We went out for supper last night to have Quinn's last *real* meal. As we were out for supper I sat at the table noticing all the other people at the other tables just texting or whatever they were doing on their cell phones. I really annoys me that people can't even put their cell phone away for a 30 min meal out. YES this was happening at my table also... NOT going to name names though. ;) I find it so disrespectful that they can't set their phone down and have this thing called a conversation with a real person. It also annoys me when you see that person yapping on their cell phone while purchasing items in the groceries store and just pretending the cashier doesn't exist. Have I mentioned I hate cell phones?
So tomorrow I go into the hospital with Quinn to start the diet. I am sooo nervous about this ! I have had a horrible week mainly for myself and me having a pity party for myself. I am still struggling with my bitterness and it bothers me to go places and see healthy kids and their parents. Its not fair is what I feel and maybe once I get into the hospital this week I will get over that its not fair feeling for a bit. I just want to kick something and yell and scream because I miss my girls and this isn't the way life was supposed to be ! Things have also been stressful on the home front if you catch my drift. I don't know if it is all the stress and exhaustion build up.I can only hope that but at times everything just seems hopeless. Quinn had a bad weekend with seizures. He has also been starting to refuse his meds which turns into a 2 hour fight and me crying my eyes out and losing my cool. He doesn't understand he needs his meds to help control his seizures somewhat. AS we found out on Saturday since he was 3 hours late taking his meds on Friday night so Saturday afternoon was horrible for seizures. I am just so tired of everything in my life being a fight... everything in my life seems to be a fight now and I hate conflict and fighting. Oh if I could fix this all I would but I can't fix this and fix what other people and persons don't want to fix.
This week is for sure going to be a huge test and very trying. So hopefully I can make it through the week :)
I shall keep you all posted as the week goes on !
Sunday, May 27, 2012
Tuesday, May 22, 2012
Stress and worry going into next week
On Monday Quinn will be admitted to the hospital to start the Ketogenic diet. I am doing my best to not worry and stress about this diet but realty is setting in. I honestly have no clue how I am going to be able to handle him crying for food an me making sure he doesn't get any food he shouldn't. For the past 3.5 years when ever he has asked for a snack he has pretty much gotten a snack. He has never had to go hungry in the past an I don't know how we are going to manage this. Also not sure how I am going to get his meds into him once he is on the diet. He can't have juice or sugar so everything I have used in the past to try and get his meds down I won't be able to use. He can have his meds in oil or mayo... so I already know this isn't going to go well. He threw up all his meds 3 times tonight....so that was just over $20 he threw up tonight ...sigh.... This gets pricey when he does this all the time with his medication.
The girls left for Alberta with my sister yesterday, it was so hard to send them off again. This trip away was hard since they are missing so much. They are going to miss soccer, their soccer tournament, field day at school, Brooke's 1st day of kindergarten.
SO to deal with all my stress what does Rachel do......? Go buy paint and take on a huge project because ya know how I have nothing to do in my life and its sooooo boring.. haha NOT. Last night I started painting Quinn's current bedroom, since we are going to be moving him to my craft/work room because that room is right across from our bedroom. I hate the colour of Quinn's walls plus they were really beat up from him living in his bedroom. The colour I choose was cheer which is a nice yellow to make me happy. Today when I was painting I turned my back an Quinn grabbed the paint brush and dunked it into the full can of paint and splattered my walls an floors... sigh.... painting with a 3 year old boy in the room is insanity. I think I yelled my voice away all day today ! But I did manage to get 2 coats on and now just have to finish cutting along the baseboards on the ground. I offered to paint Quinn's room he is moving into, but the poor boy says he wants pink and won't change his mind. SO... I will let him think about it for a few more months ;) Plus the bedroom is already a light purple and has bright pink curtains.
This morning I went into the city quick to grab a few things for our hospital trip next week. Had to get some goodies from the $ store to keep Quinn busy for his 24 hours EEG in the hospital on Monday !
Tomorrow afternoon we meet with the allergist, so hopefully we can get some testing done on Quinn to see if he has some allergies we don't know about !
The girls left for Alberta with my sister yesterday, it was so hard to send them off again. This trip away was hard since they are missing so much. They are going to miss soccer, their soccer tournament, field day at school, Brooke's 1st day of kindergarten.
SO to deal with all my stress what does Rachel do......? Go buy paint and take on a huge project because ya know how I have nothing to do in my life and its sooooo boring.. haha NOT. Last night I started painting Quinn's current bedroom, since we are going to be moving him to my craft/work room because that room is right across from our bedroom. I hate the colour of Quinn's walls plus they were really beat up from him living in his bedroom. The colour I choose was cheer which is a nice yellow to make me happy. Today when I was painting I turned my back an Quinn grabbed the paint brush and dunked it into the full can of paint and splattered my walls an floors... sigh.... painting with a 3 year old boy in the room is insanity. I think I yelled my voice away all day today ! But I did manage to get 2 coats on and now just have to finish cutting along the baseboards on the ground. I offered to paint Quinn's room he is moving into, but the poor boy says he wants pink and won't change his mind. SO... I will let him think about it for a few more months ;) Plus the bedroom is already a light purple and has bright pink curtains.
This morning I went into the city quick to grab a few things for our hospital trip next week. Had to get some goodies from the $ store to keep Quinn busy for his 24 hours EEG in the hospital on Monday !
Tomorrow afternoon we meet with the allergist, so hopefully we can get some testing done on Quinn to see if he has some allergies we don't know about !
Friday, May 18, 2012
My wall of words
This past week I have been fighting to get through everyday since this battle we are fighting will have been going on for 8 weeks tomorrow. I don't know if it is just hard to get through everyday because I can't accept the fact our lives have changed or accepting the fact I have to give up everything I have worked on so hard with my business an hobbies. I know I just need to stop pouting and get on with our *new* way of life but it is so hard to accept this life an all the challenges ahead. I also am very stressed about the ketogenic diet which starts on the 28th, and stressed about sending the girls away again. Emma said to me last night, Mom I don't want to go away, I want to stay here because I am going to miss my friends. :( It is so flippin hard to accept as a mother you can't care for your children. Quinn has taken my whole life and time the last 8 weeks and hopefully someday that won't be the case if we can get his seizures under control. I hate sending the girls away...It isn't the way things are supposed to be. SO this is why I have started my words on paper sticky tacked to my wall above my water cooler( bc our water cooler takes forever to fill your glass so I thought it would be a good place to put the happy quotes). I have found several quotes to encourage me when I am feeling blah and wanting to jump off a bridge. My favorite so far is "' My strength is made perfect in weakness II Corinthians'' .
The positive things going in our lives right now is that we have found out with have a great church family and great neighbors in the area. From the meals that they have delivered to words of wisdom, cards and just stopping by to say hi. (ps if you are going to stop by and say hi be prepared to see me in a state nobody should see me in... I don't find the need to get dresses or do my hair if I am not going out haha ). You sure find out who your true friends are in a time of a struggle !
The Dr increased Quinn's medication again yesterday in hopes of trying to get the seizures under control. Also they booked him in for the 24 hour EEG in the hospital on the 28th when he goes into the hospital for the diet. Quinn hasn't thrown his medication up in almost 2 days so that is great. I was ready to give up the other day because I would work soooo hard all day to get food into him because he doesn't like to eat anymore. Then come medication time I would finally get all his meds down and then he would gag and throw EVERYTHING up and back to the beginning for me of forcing his meds down. If it was 1 or 2 pills it wouldn't be so bad but its 6 pills at night and 5 in the AM.
We also got the garden completely planted this week ! I felt the need to add more to my work load because that is how I roll haha... BUT the kids did enjoy helping plant everything!
Quinn is still having seizures everyday. He took a few good hits to the head and chin yesterday, poor little man !
Quinn goes to the allergist on Wednesday next week, so we shall see what the Dr says. My brother's wedding is also next week but I won't be able to make it to Alberta for the wedding. In part to Kevin having to work and not be able to get time off and also because of how many seizures Quinn is still having. I also don't think I could deal with all the people at the wedding... I can handle small groups but not a huge group. Coming from my family there is no small gatherings.... Since I have 7 brothers and 2 sisters and my future sister in law comes from a large family also.
Hope you all have a great weekend !
The positive things going in our lives right now is that we have found out with have a great church family and great neighbors in the area. From the meals that they have delivered to words of wisdom, cards and just stopping by to say hi. (ps if you are going to stop by and say hi be prepared to see me in a state nobody should see me in... I don't find the need to get dresses or do my hair if I am not going out haha ). You sure find out who your true friends are in a time of a struggle !
The Dr increased Quinn's medication again yesterday in hopes of trying to get the seizures under control. Also they booked him in for the 24 hour EEG in the hospital on the 28th when he goes into the hospital for the diet. Quinn hasn't thrown his medication up in almost 2 days so that is great. I was ready to give up the other day because I would work soooo hard all day to get food into him because he doesn't like to eat anymore. Then come medication time I would finally get all his meds down and then he would gag and throw EVERYTHING up and back to the beginning for me of forcing his meds down. If it was 1 or 2 pills it wouldn't be so bad but its 6 pills at night and 5 in the AM.
We also got the garden completely planted this week ! I felt the need to add more to my work load because that is how I roll haha... BUT the kids did enjoy helping plant everything!
Quinn is still having seizures everyday. He took a few good hits to the head and chin yesterday, poor little man !
Quinn goes to the allergist on Wednesday next week, so we shall see what the Dr says. My brother's wedding is also next week but I won't be able to make it to Alberta for the wedding. In part to Kevin having to work and not be able to get time off and also because of how many seizures Quinn is still having. I also don't think I could deal with all the people at the wedding... I can handle small groups but not a huge group. Coming from my family there is no small gatherings.... Since I have 7 brothers and 2 sisters and my future sister in law comes from a large family also.
Hope you all have a great weekend !
Tuesday, May 15, 2012
Puppy dreams
I keep dreaming of puppies and more puppies...so hopefully that means Aerielle is going to come into heat right away so I can get my dream of puppies :) I am pretty sure heaven is going to be full of puppies and I can just lay on the heaven floors and get attacked with love from puppies. Haha.. My dogs are therapy for me.. they just know I need them and they know exactly what to do to make me feel better. Yesterday Aerielle and Sebastian just sat beside me ( as close as they could get to being on top of me) and Aerielle licked my arm very gently over and over. Yes I talk to my doggies.. because they listen and love me no matter what ;) Oh dogs.. oh puppies... I just LOVE them. I don't know what I would do if we ever had to sell them. I think I would break..Emma seems to think if we did ever move back into a town that all the dogs and cats would live in the house with us ! Thanks to Grandma Di for that.... Apparently on her last trip to visit Grandma Di there was a house for sale by her and she said to Emma that we should buy that and move there. Well Emma thinks we can do that and just take all our animals with us. Nope not happening haha... I don't think I could ever move back into the city or town again. I LOVE the quiet and peace that comes with country living. I love falling asleep to the sound of frogs and cricket thingys, also seeing all the stars. Mowing the grass is one of my favorite things to do, just being able to do whatever you want and have nobody around to watch you is great !
Now there is a couple things that are downfalls with having an acreage. Like when you don't ever get properly dressed and someone stops in !! lol... This has happened to me a few times in the last couple weeks. I'm sorry to the people that had to see me in a non presentable condition :)
Now there is a couple things that are downfalls with having an acreage. Like when you don't ever get properly dressed and someone stops in !! lol... This has happened to me a few times in the last couple weeks. I'm sorry to the people that had to see me in a non presentable condition :)
Sunday, May 13, 2012
Mothers Day and seizures
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 !!
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 !!
Friday, May 11, 2012
Into week 7
I can't believe we are in May and half way through May ! I keep thinking its April and half the time I don't know the day or month. 7 weeks ago tomorrow our lives changed and little did we know we would still be dealing an trying to cope with this all. People who have healthy children are so blessed.... they really don't know how lucky they are. I am still struggling with why Quinn and why me... since I am the main caretaker of Quinn. I really just wish I could *accept* this all and move forward and get on with our lives, but we keep hitting road blocks and bumps that make me wonder why again. Also never did I think I would be publicly blogging my thoughts and feelings to you all !! I was looking at my blog stats the other day and I can't believe the countries that have viewed my page. Malaysia, Germany, Russia, UK, USA and Canada.... That is a lot of people and places to think of me as a crazy lady ! haha... In case you haven't noticed already I never re read what I type before I post the blog. Mostly its because I'm lazy so if things don't make sense sometimes that is why :) BUT I always do run the spell check because that is only one click ;)
I have been getting my list together of things that need to be done or changed before Quinn comes home from the hospital after he starts the Ketogenic diet. This list includes.... Locks for all cupboards, fridges and freezers, making a special log book for once he starts the diet ( I already have a book but its hand written by me and I hate messy books, I want everything nice and neat in a binder ! ), buying his scale he needs for his food weights, getting ketone strips to test his urine at home and making a monthly or weekly schedule for the girls and Quinn. OH and I also need to pack the girls for going away for 2 weeksish again. ( yes I know weeksish isn't a word ;) ) , I also have to get the disability paper work filed and sent away.
Today I had a feeling of almost normal haha... the kids and I went into the city to drop some library books off and get Quinn's ice cream cake which I will post a picture of. It was a beautiful day out so in the city I was able to have the windows down an music cranked and rock the mini van out with the kids. YES I felt normal for that time period haha... It was great to be rockin out with the kids for a few mins even though i did keep having to look in the rear view mirror to make sure Quinn wasn't seizing. I feel young again and like I have no worries when I can do that... even though I am driving a mini van with 3 kids and I'm not actually that old haha.... Life was soooo simple when I was 16 ( even though I thought it was sooooo hard haha), so little memories like today are great. THEN reality sinks in when Brooke starts pinching Quinn and kicking him and Quinn starts screaming at Brooke an then Emma starts yelling and crying because Brooke is being too loud for her ears and it hurts her ears. So I tell Emma plug your ears then but she just continues to yell and scream and Brooke keeps pinching Quinn and screaming. Quinn is still yelling at Brooke and I'm yelling at Brooke, Emma and Quinn. Oh the joys of motherhood haha....
Here is the picture of Quinn and his cake :) Love that boys eyes and smiles !
I have been getting my list together of things that need to be done or changed before Quinn comes home from the hospital after he starts the Ketogenic diet. This list includes.... Locks for all cupboards, fridges and freezers, making a special log book for once he starts the diet ( I already have a book but its hand written by me and I hate messy books, I want everything nice and neat in a binder ! ), buying his scale he needs for his food weights, getting ketone strips to test his urine at home and making a monthly or weekly schedule for the girls and Quinn. OH and I also need to pack the girls for going away for 2 weeksish again. ( yes I know weeksish isn't a word ;) ) , I also have to get the disability paper work filed and sent away.
Today I had a feeling of almost normal haha... the kids and I went into the city to drop some library books off and get Quinn's ice cream cake which I will post a picture of. It was a beautiful day out so in the city I was able to have the windows down an music cranked and rock the mini van out with the kids. YES I felt normal for that time period haha... It was great to be rockin out with the kids for a few mins even though i did keep having to look in the rear view mirror to make sure Quinn wasn't seizing. I feel young again and like I have no worries when I can do that... even though I am driving a mini van with 3 kids and I'm not actually that old haha.... Life was soooo simple when I was 16 ( even though I thought it was sooooo hard haha), so little memories like today are great. THEN reality sinks in when Brooke starts pinching Quinn and kicking him and Quinn starts screaming at Brooke an then Emma starts yelling and crying because Brooke is being too loud for her ears and it hurts her ears. So I tell Emma plug your ears then but she just continues to yell and scream and Brooke keeps pinching Quinn and screaming. Quinn is still yelling at Brooke and I'm yelling at Brooke, Emma and Quinn. Oh the joys of motherhood haha....
Here is the picture of Quinn and his cake :) Love that boys eyes and smiles !
Thursday, May 10, 2012
Kindess/helpfulness and screw CN
So thankful for the great ladies that have been making meals for us. It helps out sooooo much and I really appreciate it.
At first this was a really hard thing for me to agree to accept ( help in the form of meals), because I am one of these people that doesn't like to ask for help because I feel I should be able to take care of my family. I still feel guilty about accepting meals but I am very thankful for them and trying to get over my guilty feelings and my feelings of me thinking I can do everything.
I must say I really have learned who are kind and thoughtful people that I know in all of this... I know who actually cares about my family and me. So thank you to everyone who is making me meals and for the people that have been sending me messages and emails. I appreciate it all :)
I have been thinking of this hospital stay that is 18 sleeps away... That is going to be a long week. I am required to provide my own food for me and once again pay for parking for the whole week. I am feeling so bad for poor Quinn.... I am going to go buy him an ice cream cake before this all and we can mourn the loss of him eating normal yummy food as we hork on an ice cream cake. This boy loves loves cakes, baking, this is going to be so hard on the poor little man.
We also had a scare today..... Our Dr's assistant who is a nurse called and said oh well we don't think week in May for him to come into the hospital is going to work bc the Dr isn't on call because he needs to study for his exam coming up. Boo flippidy doo... urgh I was ready to roar.... She said we would need to wait until later in June. I told her of all the plans for the girls to have someone to watch them and also mentioned how we need this done now. She said she would talk to the Dr and call me back... she called back and with good news... we are still a go. But talk about making me go from one extreme to the next... I feel we are always on a roller coaster... Soon as a plan is in place something seems to happen to try and screw that plan up !
Now to clear the air on the other things going on in our lives right now I couldn't talk about ;) I can now talk about it since my spouse said I could haha... the *other * issues going on are his job. They are being VERY unreasonable with him since this all happened with Quinn. Kevin took a week of bereavement leave when we were in the hospital at the beginning of this when we had no clue what was going on and when Quinn was blue and almost died. His work is now saying that what happened to us isn't a good enough excuse for using that time. They are treating him completely unfair right now and making unfair demands of him. He isn't even able to get a day off to go to my brothers wedding with us even though he has vacation to use. His inspector who is a royal meat head ( nice words bc I'm keeping this post G in rating) said he can't use his vacation because of the fact he has a staff meeting in Winnipeg the following week. WHICH he would be back for anyways.... I want to call this meat head of an inspector and give him a piece of my mind... I HATE this man with a passion yes I know hate is a strong word but he is causing us so much extra stress and grief right now. Also the week that Quinn is in the hospital they are sending Kevin to Winnipeg for that meeting and then to boot he has to working a stupid trade show on the weekend handing out flippin flyers !!!!! Grrrrr.... Just so much extra stress going on right now. So note to people out there....CN is a pain in the bottom.
At first this was a really hard thing for me to agree to accept ( help in the form of meals), because I am one of these people that doesn't like to ask for help because I feel I should be able to take care of my family. I still feel guilty about accepting meals but I am very thankful for them and trying to get over my guilty feelings and my feelings of me thinking I can do everything.
I must say I really have learned who are kind and thoughtful people that I know in all of this... I know who actually cares about my family and me. So thank you to everyone who is making me meals and for the people that have been sending me messages and emails. I appreciate it all :)
I have been thinking of this hospital stay that is 18 sleeps away... That is going to be a long week. I am required to provide my own food for me and once again pay for parking for the whole week. I am feeling so bad for poor Quinn.... I am going to go buy him an ice cream cake before this all and we can mourn the loss of him eating normal yummy food as we hork on an ice cream cake. This boy loves loves cakes, baking, this is going to be so hard on the poor little man.
We also had a scare today..... Our Dr's assistant who is a nurse called and said oh well we don't think week in May for him to come into the hospital is going to work bc the Dr isn't on call because he needs to study for his exam coming up. Boo flippidy doo... urgh I was ready to roar.... She said we would need to wait until later in June. I told her of all the plans for the girls to have someone to watch them and also mentioned how we need this done now. She said she would talk to the Dr and call me back... she called back and with good news... we are still a go. But talk about making me go from one extreme to the next... I feel we are always on a roller coaster... Soon as a plan is in place something seems to happen to try and screw that plan up !
Now to clear the air on the other things going on in our lives right now I couldn't talk about ;) I can now talk about it since my spouse said I could haha... the *other * issues going on are his job. They are being VERY unreasonable with him since this all happened with Quinn. Kevin took a week of bereavement leave when we were in the hospital at the beginning of this when we had no clue what was going on and when Quinn was blue and almost died. His work is now saying that what happened to us isn't a good enough excuse for using that time. They are treating him completely unfair right now and making unfair demands of him. He isn't even able to get a day off to go to my brothers wedding with us even though he has vacation to use. His inspector who is a royal meat head ( nice words bc I'm keeping this post G in rating) said he can't use his vacation because of the fact he has a staff meeting in Winnipeg the following week. WHICH he would be back for anyways.... I want to call this meat head of an inspector and give him a piece of my mind... I HATE this man with a passion yes I know hate is a strong word but he is causing us so much extra stress and grief right now. Also the week that Quinn is in the hospital they are sending Kevin to Winnipeg for that meeting and then to boot he has to working a stupid trade show on the weekend handing out flippin flyers !!!!! Grrrrr.... Just so much extra stress going on right now. So note to people out there....CN is a pain in the bottom.
Wednesday, May 9, 2012
Where to begin...
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 !!
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 !!
Tuesday, May 8, 2012
How to put this all in words...
Wowzers are my feelings/emotions/thoughts out of wack ! I have reached the point of not knowing what to say or do anymore. After 6 weeks of living in hell and hoping it would get better since that is what EVERYONE tells me ( which is a load of crap please don't sugar coat things for me), things aren't getting better at all. We are exactly in the same place as we were 6 weeks ago. He isn't any better and maybe even worse. I met with the neuro Dr yesterday.. He now knows not to sugar coat anything with me because I hate bullshit just tell me as it is ya know.. So Dr Huntsman and Lowery both are coming to the conclusion that this most likely is a Idiopathic form of Lennox–Gastaut syndrome. They are concluding to this because of his last EEG an also because of him not responding at all to any medications. Plus his seizures are appearing to get worse.. They have decided a plan for him which is, starting Friday this week once he is on an higher dose of meds they are giving him 2 weeks to improve. If he doesn't improve Quinn will be admitted to the hospital for up to a week an they will start the Ketogenic Diet. He needs to be in the hospital for this because they have to monitor him on this diet.. Google all this stuff if you want more info since I don't have the energy to to explain it to you all. Then if the diet fails we will have to go to steroids. So this means ( I don't think increasing the Keppra is going to help since it hasn't helped yet) I will be missing my brothers wedding in Alberta.Also my hubby is gone for work that week. I am going to end this post at that since I don't have ANYTHING nice to say... Maybe I will post tonight if my mood gets better !
Also poor Quinn got another dent in his head this morning from falling into a wooden chair during a drop seizure. JOYS ! not...
Also poor Quinn got another dent in his head this morning from falling into a wooden chair during a drop seizure. JOYS ! not...
Sunday, May 6, 2012
Musings from me
Made some decisions over the weekend.. Decided I am going to have to find more medical info from my side. I didn't want to go down this road again since I don't want to have to deal with the emotional aspects of this issue. Now for you that don't know I was adopted as a baby by my parents. It was a closed adoption but I did manage to find out who she was after Emma was born ( The lady that grew me for 9 months as I don't like the word birth mother). I wanted to keep this side of my past closed because of the issues that come with it. Lets just say she doesn't deserve the mother of the year award !! I am very thankful to my parents that I turned out the way I did and am *normal*. As of 5 years ago she lived in Red Deer, I had contact by mail for a couple months. She couldn't give me much info on my family medical history as she is a nut case herself... Lets just say she was in the crazy house most of her life. She has a completely messed up family and a long line of crazy family members that did time in the crazy house. As you can probably understand I didn't want any crazy in my life so I chose not to have a relationship with her. Now I am going to have to see if she is still alive and able to tell me something. I do know I have an older brother by a couple years that went into the foster system and I think was adopted at some point she told me but has no clue where he is... See what I mean about mother of the year award... She also doesn't know who my birth father is.. or won't say... SO don't want to reopen this chapter of my life but I need more info so we can see if there is something else causing all these seizures in Quinn. Today the poor guy would just fall to his knees and then hit his head .. he did this several times. So I will work on my letter to the lady that grew me over the next few days and then send it to her last know address and see if she manages to get it. p.s. if I go crazy its because of my genes ;) hahaha....
Friday, May 4, 2012
More Seizures and Dogs
Yesterday began with a tonic clonic seizure.. we managed to go 6 days with no tonic clonic seizures. It was about a minute long, today also began with a tonic clonic seizure. This morning he was eating already when it started so that makes it a lot more stressful on me. Thankfully it was just yogurt so most of the food managed to drool out of his mouth while he was seizing. Emma had school today and I managed to get her out the door just as the bus was pulling up. Didn't help that the poor girl woke up with a HUGE rats nest in her hair... sigh.... Took me forever to comb that out.
Quinn started soccer last night ! I wasn't sure if we were going to go because he was so pale and tired but he has been waiting for soccer to start for months ! He had fun for about 10 mins an then thought it would be funner to go play with the girls or pet peoples dogs. So we had to keep putting him back onto the soccer field. I met a St Bernard pup at the soccer field and oh.... I have puppy fever again. NOW for you that don't know me well I LOVE LOVE LOVE dogs... I would have a thousand if my hubby would let me ! I *currently* ;) have a Black Lab named Duke who is 2.5 and 2 Bernese Mountain Dogs, Aerielle is 1.5 and Sebastian is 1. Dogs are the best thing in life.... Pretty close to my kids... :) Dogs love you no matter what, they appreciate you and they are loyal oh and they don't talk back !. AND as a bonus when you get tired of them you just put them outside or in their dog run ! NOW you can't do that with your kids lol... well you could but child protective services would probably be called ! :) I love huge breed dogs.. on my list of wants is.... A Great Dane, St Bernard, and Great Pyrenees. Would also love a Boxer, Mastiff and Vizsla. I just love dogs and animals !
Hopefully we have a good seizure free/hospital free weekend ! Because this sucks... I don't have the words to explain my feelings ..
Have a great weekend everyone !
Quinn started soccer last night ! I wasn't sure if we were going to go because he was so pale and tired but he has been waiting for soccer to start for months ! He had fun for about 10 mins an then thought it would be funner to go play with the girls or pet peoples dogs. So we had to keep putting him back onto the soccer field. I met a St Bernard pup at the soccer field and oh.... I have puppy fever again. NOW for you that don't know me well I LOVE LOVE LOVE dogs... I would have a thousand if my hubby would let me ! I *currently* ;) have a Black Lab named Duke who is 2.5 and 2 Bernese Mountain Dogs, Aerielle is 1.5 and Sebastian is 1. Dogs are the best thing in life.... Pretty close to my kids... :) Dogs love you no matter what, they appreciate you and they are loyal oh and they don't talk back !. AND as a bonus when you get tired of them you just put them outside or in their dog run ! NOW you can't do that with your kids lol... well you could but child protective services would probably be called ! :) I love huge breed dogs.. on my list of wants is.... A Great Dane, St Bernard, and Great Pyrenees. Would also love a Boxer, Mastiff and Vizsla. I just love dogs and animals !
Hopefully we have a good seizure free/hospital free weekend ! Because this sucks... I don't have the words to explain my feelings ..
Have a great weekend everyone !
Wednesday, May 2, 2012
Little rodents causing PTSD
We have been having a mouse problem here on the acreage and they are attracted to my van ! This is because of the fact I have 3 children who snack when we go into the city or are coming home. Thus resulting in crumbs and bits of food that fall under the seats an on the floor of the van. We caught 2 mice last week ( killed) and on Monday I discovered another one ! I discover this gross beady eyed rodent when I opened my door at Walmart to get into my van. I controlled my screams as there was people around, this beady eyed mouse was staring at me with his bulging eyes. We stared each other down for about 10 secs. Then he disappeared somewhere between my door and gas pedals. I was still horrified but had at chiro appointment at 1115 and needed to get to that appointment. Thankfully I choose to wear flats instead of flip flops that day. I shook the whole way to the chiro appointment hoping this beady eyed mouse wouldn't run over my feet. Oh I could have cried... I HATE hate mice. I can handle spiders and even snakes now but not mice. Long story short I made it to the chiro and even made it home. But now am traumatised an cautiously open my van door expecting to see a mouse staring at me. Who knew a mouse could cause PTSD... I had nightmares all night about a mouse under my blankets... poor Kevin. I was kicked and twitching all night because that little gross mouse was trying to get my feet all night long. It amazes me how this mouse can upset my dreams so badly but everything else I have going on in my life doesn't cause me nightmares ! I have always been a crazy dreamer.. and I can usually remember everything from my dreams and also the little details. Kevin on the other hand doesn't remember anything or dream that often. I wonder why some people are such vivid dreamers...
Now I know I had a depressing frustrating post yesterday.... That was my feelings built up since I can only be happy happy for so long before a gloomy depressing post :)
Ok an update on Quinn, he is still responding well to the new meds, ( like no allergic reactions), so that is good news. He did sleep better last night which is great. Apparently my begging and pleading with God for a good nights sleep paid off... He has gone almost 5 days with no big seizures so that is great. Still having small seizures on and off but at least no big seizures. We meet next week with the Dr again and also I have an appointment with a lady about the special diet if we have to go that route.
News on Brooke... Oh this child drives me bonkers.... I don't know if she is acting horribly mean because of everything that has been going on in this house. She is being so cruel to Emma an also to Quinn at times. Telling them she doesn't love them, telling them they aren't her sister or brother. Saying Emma isn't beautiful and only she is. Throwing things at them, pinching them... I am ready to send this little girl back to AB with family. I try to make sure she gets one on one time with us but even that doesn't seem to be helping.
Some news on Emma.... She is loving soccer again. She also lost another tooth last night so she has 2 bottom teeth missing now. Which she is thrilled about. There is some negative things going on with her which I will write a post about soon. Its very upsetting to me since she is only in Kindergarten and feeling so much pressure already at this young age.
Its another gloomy rainy day here an the forecast says its supposed to stay that way all week ! So I will be praying for sun and warmth :)
Now I know I had a depressing frustrating post yesterday.... That was my feelings built up since I can only be happy happy for so long before a gloomy depressing post :)
Ok an update on Quinn, he is still responding well to the new meds, ( like no allergic reactions), so that is good news. He did sleep better last night which is great. Apparently my begging and pleading with God for a good nights sleep paid off... He has gone almost 5 days with no big seizures so that is great. Still having small seizures on and off but at least no big seizures. We meet next week with the Dr again and also I have an appointment with a lady about the special diet if we have to go that route.
News on Brooke... Oh this child drives me bonkers.... I don't know if she is acting horribly mean because of everything that has been going on in this house. She is being so cruel to Emma an also to Quinn at times. Telling them she doesn't love them, telling them they aren't her sister or brother. Saying Emma isn't beautiful and only she is. Throwing things at them, pinching them... I am ready to send this little girl back to AB with family. I try to make sure she gets one on one time with us but even that doesn't seem to be helping.
Some news on Emma.... She is loving soccer again. She also lost another tooth last night so she has 2 bottom teeth missing now. Which she is thrilled about. There is some negative things going on with her which I will write a post about soon. Its very upsetting to me since she is only in Kindergarten and feeling so much pressure already at this young age.
Its another gloomy rainy day here an the forecast says its supposed to stay that way all week ! So I will be praying for sun and warmth :)
Tuesday, May 1, 2012
Exhaustion mental and physical
Exhaustion....completely draining feeling.... wondering how you are going to get the energy to even breathe, move and make it through another day. I have been experiencing mental and physical exhaustion. I try to take my days just hour by hour since things could change at any moment. Trying to live *normal* for the girls sake and also for Quinn's. Wondering when my brain is going to explode or me fall over from being so tired. Quinn is still on his valproic acid and also the drug keppra. Now we are finding out that the crummy side affect so far of keppra is him waking up at 1am thinking its morning time... apparently it seems to mess with their sleeping time. Most times he is up for good at 3am and then the girls are up for good at 5-6am. Now this makes for LONG days... Plus Quinn doesn\t nap well for me at all ! The phone will ring or something will happen that makes a noise ( girls fighting) and then he is wide awake and no nap. I miss the days of putting him in his room and shutting the door.. but he needs 24/7 someone within arms/sight reach. Now this gets VERY exhausting as you can imagine... simple things like making a pot of coffee in the morning can take 25 mins to get ready to go ! Between chasing Quinn and making sure you are with him and he isn't going to fall is hard to do. Yes I know we can't protect him from every fall but until he gets his seizures under control we need to always be watching him. Good news is he hasn't had a tonic clonic seizure since Friday afternoon ! He is still having up to 30 small seizures a day though.
Brooke has been being her mean self today... she keeps mentioning REALLY loud so Emma can hear that she doesn't love Emma...sigh.... Emma takes this really hard and doesn't understand that Brooke is just being a cow and trying to rile Emma up. Also she has been telling Emma that only herself is beautiful and that Emma isn't..... sigh Yes I refer to my 4.5 going on 16 year old daughter as a cow.... NOW if you met Brooke you might understand lol... since I can't say what she really acts like that ends in a ch if you catch my drift I say cow... That girl can be the sweetest most darling girl in the world and change into the biggest drama Queen ever plus a nasty mean little cow. She is very blunt and has always been that way... she just says what is on her mind without sugar coating it ! She is going to do great things in life as long as she doesn't get herself into to much trouble before then ! Brooke also thinks everyone in this house should serve her every need ! From bringing her snacks, toys and blankets. While she just lays like a princess...oh an then has the nerve to get mad and throw what you brought her if it happens to be the wrong colour ! Oh Brooke... lol... That girl is one feisty little girl ! But I do love her dearly don't get me wrong ;)
So back to exhaustion... Oh how I would love to sleep for a week !! Have my brain take a vacation ! Doesn't help that is has been gloomy rainy and cold for awhile ! That makes a person feel even more blue ! Would love to have a day of * mourning my old life before this all* but I don't have the energy to even think of crying ! When I think back a couple months ago and I thought my life was crazy and hard compare to now... I would do almost anything to have a day back of that *old* life. So once again just hour by hour and day by day... not the way I *planned* my life for sure ! It feels like I am in the prison of hell... yes that is harsh I know... but its the same *torture* everyday... Just barely getting through life an waiting for a seizure to happen all day long and trying to be * normal*. This afternoon I was really struggling with how all my days are the same... just the same barely getting through day. I really wish I could just switch *jobs* with Kevin for a week. It is hard because he gets to leave this all everyday and I get to deal with seizures an getting the kids through the day.
Ok enough of my depressing gloomy blog for today !! ;)
On a lighter note... I have chocolate in my house !
Brooke has been being her mean self today... she keeps mentioning REALLY loud so Emma can hear that she doesn't love Emma...sigh.... Emma takes this really hard and doesn't understand that Brooke is just being a cow and trying to rile Emma up. Also she has been telling Emma that only herself is beautiful and that Emma isn't..... sigh Yes I refer to my 4.5 going on 16 year old daughter as a cow.... NOW if you met Brooke you might understand lol... since I can't say what she really acts like that ends in a ch if you catch my drift I say cow... That girl can be the sweetest most darling girl in the world and change into the biggest drama Queen ever plus a nasty mean little cow. She is very blunt and has always been that way... she just says what is on her mind without sugar coating it ! She is going to do great things in life as long as she doesn't get herself into to much trouble before then ! Brooke also thinks everyone in this house should serve her every need ! From bringing her snacks, toys and blankets. While she just lays like a princess...oh an then has the nerve to get mad and throw what you brought her if it happens to be the wrong colour ! Oh Brooke... lol... That girl is one feisty little girl ! But I do love her dearly don't get me wrong ;)
So back to exhaustion... Oh how I would love to sleep for a week !! Have my brain take a vacation ! Doesn't help that is has been gloomy rainy and cold for awhile ! That makes a person feel even more blue ! Would love to have a day of * mourning my old life before this all* but I don't have the energy to even think of crying ! When I think back a couple months ago and I thought my life was crazy and hard compare to now... I would do almost anything to have a day back of that *old* life. So once again just hour by hour and day by day... not the way I *planned* my life for sure ! It feels like I am in the prison of hell... yes that is harsh I know... but its the same *torture* everyday... Just barely getting through life an waiting for a seizure to happen all day long and trying to be * normal*. This afternoon I was really struggling with how all my days are the same... just the same barely getting through day. I really wish I could just switch *jobs* with Kevin for a week. It is hard because he gets to leave this all everyday and I get to deal with seizures an getting the kids through the day.
Ok enough of my depressing gloomy blog for today !! ;)
On a lighter note... I have chocolate in my house !
Subscribe to:
Posts (Atom)