~seizure FREE me~

~seizure FREE me~

Wednesday, June 30, 2010

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.

1 comment:

Lisa said...

Yay for you and Atty! he is so adorable. You are doing great. :)