Things haven't been going to smoothly around here. We just can't seem to catch a break with anything these days. We found out the medication Quinn needs and uses isn't covered by our insurance because there is a generic form available. The generic form isn't working for him so we need the brand name Keppra. This costs $200 every 2 weeks.... So this is very frustrating but its something he needs... Also found out we will have to purchase a special scale for the Ketogenic Diet and this costs $300. We also still have to purchase a helmet for him as well. As if this wasn't all stressful enough we have all these extra costs now.
I met with a very helpful lady at RUH this morning. Our meeting lasted 2 hours and we discussed the Ketogenic diet for Quinn. She is a registered diet lady and she is the only one who does the Ketogenic Diet in the whole province. The plan is to admit Quinn to the hospital on the 28th and start the diet, he needs to be monitored because this is such an extreme diet. I will get his meal plan when we leave the hospital and that is why we need this scale. He can only eat what is on the meal list of the day at the time stated. It has to be the PERFECT weight not up or down... right on in grams. This diet isn't really a meal per say... it will consist of some whipping cream, butter, mayo, oil etc... because this is a high fat diet they are not allowed many carbs at all. We even have to change his toothpaste, shampoo, lotion anything that goes by his body on his skin because that can affect the diet. I will also have to do several urine tests at home a day with Ketone strips to check his levels. So that won't be a fun week for him or me ! I will be staying with him at the hospital day and night. Now hopefully we will be able to make my brothers wedding now and then I would bring the girls to my parents for a couple weeks again. I feel horrible leaving the girls all the time and it hurts so badly to send them away. I know they are having a good time but I'm not. Brooke will end up missing her Kindergarten day ( her 1st go at seeing around the school and meeting teachers and etc) the girls will also miss their soccer games and tournaments. Emma will miss a couple weeks of school again. So sick and tired of this all.
I am also struggling with dealing with Quinn daily as he is very aggressive and hard to control. ( this is due to the medications and seizures). He hits/punches me in the face ( it hurts), he throws things also does really bad things nobody would even think of. He beats on the girls, today when Emma got home from school and was eating her snack of fruit cup, he out of nowhere comes and grabs it and throws it in her face... sigh.... this leads to Emma screaming and yelling and Quinn going more nuts. I just want to run and hide or bang my head on the wall. This happens all day long every day. Everyday is a struggle , tonight I was trying to get them all to bed because Kev is working nights. I would finally get Quinn settled and almost asleep an then Brooke would yell for me or need something and Quinn would be wired and wide awake/crazy man.
Also I am struggling with our life now.... We had 3 kids in 4 years because we wanted to have a life and enjoy the kids at the same age and be able to do things ! Also I wanted to be able to do my own hobbies and work because this is really what I enjoy. Honestly ( don't judge) I am not a kid person. Don't get me wrong... I LOVE LOVE LOVE my kids to death ...but I am not a person who loves and enjoys kids. Yes that may sound selfish but I also want me time to do my thing. Thus the reason of having kids so fast and in a row like that so I could get that me time once they are in school. I just have never been that person that is great with kids and is wonderful with them. Some people are soooo great with kids and special needs kids and can do anything with them and they always seem happy. Well that isnt me... I am trying but this is really hard. I have never been a positive happy lalalala yah yah yah person... I have always been a harsh, world is a crummy place most times kind of person haha... :)
So I also am struggling with me wanting to punch God in the face... my poor mother is thinking right now ( she isn't actually going to say this is she ?? sorry mama this is my feelings even if they are wrong which I know haha ), I really just want to yell at the big man and tell him I think he is a big jerk and give him a kick in the balls. I managed to not be angry at God up until this past week... then poop hit the fan.... We just seemed to get bad news after more bad news and its breaking me even though I don't want it too. There is also other stress factors I can't mention because anyone can read this blog :)
Well that is my rant peoples....
Quinn has still been having little seizures everyday but no big ones since last Friday. BUT I'm sure he will have one at some point this week because that is how we roll apparently !!
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