This morning started off with seizures again... Poor Quinn had 28 seizures by 7am this morning. Total seizure count that we saw by tonight was about 44 seizures. He also started having seizures in the night now :( The night was the only time I could actually rest because I knew he wasn't having seizures. It is such a horrible helpless and hopeless feeling to watch and hold Quinn while he has these seizures. I just wish I could fix this and make it all better. Yesterday was 7 weeks ago since this all started, too think that my little man would have to go through HUNDREDS more seizures that we have noticed is awful. I really don't understand why children need to suffer and go through pain. The poor guy has done nothing in his life to deserve this and I struggle so much with WHY. Its not fair his life has had to change so much and him have to go through all these seizures. I have tried to not change his life too much for his sake. I don't want him to feel like he is different or has a disability but its hard when he just keeps having more and more seizures. Life can be so cruel.
I was looking on the photos on my hallway wall the other night before bed... just thinking about how things were so easy and life was so different back then. I miss them days soooooo much... I hate life being a struggle everyday to survive an get through the day. I feel like life is just slipping away and I am missing out on everything the girls are going through and doing because Quinn takes all my time. My poor girls have to suffer as well because they don't get to do the things they used to do before with me. I would just love to feel me again and not an exhausted drained mentally and emotionally zombie.
Sometimes I just wish I was 5 and could have my mom hold me an tell me everything was going to be ok, but I'm 27 and have 3 little kids that depend on me to be their support.
Quinn's med giving has turned into a nightmare.... He gags on the meds and throws them up several times before we manage to keep them down. Poor guy has a hard time even eating now because his gag reflex is so bad. After lunch the girls just said the word throw up and he gaged and threw up :(.
Oh if I had a billion $'s I would hire a nurse to help us out full time. BUT since that isn't happening I guess this is our life and I somehow need to accept that.
On the agenda to get done at some point in the next monthish is moving my craft room out and switching rooms with Quinn. We are doing this because my current craft room is right across from our bed room... so hopefully some day soon if these seizures ever stop Quinn can sleep across from us. NOW if you have seen my craft/jewelry room this is a huge task... sigh... I will have to repaint the rooms because Quinn doesn't need a light purple pink room. Plus take all my shelving down an move all my jewelry and fabric over to the other room. ALL in hopes someday... someday I get to have my hobbies back in my life !!
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