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.

A moment of weakness

Because all signs are pointing towards Atty having Mitochondrial disease (still waiting for results from the biopsy) I started doing some more research. I did research about Mitochondrial disease around the time that he had the severe reaction to his two month vaccines, but being as he is over three years old now I had forgotten a lot. I started watching videos about kids with Mito and now I can't stop crying. I feel anger (I can't really explain that, but I feel it in there somewhere). Frustration. Despair perhaps. Actually I really don't know how I feel other then the overwhelming sadness. MERRF or MIRAS seems like the most likely diagnosis for him, but there are lots of others. Both of those have lots of unknowns. Lots of things that Could happen. Not that will, but Could...the unknown is horrible. This is all so overwhelming. I keep thinking about him, how he was a few months ago. Just a few month ago. Now I can't stop crying. I know I'm getting ahead of myself, because we haven't received the results yet, the words haven't been said in all finality. But I feel sure of the diagnosis, there are just too many things lining up that point to this. I know that it's a waste of time to cry about this when I don't have a final diagnosis of Mito from the doctor yet, but I guess I'm feeling weak at the moment. I'm letting my fears take over. It's a pretty easy thing to do right now, I'm fighting a losing battle with my anxiety, something I've struggled with my whole life anyways. Sometimes I just need a good cry so that when I am faced with the battle for real I will have the strength to fight my way through. I'd rather have a break down at home in privacy then in the doctors office. I was going to post about how the modified Atkins diet is working (yes we are seeing some awesome results right now) and how it's not working (he's seems to be having a reaction to the dairy in the diet as I feared he would). I guess I will go into detail on that later, right now I feel really distraught and I wanted the Atkins post to be a bit more upbeat.

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.

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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.