'm pretty sure just about everyone there shed a tear or two {or more} and we all hugged. It was food for my soul.

Showing off their trophies, or in Lala's case... eating it! Yummy. Her trophy was for brightening up the dark days and bringing a smile to her brothers face. She was sometimes the only one who could get him to smile in the hospital.

Atty's posing for his trophy picture.

Ira showing his hard earned trophy for his excellent team spirit.

The proud big brother showing his hard earned trophy as well, for being an outstanding team player. :)

All of their trophies said, Go Team Rivers! Which is something we say a lot because it helps the kids to work together. We even have an all hands in cheer we do, because were silly like that.

After the trophies we had almond flour cupcakes. There were twelve candles to celebrate the twelve months seizure free and we all shouted "No More Seizures" before blowing out the candles together. Half of the cupcakes I frosted with a cashew butter/coconut oil/stevia mix that is super yummy and the other half I frosted with Nutella {for the people with out allergies}. Let me just say that Nutella frosting is amazing. The cupcakes where strawberry flavored using his flavored powdered stevia drink mix and then I added a slice of strawberry on top. Not a single cupcake was wasted. Major success!

Atty enjoying his muffin. Quite a few of the people at the party are switching to diets similar {but not a strict or as high in fat} as Atty's diet and were really interested in all the food. They loved the almond flour baked goods and now want to order almond flour for themselves. They all felt it was much yummier then the gluten free alternative they use. Exciting to be part of a better health movement! The GAPS diet is what I want to switch Atty to and that is what most of the people there were interested in. I ordered the book 'Gut and Psychology Syndrome' by Dr. Natasha Campbell-McBride a while back and already have a waiting list of people who want to read it. I think it's an eye opening must read for everyone to understand the body better. Diet affects so many things that many of us have never even connected before.

Atticus, you are my Champion and I am so proud of you! One more year and you earned yourself a lizard! {Something I promised at the beginning of the diet...} It might end up being a bird instead though, as you are now really into birds, I guess we will just wait and see. Either way you are half way there!!!

The power of candy

So.... all my hard work was almost challenge in a split second.

I had to take our van in for some work and the place we went happens to be in our mall. So during the hour and half wait I took the kids to the play area in the mall. My nightmare as I am not a mall person AT ALL. The kids were having a blast though, running around, playing on the toys, and with the other kids. Toward the end of our time there Atty and his brother were talking to some other kids and their parent. I was watching them and helping their baby sister on a toy. I look up at them, then down to Lala {nickname} and then back up at them. At that moment I realize that Spike {nickname} is putting something in his mouth and Atty is about to! I said "Atticus Stop" sternly and loudly so that everyone was looking at me. It was a bit embarrassing but I need him to understand the importance of what I was saying. I called him over and in his hand was a candy! Candy, the thing I have been strictly avoiding because of his diet. The last place on earth I thought he would get his hands on something restricted was here. Really it hadn't even crossed my mind, and I'm normally on high alert for this sort of thing. You are not even suppose to have food or drink in the play area! All the get togethers we have gone to where I have followed him like a shadow making sure to tell people about his diet and enlisting others to help me keep an eye on him. All the get togethers we have skipped to keep the stress of the diet down. I was in shock. I quickly took the candy away {It was just a little thing, but after coming so far on this diet I refuse to risk it.} and told him why. Briefly and to the point, then I let him know that he could have one of his treats when we got home. He accepted this and didn't throw a fit or anything. I would have understood if he had, because he hasn't been handed candy in a year and he is a kid after all! Candy is candy, and we all love it and one point or another. I was so proud of him. Because I was in shock and because I'm too freaking polite I didn't say a thing to the man who gave them candy. He didn't speak a lot of English anyways so trying to explain Atty's diet and all wouldn't have worked out very well. He seemed really sorry and said so, but I just could not believe that he gave anything to my kids! I sort of thought it was an unspoken rule that you don't feed other people's kids. The part that really upset me the most frankly was that they even took candy from a stranger in the first place. I know I was there so they felt comfortable, but we have had so many talks about this sort of thing. To see how easily it is all forgotten is disturbing! We had a talk about it after leaving and will be discussing it daily for a while to really sink some lessons about strangers into their little heads. I'm not one for scaring my children about strangers, but I do believe in teaching them about stranger safety. Which is why I was so upset at how easily they accepted something from a stranger. Candy, it is powerful and that power is scary!

Last One!

Atty had a follow up appointment at Children's today and it went fantastic! We are now going down slowly on Atty's last medicine and if all goes well he will be medicine free by mid June!!! He's not had a single reaction going off any of the other medicines so far and I pray that it will be the same for this last one. I'm so nervous. In a good way. I'm excited but a little scared, just because everything is going so well now, and the unknown is well, just scary. But I feel confident the it's the diet that is the main factor for Atty. That has been proven with out a shadow of a doubt, even for the doubters. There are kids who can go medicine free because of the diet, and I just hope and pray that Atty is one of them. It's a big leap of faith. BIG. We are ahead of schedule for going down on the last medicine. At first his main doctor said he would want him on medicine for two years, but he has amazed every one so much at Children's that this time his doctor felt confident enough to start the weaning process.



His doctor said today that Atty should be the poster child there, his story is so amazing {except that would give them all the glory and I don't think that's really very fair, after all we went through there with them... it was I after all that suggested the diet to them}. To see him before and then now... wow. He was unable to speak and practically unreachable for a moment there. Now he's talking non-stop. Some times it about takes my breath away. I'm working on a video to show at his big party next month. Celebrating being seizure free for one year on his MAS diet. It starts from the beginning and is full of photos, videos, music and stories and every time I watch it or edit it I start to tear up. He has been through so much, and has come so far in this last year. Once I get it done and shown to close friends and family I'm going to try and figure out how to post it here, or link to it some how. It's sort of long though... going on over 1/2 an hour at this point... there's a lot to tell! :)



I mentioned to the dietitian that I had lots more recipes to share and that I really should write a book {I've been mulling this over, but I'm not much of a writer so the idea seem a little out of reach for me...} and she said if I wrote it people would buy it. There are books on the Ketogenic diet but nothing on the MAS diet that I'm aware of. It would be great to help other parents out there starting there kid on the diet, or even just to get the word out there about the diet so that parents can learn about other possible options. I want to share the joy I feel with some other desperate parent. I just want the Modified Atkins for Seizures diet to be common language for people, I want to say it casually to someone and have them say "Oh yeah I heard about that from my neighbor" or even better "Oh yeah I read your book on that" Ha ha!!

A first...

This past Sunday you went to Sunday school and stayed in the big kid room the whole time! This may not seem like a big deal to some but for you this was a major event. We've only tried this one other time since your seizures stopped and you only lasted about ten minutes. Because you also have sensory issues, little things can set you off (at least they seem little to others, and have been hard for me to understand at times). You generally have a really hard time with with transitions and commotion. When you were little we stopped going to church because you wouldn't stay in the baby or toddler rooms the numerous times we tried and you would absolutely melt down during the singing/music portion in church with us (Nor would you sit still for the sermon). It was a night mare. You have come so far and matured so much it shocks me some times. I think I had a harder time being separated from you then you did. Not that you would have know because I kept my game face on (as we call it in our home). I had a hard time focusing, I was so worried and was checking my phone for the expected text the whole time. I had a hard time keeping my mind from wandering into fear. At the very end of the sermon when the music starts they always bring the kids over to sit with their parents. I was worried that the music would set you off so I waited by the door to hold you, sure that I would have to. You walked through the doors with a big smile on your face and put your little hand in mind. You followed me to where daddy was sitting with sister and sat on my lap listening to the music, and even dancing! I'll admit tears were streaming down my face. I never thought I'd see the day. Loud music has always been a trigger for you. But not this time. I was totally overwhelmed. Since your seizures started we have never left you with any one but very close friends and family and always at our house. You have never spent that amount of time away from me in that sort of situation before. Of course you had your wonderful, protective heroes {brothers} with you. A team for ever, brother to the end. The fact that you guys are such a team is what helped in this situation because you hated having to stay home with daddy while your brothers when to Sunday school... we did this a few times in a row and then you were ready to try your hardest to stay in the big kid room, just so that you could be with your brothers. That was the key, the team building has paid off. :) I hope that you have now been able to see how fun it can be and how proud you made your parents. My fingers are crossed that next Sunday will go just as well.

It's hard letting go, it's hard trusting that everything will be okay even though I'm not there watching over every little thing. It's hard trusting the people caring for you will truly understand how important it is for you to stay on your diet. How you absolutely can not get your hands on any food not allowed on your diet. Seizure triggers. We have worked so hard with this diet and getting him seizure free that it would be heart breaking for him to have to suffer another seizure just because someone wasn't watching close enough. A big part of me doesn't like putting that burden on another person. I try to make it as simple as possible, bringing his own snacks, explaining his diet and the importance of it in simple and to the point form, giving everyone who watches him his seizure care plan from the hospital, and generally planning ahead for success. I am that mom with Atty, the seemingly over protective, pestering, have to do AB and C with my kid sort of mom. But I don't care and I won't make apologies. Although it does embarrass me some times I will admit. We normally don't like to cause a fuss as a family, we are quiet and try to be easy going. But it is what it is. It has almost been a year of you being seizure free, on the 26th of May was your first seizure free day last year. This is possible because of your diet. Your magic diet.

I am realizing that I am steadily changing my mind set. The fear is subsiding. We went to the park the other day and I didn't think about his seizures even once! I didn't realize this until I looked at the pictures I took of him climbing all over the place, up ladders, across bridges, down big tunnel slides. He was playing with a freedom he hasn't experience since his seizures started. I was not hovering, or telling him he couldn't climb that high or go on that certain toy. He wasn't wearing a helmet, or holding a hand. He was truly free to play at will with his brothers and it was a beautiful thing. I was also a beautiful thing that I did not worry and stress the whole time. I have slowly been letting go little by little and trusting in his magic diet and the fact that he has not had a single seizure in 10 months! Even with being weaned down to only one seizure medicine. {Hopefully we will soon be going down on that one as well...} From trying 6 different medicines and being on three at once at one time, to being on one medicine and a magic diet. It's been quite a ride!

It's a Happy {Birthday} Day!

It's Atty's 4th birthday! I posted about it here. :)

Happy birthday love!!

More updates to come, and I might post a video of how far we have come after I am done working on it. In May he will be on the diet for a year and I am planning a big celebration, so the video is for that.

I have come up with a few more recipes as well that I want to post, in hopes that someone who needs them will stumble upon my blog. :) Today I will be making special birthday pancakes from almond flour, as well as a cake that he can have. Something I would not be able to do with out that blessed almond flour, and of course stevia to sweeten it up and make it yummy!

I think I will do a tips post as well about things we have done to make his diet successful.

I always mean to post more on this blog, keep it updated and record this journey better, but I get so busy and then it just doesn't happen. Got to work on that! That being said, I've got lots to do including celebrating my sons birth, his life and how far he has come!!! It's going to be a great day...

Quick update

Went to another doctor appointment because Atty had been complaining that his feet hurt and was walking funny but we couldn't figure out why. Well by the time we got into Children's hospital to see his doctor, weeks later, he wasn't doing it anymore. So we figured nothing out, except that it might be because we recently went up on his Lcarnitin because of high anmonia levels. There is a type of nerve pain that can be helped by Lcarnitin and so it is interesting that he stopped complaining about his feet around the same time that we went up on that medicine. Hummmmm....I guess now we will wait and see if he mentions it or starts walking funny again.

Another random note, I messed up during the holidays. The weekend before Christmas we went to my mom's house for a get together and I realized {to late} that I had left ALL of Atty's food on the table by the door at our house. My stomach just sank. I left all his meds too, which wasn't too big of a deal because he didn't need them as we weren't staying over or anything but I do like to have his emergency meds just in case. Even though we've never had to use them, and Lord willing, never will. Anyways he got pretty sad, and then started freaking out because I'd made a big deal about the special cookies I was making just for him and then had none to give him. I wanted to cry. But I stood my ground on the no throwing fits over food thing and sent him into the other room until he was done. He settled down soon and then we had a talk and I told him how very sorry I was and how sad it made me feel that I messed up and that he could have what ever special food he wanted as soon as we got home. There was a guest at my mom's who didn't really understand the big deal and it was super hard not to respond to that in a rude way. We found a few random things to offer him, but he didn't eat much. He did well the rest of time though and when we got home I was good to my word even though it was super late I let him stay up and eat some cookies and some of his peanut butter.
That whole weekend was busy but went smoothly and no more food was forgotten, thank goodness!

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.

The reality

I'm feeling a little overwhelmed with the medicine changes. They are good don't get me wrong...but keeping track of all the changes and remembering his medicine, twice a day, every day is starting to prove to be frustrating to say the least. I was suppose to go up on one of his meds last week, in order to start going down on another and I forgot. So that throws the whole schedule off and just makes it last longer. I have it all written done in his calendar and everything it's just a matter of slowing down and remembering to check that calendar. I was doing really well when all this started, but life takes over and I start slipping up on the regular stuff. I've never been good at remembering these sorts of things, I can't even remember to take a multi vitamin on a regular basis. So the medicine thing freaks me out, because it's like a thousand times more important then a multi vitamin! {I can't seem to remember to give him his multi vit. on a regular basis either, ack!} Also to make matter worse, at some point last week a dose was missed. I don't remember doing it and neither does my husband, but it appeared that I hadn't given him his medicine in the morning when my husband went to give it to him at night. I was out with a friend {Something I've been trying to do once a week, need some me time.} and he called her cell to ask me about it. My friend insisted she heard me talking about giving him his medicine that morning when we were on the phone, but it must have been the morning before. I couldn't enjoy the rest of my time out, I was quite literally sick to my stomach with fear and guilt. I cut the outing short and came home and worried the whole rest of the night and into the next day. Worried and waited to see if he would have any break through seizures...he didn't thank goodness! But every little twitch, stumble or weird look got my heart racing. I gave him extra oil, and focused on his diet making sure everything was extremely well balanced. I'm always careful with his diet, but not normally obsessive any more. I was obsessive for days, and stressed out, but slowly I've relaxed again. Not on the medicine, just in general. I really hope he doesn't have to take medicine the rest of his life. It's so stressful. Break through seizures are scary enough, but if he were to abruptly stop his meds he could go into status epilepticus, and that word makes me break out in sweats. It would make it all the harder to let go when it comes time for him to live on his own. But I'm not going to think about that right now...

I still feel so guilty about missing a dose. So irresponsible. I'm always multi tasking to the extreme and it's times like this that I realize that's not always a good thing. It makes me so distracted. It seems I'm always trying to prove how efficient I can be, I've got it, I'm on top of it, I rule. But then I don't. That hurts. It hurts me, and as in this case, it can hurt others. I'm not sure what to do about it though. There is just always so much to do, and it's just regular everyday stuff for the most part. When you have four kids, and run a daycare and take care of most of the household responsibilities and errand running it just adds up. {My husband works a lot, he's not lazy just rarely here.} Not enough hours in the day. So I rush around, doing to many things at once, and all the while thinking about what I need to do next. It's inevitable that I will forget things at times. Which I do, and it always seems to be the really important stuff. Like a credit card bill that was due yesterday, or an appointment that had been scheduled a month in advance, or medicine. Why can't it just be something like the dust bunnies in the corner?

Drum roll please

...and now, one down...two to go.


Last day for the zonisamide, No More from here on out!!! He did not have a single reaction...no noticeable change for the worse what so ever...how awesome is that! I just knew that one was pointless. Now we are going to wait about a month and then start going down on the VPA. I'm a little more nervous about this one, but of the last two meds I want him off this one as soon as possible. Lots of nasty side effects with this one and it's making his hair fall out and loose it's beautiful dark red color. So sad. The doctor said that it isn't permanent though, that his hair will grow back again as soon as he gets off the VPA, she doesn't know about the color though. She's never heard of the hair getting lighter, but it's obvious that it has when you look at old pictures and then now. I was even finding white looking hair on his head before we shaved it. We shaved it because he was starting to look like he had a comb over, poor boy. I miss all his beautiful red hair. :(


I ordered The Gluten-Free Almond Flour Cookbook by Elana Amsterdam and I am waiting patiently for it to arrive. Super excited to see what recipes I can adapt from there to make new things for Atty using the almond flour. I tasted a cake that someone made from this cookbook and it was super delicious, if they hadn't used maple syrup for sweetener Atty would have been able to eat it {minus the frosting}! I'm pretty sure I will be able to just use stevia for a sweetener and hopefully have success with many of the recipes. I also found Almond flour online and although it is a big investment {pricey stuff} in the long run it saves money {price per pound goes down} so I contemplating ordering larger quantities. I go through the little bags from the store so fast!

We've decided not to go Trick or Treating this year. I know it's a little early to talk about this, but it is just around the corner already! I don't really like the whole thing anyways and the kids have only gone two or three times, so they are not really to upset about not going. Bubu {my oldest} questioned the idea a little bit, but I reassured him that we would have fun and talked to him a little bit about why it would be hard for Atty and he accepted that. We are going to have a Harvest Party instead. Some close friends are coming over and we've got all sorts of things brewing, idea wise. I've got to come up with some great games and snacks and treats that the whole group will love. I've got to decided if I will make separate things for the rest of the kids to enjoy and then special things for Atty or all the same stuff. It's really hard to make all the same stuff though...Food that Atty can have doesn't always mix well into the over all party food. If I make separate stuff I have to be careful so that Atty won't feel left out. I usually try to make something for Atty that looks close to what the other people are eating so it takes a lot of planning ahead of time. Maybe I should come up with a regular menu and then branch off from there. Apparently I'm brainstorming as I type. We are keeping it a dress up party so that all the kids can wear their costumes {gotta have my pictures!} and I think the kids will have fun passing treats out this year. I've always been the house that passes out items like stickers/crayons/bubbles instead of candy {Yes I am that house} so there won't be any stress for us there. Just having candy in the same room as Atty makes me break out in a cold sweat. It's just too tempting...

Atty has a big multiple appointments at Children's day coming up on the 28th. Hope all goes well. I think we have to do a blood draw again, dreading that. Also have to take at least the baby girl with me if not all of the kids so that will be fun {heavy on the sarcasm}. It sure is nice to walk through the doors with my little red head walking beside me, no helmet, no stroller, not stopping to wipe drool, no grabbing him by the shoulders to steady him...just walking, hand in hand. :)

He amazes me

We made it through two more birthdays, easy breezy! His brothers and I make a great team. I love how his brothers are so willing to help with Atty's diet. When ever it has been time to sit down and eat at the parties he has a brother on each side to make sure he doesn't grab any other food or get food handed to him from someone else. His brothers tell other people about Atty's magic diet and are always asking me if certain foods are okay or not for him to eat. I talked to a lady at the last party that makes cakes and treats with almond flour and I'm going to get in contact with her to see if I can get some more ideas for Atty. We have another birthday party this coming weekend and this one has a pinata again, so I've got a bucket of little toys ready to take with. Last time he didn't notice the pinata but I'm afraid I can't count on that again. Atty is a weird combination of oblivious and super observant. It all depends on what's caught his eye.

We are almost done with one of his medicines and so far so good...which is awesome! He will be down to two medicines with in a couple weeks. Then after a short adjustment period {from going off this one} I'm going to bring up going slowly off of the VPA also {it's thinning his hair and doing Lord knows what else}. I would LOVE for him to be on only one medicine. For now. Eventually my hope for him is NO medicine, but we will have to wait and see. I feel that with him we have to go really slow with getting off the medicines. Some day though I hope to be able to say he is medicine free!! Some day. For now it is enough to say he is SEIZURE FREE!!! Wow that feels good.

I wish I had a better way to share ideas with other people who have been or are in the same sort of situation as us. Recipe ideas and such. The diet can seem so overwhelming and I guess a lot of people give up on it because of that. I would love to be able to encourage other families to stick with it because it's so worth it in the bigger picture. So many people with seizures or a kid with seizures still don't know about the diet options...too many. I don't know if I even have the right words to describe how much that bothers me. To see first hand how beneficial it's been for my child and to know that there are many other children out there suffering that could possibly benefit from this as well, really frustrates me. I want to reach out to them. I think about what life would be like right now for my child if we hadn't stumbled across the diet on our own. I don't know how I would have hung in there for months upon months of non-stop seizures...watching my child suffer. Taking him in for brain surgery was our last option and it wouldn't not have left him with the quality of life he has right now, it most likely wouldn't have even stopped his seizures all the way. So yeah, four months was more then long enough. Now it's been four months with out, Wow...I just came to that realization. Four months. It all seems so distant now. Thank goodness.

We went on a walk at Blackberry park as we call it. One of the boys favorite places to go and it has a great walking trail. I was afraid to go there now that the blackberries are ripe for the picking because the kids LOVE to pick and eat the blackberries right then and there but Atty can only have 5 and it's hard to balance that out. I didn't want him to get upset that he couldn't have more and I didn't want to have to limit his brothers because I'm constantly having to restrict things for them that I wouldn't normally do. In order to try and balance things out and make it fair. I don't want them to resent Atty though because of all the limitations it sets for them as well. Anyways all went well and there were no melt downs. I distracted them at first so they wouldn't think about the blackberries and then when that wasn't working I let the other two pick away and told Atty I would pick them for him and how many he could have. I'm always telling him to enjoy the things he can only have a little of, to smell them and eat them slowly. So right away he was carrying the first one around and telling me he was smelling it, so cute! Then he ate it and said "mom I enjoyed it" Ha, ha! I slowly gave him his five berries to spread it out and make it past the blackberries and it worked. Another challenge meet. :) Atty really is such a sweet and understanding child for the most part. He just seems to accept how things need to be and trust that I guess. I know at some point there is bound to be a melt down over the diet but so far I'm thankful that it has gone so well. And since I know it works any struggles we do have will be worth it. Meaning I'll deal with the little stuff like melt downs because the pay off is so very amazing!

He did have to go in for a major blood draw, first thing in the morning, poor thing. He was being so sweet and brave and adorable...which makes it all even more sad when they stick him. The look on his face as it crumples and he cries and says owie is so hard to take. I refuse to let any one else pin him down and I always get attitude on that at first but afterward I always end up getting thanked for my help so go figure. I just gave him lots of love and words of encouragement as they blew up the vain in his hand and had to move onto his other arm. He's a hard draw. That's an understatement in fact. Four big vials and three little vials later and he was finally done. It took a moment to calm his wild cries and tears this time but as soon as he understood we were in fact actually done he settled down. Then I pulled out a shiny little stuffed lizard for him and his bravery and all was good in his world. He even said thank you and good bye to the girls and stole their cold grumpy hearts on the way out. Pretty cute. I love my little redhead. I'm so proud of him and how he has been dealing with all the complications that have come swarming into his life. He continues to amaze me.

Keeping it on the bright side

So my last post was a little down, but I'm feeling much better now.


I've not gone to see anyone about my anxiety, mostly because it's gone way down. I cut out coffee which helped a lot. Venting on here helped as well as talking with some really close friends and my husband about how I was feeling. It seems like once you get things out in the open it's easier to deal with. My husband was/is very supportive and he even brought home a list of people I could go talk to on our medical...which is nice to have just in case. I think the coffee was the biggest help of all though, silly as it sounds it really seemed to feed my anxiety. After a few brain dead days I feel better then I've felt in years and years. I've been drinking coffee since I was a teen and I never thought I would be able to get through a day with out it, seriously. But I truly feel better and I don't think I will make drinking coffee in the morning a habit again any time soon.



Moving on, since last I wrote we have made it through a few more parties and had a blast doing it. We went to a birthday party and I'll admit I was nervous about it. They were doing a pinata and everything...so the potential for disaster was high. I've yet to figure out anything that seems sort of like candy, so a get together and holidays that involve candy make me a little nervous. The only candy like thing I can make has to stay frozen or it gets mushy and so it doesn't pack well. Anyways Atty just happened to be playing in the pool with his daddy when the pinata fun started so my hubby stayed in there with him and our other two boys were able to join the fun. Atty didn't even notice, but we did have a back up plan. His Auntie had bought him some special little toys just in case he noticed the candy that the other children had. He brothers were so understanding and after eating two pieces each gave the rest of the candy to me to save for later before Atty saw it. I had talked to them about it before hand and that always helps. Being that they are only four and three it's really sweet that they are so understanding about their brother. I mean you know, candy is CANDY, and they still gave it up to support their brother. Gets my eyes all teary.


We also had a get together with Atty's biological brother and his family. His brother was placed with this family when he was six weeks old and we have been in contact ever since. He's two and a half now and it was wild seeing him playing with Atty. They were so much alike! We all had a banana cake I made to celebrate what we are calling Happy Family Day (we decided from now on our two families will celebrate Happy Family Day on August 1st), and Atty ate his special muffins so it worked out well. I put candles in the cake and the muffins and Atty didn't seem to mind at all.He's really be so accepting of this diet so far. We went to the zoo the next day and I packed a lunch for all of us, because I wanted to take care of our company but also so that I could be in control of the food to some extent and plan what Atty was going to eat around that. It went smoothly. Except for the fact that I brought four muffins that I tried freezing to see how that would work...and it doesn't work...they got mushy in the center when they thawed out and Atty declared them Yucky, so sad. I was hoping that I could just make big batches on the weekends and freeze them, sort of stock pile on them, since he loves them so much and goes through them so fast...but I guess that not going to be an option. At least the way I've been making them, maybe I will need to experiment a little more with it. Our company did want to buy the kids some ice cream or something to be nice. She talked to me first about it which I really appreciated and we settled on seeing if there were any snow cones. I read in a book about how you could get a plain snow cone and then add sugar free flavoring to it, like the stevita breeze powder so I thought we could try that. Unfortunately all the snow cones apparently came already flavored so it was a no go. Since there was no way to make a treat for Atty the subject was dropped and thankfully our guests realized that it wouldn't be fair to get any of the kids a treat if Atty couldn't have one.


Every time we successfully make it through a social function involving food I feel a little bit more confident. I learn new things every time it feels like and it makes the next time easier. I know that there are many more social events to come and right now I'm already trying to come up with different ideas for Halloween...the worst candy holiday of all!!! But with a little creativity I think we can make it work.


Atty is starting to not be so enthusiastic about food that he was loving before, which does make me nervous. There is so little for him to choose from that I'm afraid of running out of options and then having to force/bribe him to eat and it turning into a control issue. So far it's been a breeze for the most part and I've been really careful in letting him have choices when available and keeping things positive. He's starting to back off of the avocado some which I hate to see. The only meat he has been eating is his special hot dogs and turkey sausage and now he's not eating that as well, but doesn't seem to have anything else new that he likes more to replace it. He use to love chicken or roasted turkey but he's not into that right now either. He does love the muffins and they are made out of almond meal so there is some protein in there and he's eating certain nuts too so that's good. There seems to be a macadamia nut shortage or something because I can't find them bulk in my regular store nor have I been able to buy them bulk in the other two stores I looked at. I seriously don't know what that's all about. My regular store just told me that they haven't been able to get them in a while, but the guy didn't know why. They are the prized nut on his diet, so I really need to get my hands on some more!! I love that he is eating nuts because they are such a good source of protein and fat for his diet, but...they are so stinkin' expensive! One bag of almond meal is around eleven bucks and it only makes about 24 muffins! That only last about three days...so yeah, yikes! I think I'm going to need to order bulk on line and fork over the hefty price because in the long run it will save me money. The macadamia nuts are even more expensive then the almonds...and the cheapest nut {the peanut} he can't have because it has the highest carb content...of course. Nothings ever easy or straight forward on this diet. I guess because peanuts are not actually nuts that's probably why. The other nuts have carbs too, but because of the fat content, or something like that, his dietitian said I don't have to count those carbs. He use to love peanut butter, so I was sad to see it go. I can't get him to warm to almond butter he just doesn't go for it. I need to get a scale so that I can branch out in recipes for him. In all the Ketogenic recipes the ingredients are measured by weight, so in order to use those recipes I have to get a gram scale. I haven't done that yet because a good one is really pricey and I didn't know if I was going to need one or not. Being as he has to be on this diet for 2 years, and my creativity is starting to feel maxed, and he's already getting bored with the meals, I'm thinking I better just get a scale and jump in with both feet.

Should be rosy

I keep waking up with this sinking gut feeling wondering if I remembered to give Atty his medicine the night before...or it will cross my mind mid day and I will stand there racking my brain contemplating whether or not I mixed up his medicine that morning. I've never forgotten his medicine, but it haunts me anyways. I have awake nightmares {and nightmares at night} along the lines of there being some sort of natural disaster and I am unable to get him more medicine and/or food for his diet and he goes into status epilepticus. The very thought of status epilepticus (which is doctors have mention way too many times) makes my heart lurch and my stomach turn. I don't want to think about it but I do. The thought of having to witness my son going into nonstop seizures with no way of helping him makes my anxiety spin out of control. I've read a lot of stuff about having survival kits for emergency and such and I've seen it mentioned that you should have extra medicine on hand so I'm thinking I will ask his doctor about having an extra months supply around...even if I have to pay out of pocket. I don't want to sound like a paranoid freak but it would give me such peace of mind I think, or at least a little. Extra medicine and extra oil plus foods on his diet that can keep like tuna and nuts.

It scares me that there is this beast looming to snatch up my child if we can't keep that beast at bay. If there is a break in the chain, if we don't make peace with the beast it will swallow up my child and not return him. How many days...or would it just be hours...how could I face that as a parent? The image skitters through my mind. I remember his 6 minute seizure in the hospital. How the panic scorched through my body and I shoved it down so that I could count and stay clear headed. I remember ordering the nurse to get the emergency meds and as she ran from the room I fought to say in control. How every second seemed like an eternity. The words that flew out of my mouth were not pretty. I lost all control of that part as I struggled to stay in control of the rest. I remember begging him to come back to me, telling him over and over again that it was all going to be okay, that he was going to get better even though at that moment I didn't know if it was true or not. Status epilepticus just keep ringing in my head. I think of that seizure and I know that I could not endure a seizure with no end...watching my child fade before my eyes in what looks like such a violent and unreachable way.

I think I'm suffering from post traumatic stress disorder or something. My anxiety has been overwhelmingly high for about a month now. I've cut out coffee...something I thought I'd never do...and that did help a lot. I've been trying some other natural things to that have helped some, but I haven't feel this sort of anxiety in years and years. It's making me irritable and easily frustrated. Not in a way that I can't cope with but I feel it and don't like it. Mix that in with a bit of depression (baby blues? I don't know.) and I'm a mess in the inside. I know this is always how I deal with stressful situations, I react to them WAY later on. I keep it together during the ordeal and then fall apart much later when it feels more safe to do so. I already had a total blubbery messy cry fest a few weeks after his seizures stopped and I thought that was me dealing with it, but apparently that was just the tip of the ice burg. I know I will come out of this but I think I'm going to need more help...I feel sort of stupid about it but I think I will see about seeing a professional that know about post traumatic stress disorder. Just so I can talk this through with them. It better then bottling it up. I've done lots of bottling my whole life and it's not good. So anyways that's what is going on right now. Everything should be rosy because he's really doing well, but instead I'm feeling my anxiety bubble up from deep with in and I need to get it capped pronto.

It's July and we are still in the clear!

Atty had a great past weekend and we tackled an all day outing and a fourth of July party. A little planning and prepping on my part goes a long way! I am discovering that I must always bring more then I would ever think he would eat. Just to be safe. There's usually always left overs but that's better then not enough and no way to get more... He got to enjoy a small slice of watermelon...he ate it all the way down to the green practically! He was so happy to get some watermelon it was really cute, he said "hummmmm watermelon" right before I took this picture. I told him he could only have one slice on his magic diet and to enjoy it because he couldn't have any more. It may sound mean but it prepares him so that there are no surprises and it is discussed ahead of time. He seems to understand this and even appreciate the clarity. He likes to talk about how good the limited food is when he's eating it and I make sure to really share in his enjoyment. He did ask for more and I reminded him again and offered him something he could have and he was okay with it. Which says a lot considering how much he loves watermelon.

He also loves the muffins I've been making for him with almond meal. REALLY loves them! As in I think he would eat a whole batch all at once if I let him. I brought six up to the picnic and he ate four, then ate the other two at dinner! They don't count as carbs, the way I make them for him on his diet, so that is awesome and makes for a great filler. I'm making a dozen every other day or so it seems.


It was so nice to see him running around and climbing on things. I can't help but still compare him to his lethargic little self of a couple month ago. I wonder when I will stop doing that? I did have one scare for myself when I realize I didn't bring his emergency medicine and we were way up in the mountains, no cell phone service (didn't know that ahead of time) or anything. My stomach started to hurt immediately and I almost started to really break down and cry feeling so very guilty for being so forgetful and unresponsible. It's just not on my mind as much now that he's not having any seizures. My husband and I have decided to keep one of his emergency meds locked up in the van to be safe. That's when we need to have it on us is when we are out and about so it makes sense, I don't know why we didn't think of that before.

It felt like a really big step to get right back into hiking and exploring in the great outdoors, way up on the mountain like we love. I don't want to live in fear. We didn't really go very far from the park, we stayed close to main trails and on this outing my mom came with as well as Jacob so there were lots of extra hands and eyes. A good way to ease right back into the way things were for the most part. We did bring a stroller for Atty because he get worn out really easily, doesn't have very good muscle tone, and he walks REALLY, REALLY, REALLY SLOW! As in I think snails crawl faster then he walks...ha, ha!

On the fourth of July this little cutie when to a party. I again brought lots of his food and I even made him some heart shaped 'candies' to eat with macadamia nut butter and butter and stevia and a little unsweetened chocolate. I put them in the freezer until set then packed them in the cooler, he loved them! They did count as a carb but the whole batch together only counted as one carb so he was able to eat them all if he wanted to. I only brought him two of his hot dogs and that almost ended as a disaster when he nearly lost his plate to the very dirty ground...but I swooped in and saved them at the last possible second...I might have nearly plowed a couple people to the ground in the process. ;) Next time I should probably bring extra to be safe. For the most part he hung around his cooler again wanting to eat but he eventually went to play for a while so that was nice.

This is the first year he actually enjoyed the fire works. He did need to be snuggled on my lap to enjoy them but it was so nice to hear him happily watching the fire works instead of clinging to me in fear and crying. I think the way the fireworks look like they are coming down at you always scared him, and then there is all the noise which tends to overwhelm him. I could tell the noise still bothered him this year as he started to get wound up and a bit frantic. That's why I had him on my lap to center him and calm him down. Right before the show really got started he was starting to short circuit (as I call it) and I told him he was going to have to take a break in the van if he couldn't listen to mommy. Wrong idea, because I couldn't actually take him to the van being as the show was about to start and hubby would need my help with the other kids. He look up and me and said "yeah mommy van, van mommy". Oops! So that's when I scooped him up and reassured him that he was going to enjoy the show...he asked about the van a few more times and felt pretty tense, but he relaxed soon after. When he first saw the fire works he called them pretty flowers...so cute.

All and all the party was a success!

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I also made the magical S'mores for Atty a little while ago and he LOVED them!! As in Love, Loved them! It was a little tricky to figure out the exact amounts of each component to give him and he ended up not being able to have very much banana and of course he also had to skip the fruit/veggie in the meal we had for dinner to make up for it BUT it was well worth it to see how happy he was to get a treat with every one else. The rest of us had regular S'mores and he had his type and I just talked about it and kept in normal and not a big deal and he total didn't care. What a relief. He did notice when his brothers ate one marshmallow each at the very end. He was still eating his treat and the boys really wanted a marshmallow so I gave in and in retrospect it was pushing it. Atty asked about 'sticky?' a couple times and I could tell he was talking about what his brothers were eating but I just kept drawing his attention back to his treat and they finished theirs and we put everything away immediately. We had a really nice time around the fire in the back yard and got to enjoy a great treat too.

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I spoke with his doctor and she agreed that Atty doesn't need to be on the third medicine! So we are slowly...very, very slowly...taking him off it. Yeah!!

He also has a doctors appointment with her in a couple weeks and we are working in getting him some different various assessments. Hopefully on the same day, as she said...because it's a long drive to Seattle from here. I also picked up paper work from our local school to get started on him getting some evaluations through the school system. That is where his doctor told me to start anyways, although I've been told nothing will even be started until August at the earliest. I need to tackle the paperwork still, I looked it over and am not looking forward to it.

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I did a whole post about how frustrating the whole potty training with Atty is. Then I let it sit for about a week...then I deleted it. Lets just say it was getting Really Frustrating. But we seem to be making some progress so that's good. He does really well if he doesn't have any bottoms on, but as soon as he's dressed he has one accident after another. At home I'm fine with clothing optional if it means less accidents and more progress. It's when we have places to go that I am running into all sorts of frustration. Four kids out and about with one that will not stop peeing in his pants...brings me to tears.

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Another frustration is the fact that I have to change his sheets almost every morning...and he wears a pull up to bed! He has to take his medicine before bed and he has to drink a full cup of water with his medicine so there in lies my problem. What to do, what to do? I've tried having him use the toilet again if he's still awake, before I go to bed. That sort of helps. I can't wake him up to use the potty, he just freaks out or doesn't wake up. He can be a super deep sleeper when he wants to...the rest of the time he's restless and fussy. Not sure what my solution is here because giving him his meds at a different time just isn't an option. I don't know how I will ever be able to get him out of pull ups at night if he has to guzzle a glass of water before bed! I guess I shouldn't even worry about that until we get the daytime pinned down...In the mean time I am drowning in sheets though! I already have more then enough laundry to do thank you very much.

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I've started a list of questions and concerns for the doctor's appointment...it' a must! Nothing really major on there so far though, which is a good thing right. :) I wonder if the DNA testing will be done by the time we go in. The muscle biopsy came back negative for Mitochondrial but his doctor said that it doesn't mean he doesn't have it. That is the first test they do when they suspect Mito but it's not always accurate and since there are other factors that lead them to believe he has Mito they want to go on to the next step in testing. So his doctor sent his blood in for some sort of extensive testing. I really don't know a lot about it but I am sure she will explain further when we see each other. She's awesome that way! I continue to feel so thankful that she is our doctor.

...one time, one time, one time...

Atty has not had a seizure since May 26th! He's been on the Modified Atkins for seizures since April 28th and in those first days he was having so many seizures I would loss track, upwards of 50-60 a day, all different types. Now...none. I am still so utterly amazed!!!

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I'm going to talk to his doctors about getting him off of the 3rd (most recently added) medicine. Then he would be on only two. I really don't feel like the third is doing any good at all. The Lamictal will finally be at the targeted therapeutic dose by this weekend. The valproic acid is suppose to work well with the Lamictal so those are the two we will stick with for now, but the third is Zonisamide and I really don't feel like he should be on it any more. It's the one that has giving him severe insomnia at higher doses. I think at this point it will just do more harm then good to keep him on it.

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He's still not sleeping well at night. This is actually pretty normal though because even before the seizures he had a hard time at night. It's always been a frustration, well at least it is if you want a good nights sleep, ha, ha. He just seems to get restless and maybe he's having bad dreams, I really don't know. Some times he seems like he's in pain. He just starts fussing and crying, and it's hard to comfort him because he's usually so out of it. I'm still sleeping in his room right now and if I tell him I will be going out so that I can sleep or that he's waking up the baby, he will usually make an effort to stop but then he starts right back up again a while later. I took him in for a sleep study and everything, before the seizures even started but we've never been able to get any answers as to why. I don't do well being woken up over and over again and since he's often not the only one of our little children that needs me in the middle of the night I have not had a good nights sleep in WAY TOO LONG (we're talking years people)!! I was giving him a natural remedy to help him with his restlessness which help for at least the first part of the night, but he can't take it now. I want to ask the doctors for help but I don't want him to just be prescribed a sleeping medicine on top of all the medicines he's already taking. I think I will just bring it up and see what ideas they have to offer, if any.

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He is getting really repetitive with his speech again. He already had a tendency to do this before but this is to the extreme. It started out with "mom, mom, mom" (and repeat) when he first started talking again. Now just about anything he's talking about he will say the same word or phrase over and over again. Even when you answer him right away. I started telling him, "One Time" and so now he will be getting repetitive and I will start to say "Atty..." and he will interrupt me and say "one time, one time, one time..." Ugggggg! Kind of funny though in a 'your going to drive me crazy' sort of a way.

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I need to figure out getting him into a speech therapist. Not sure where I will squeeze that into our already hectic lives but I think it would be good for him to at least be evaluated because I feel like he has a hard time pronouncing things. He's also still drooling, not sure who to talk to about that. I was told that I would be having a follow up visit at the end of this month but the end is coming up and no one has called to schedule one so I guess I will have to make some more calls today to figure that out. I want to get him evaluated to see how far behind he is developmentally too, I can tell that he is, I'm just not sure how worried I should be or what we should be doing about it. I've been putting this all off because it was so hectic there for a while and it's felt so nice with everything calmed down a bit. But I need to jump right back in and start scheduling some more appointments so I can stay ahead of the game and give him the best start possible. I'm not sure if I've ever mentioned this before but his birth mother tests at a third grade level and has a lot of mental health issues so I worry... A Lot. I was told when we adopted that there was at least a 50% chance that he would also have mental health issues (if not more because both birth parents have mental health issues) and they were not sure developmentally where he would stand. He came with a long, long, long list of possible complications and what ifs. We had to read them all over in front of the case worker so that she could be sure we understood all that we could be facing. I feel strongly that being proactive and observant and getting him the right treatments is going to make a huge difference in his life no matter what he is faced with. I know for a fact his birth mother didn't have that. She had a really neglectful childhood from what I've heard. She didn't have someone standing in her corner ready to fight for her...which is sad...I've often wondered if she would have been a completely different person if she had just had some one to love her better and care for her more. I know that some things are unavoidable, genetic and what not, but I feel strongly that what you surround a child with, the tools that you provide for them to navigate their way through life, the guidance you give from the very beginning, those things can make a huge difference. Huge. That and prayer. Lots and lots of prayer. Praying together with your children. Praying alone for your children.

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So far this diet has not really been much of a struggle. Not a lot to report. I think because he already had diet restrictions before we started this diet he was already use to only being able to eat certain food. He did start sneaking into food though right before his seizures started so I'm worried about him trying to start that again. He was actually getting up at night after we went to bed and I would catch him in the kitchen or trying to get into the kitchen. We were having to try all sorts of thing to keep him out of the food. The main frustration I've run into so far is that he is starting to say he is hungry All The Time. It can get really annoying. Usually I can offer him some of his Stevita juice and that will calm him down for a while. He does love the special muffins and they don't count as carbs the way that I am making them so those help. I find myself making a batch every other day right now. I decided to try and make cookies with the same recipe and it worked! They are delicate and so I have to be careful in how they are stored (so that they don't fall apart) but now if I get the urge to make a batch of cookies Atty can have some of his kind too and won't feel left out. I put the rest of the batch in the freezer last night so I guess we will see if that works or not. I hope so because then I will be able to save them for longer and just pull out as many as I need at the time. Same with his muffins I want to see if I can keep those in the freezer too then I could make a huge batch on the weekend and store it in the freezer for later use. I think the only time this diet is going to be a stress is during holidays, because they all center around food (and treats!) and there are going to be things like candy that I can't duplicate. I've read about how you can give them money to buy something special instead or get them toys but for Atty I don't know that he would really care about that. He can get pretty fixated on food and wanting what everyone else has, especially if it's treats like candy. We don't eat candy around her very often, mostly just around holidays really, so it's not much of an issue on an day to day basis. I'm just going to have to have some sort of a game plan before a holiday rolls around. Camping is the only other scenario that I can think of that might present a problem. In the past we've always made S'mores for a special treat or at least roasted marshmallows. I'm in the process of coming up with a fake S'mores idea that I think will work. I know he likes the fake graham cracker I've made and I've come up with a chocolate idea using macadamia nut butter, unsweetened chocolate and stevia. Then for the "marshmallow" I'm going to use banana chunks that he will roast over the fire with us on a stick so he can feel like he's part of the whole thing too. Put it all together and it will be almost the same colors and look of a S'more and that's all that matters really to him. Plus it will be yummy, bonus...ha, ha! Having a good game plan is definitely what prevents melt downs (with all children) so I may seem a little obsessive with this but I've got to stay ahead of the curve and use my creativity to the max to make things run as smoothly as possible.

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Okay I'm done rambling for now...

Our first successful outing!

I survived my first party out with Atty...and so did he! There was food Every Where!! Food that he couldn't have. Food that his brothers could have. Food that everyone else was eating. You don't really notice those sorts of things until you have a kid that can't have that food. I packed a lot of food for him and it was a good thing I did because he was fixated on food. His brothers ate a little and then went to play, Atty on the other hand kept saying he was hungry and wanting to eat. He almost lost it a couple times when I had to start telling him no and that he had to go play. It was getting ridiculous though how he just wanted to sit next to his cooler and eat and eat and eat! I'm glad I brought his Stevita drink mix because that helped smooth over a few situations and there was plenty of water available to mix it with. So this is what I did that worked. I brought a little cooler and packed it with:

• His special muffins I made that morning, I decided to put some of his strawberry Stevita powdered drink in his magic muffin mix instead of plain stevia and I'm glad I did. It made them even more delicious! I made sure he was really excited about it so that he was looking forward to his special treat. I brought 4 even though we were only going to be at the party for about three hours. Good thing I did because he blew through every one of them! I saved one for the last in case there were any treats and it's a good thing I did because there was some cake that ended up getting passed out. He didn't even care about it because he had his muffin.


• I packed 2 cooked hot dogs with a cold pack and he ate those while his brothers ate there food from the BBQ. He can't have the regular hot dogs because of the fillers, and he doesn't like hamburger patty's plus people often put marinate on the patty's that he wouldn't be able to have.


• I made him his flax seed meal crackers, for a filler just in case...he ate them too.


• I packed nuts to snack on.


• I packed his Stevita powdered drink mix, so glad I remembered that because he definitely noticed when his brothers got juice.


• I packed him an avocado and he ate the whole thing.


• I packed 1/3 of a banana (5 grams of carbs), I also went ahead and let him eat 1/3 of a piece of watermelon (another 5 grams of carbs) and I just left the carb out of his dinner that night. He really likes watermelon and so do his brothers so they were eating a lot of it and I didn't want Atty to feel totally left out.

I did get a few funny looks when I talked to Atty about his special magic diet, as we are calling it, but that's okay. I made sure to be proactive and voice out loud a lot about the fact that he was on a special diet and couldn't have any food except the food that I brought him. I felt a little pushy and over bearing but I know it's so important that there aren't any mistakes so I just tried to be as friendly about it as possible. And I hovered, I'll admit it. Maybe at some point I will trust that he won't get his hands on non-diet food, but for now I am on super high alert. That being said he has still almost got his hand on a few things not on his diet while we were at home. Just the other day he snuck and eat some raw carrot left over from one of his brothers lunch. I then had to skip his carb for dinner because I didn't know how much extra carb he had consumed. Which is why when we were at the party I felt like I had to be extremely cautious with him. It would be too easy to loss track of the seriousness of the issue in the middle of all the chaos, it's easy enough to do that at home. It's hard because people who don't know him would not be able to tell that he has a serious health issue and wouldn't know to stop him if he grabbed some food, or they wouldn't know not to offer him something. One seemingly harmless slip up could cause him to have seizures. Just one slip up. I'm tossing around the idea of making some sort of cute tag to pin on his back at parties that lets people know he can't eat any of the party food, but I'm not sure yet how I feel about doing that to him. I'm going to get him a medical alert bracelet, but there's not a lot of room on those for the details and they are not always all that noticeable. He is starting to learn at home to bring me any food he finds and he's been being pretty good about it (except for the carrot thing). I'm repetitively using the term magic diet and talking about Atty's food and other people's food and he seems to be picking up on the difference. I am hoping that at some point he will be able to speak up for himself and tell others if they are giving him something he can't have. Maybe I'll be able to relax a bit then. Then again maybe not... Hopefully he will understand better at some point the importance of this diet. I worry though because he has to be on it for at least two years and if he stays seizure free he won't remember the seizures he had at three when he's four or five. The importance of the diet might be lost on him. I've really got to stop worrying about things like that though and instead focus on the here and now. The here and now seems a little less intimidating now that I have survived my first party with Atty! I think the only thing I will change for future outings is that I will wait to give him the carb I bring just in case there is a carb that he wants at the party (like he did with the watermelon) I also need to get a big measuring cup I can bring with me so I can measure out the right amount depending on what it is that he wants. I will copy the page that has those measurements on it and bring it with in the cooler. I will also remember that I do have a little wiggle room in the sense that I can leave out a carb in a regular meal if needed. Like I did when he wanted the watermelon. I started to stress out about it and I did say no at first but then I realized there was no need to make it a sad thing when I could just not give him a carb later to make up for it. That sort of thing is okay every once and a while. As long as he gets no more then his 15 grams total for the day he doesn't necessarily need them split up into his main meals.

Another day down...another hurdle crossed and we continue on this journey.