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!

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.

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!

*

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.

*

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.

*

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.

*

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.

*

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!!!

*

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.

*

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.

*

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.

*

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.

*

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.

*

Okay I'm done rambling for now...

{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.

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.