~seizure FREE me~

~seizure FREE me~

Thursday, August 26, 2010

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.

Friday, August 6, 2010

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.