Routines are such a lovely thing

Quinn has gone over 30 hours with no tonic clonic seizures ! So that is good news, but he is now having around 20 ( that we notice could be more) absence seizures a day. These seizures last about 3-5 secs each and he doesn't fall which is good. He just makes a little funny noise and sometimes his foot twitches and he just stares and doesn't respond to anyone. I know for sure now that he has experienced all the following type of seizures over the last month. Tonic Clonic, Myo clonic, Absence seizures. We are starting to kind of get a routine going around here which is great because I am a routine person and feel just horrible without it ! So when Quinn has a seizure now I can get him into his position of being on his side, head tipped up and still manage to get the girls breakfast ready as they watch Quinn for me. I don't want to put to much responsibility on the girls but I also want them to know what to do and look for with Quinn. It does break my heart every time when the girls ask, When is Quinn going to get better or does he have to go to the hospital again. I got a special bag of $ store things together for the girls so when Quinn has his recovery time after the seizures and needs to sleep the girls get to pick one thing each from the goodie bag and then head downstairs so I can have quiet up here.
Quinn has been getting up so early these days. This morning was 3am... umm that is still night time in my books. But there isn't much I can do as he starts having his absence seizures as soon as he wakes up. Oh I miss the days of putting him in his bed room and closing the door !!! I miss having my bedroom to just Kevin and I. 
Giving Quinn his meds has become so hard. Whenever I do it he spits it out or throws up. So I need to have Kevin around to give the meds. Thankfully they need to be given 2 times a day not 3.
Soccer starts tomorrow night for the girls and then goes on Mon and Wed nights til Juneish. Quinn's soccer starts Thurs night ! His balance is way better now that he is off the clonazepam so hopefully he can play on Thursday because he has been looking forward to this so much !
I managed to get my floor washed last night !!!! It wasn't by choice though... Quinn decided to take his poopy diaper off and run through my kitchen.... ugh. Once the floor was washed and dry I couldn't believe how awesome it felt lol... Pretty sad when you are used to a gross floor ! But that is the joys of 3 kids under 7, 3 dogs and 2 kittens.
Ok on the topic of diapers and Quinn... since the seizures have started he is completely back into diapers and pull ups which isn't nice at all. He also now thinks its great fun to play with his poop. I'm blaming it on him hitting his head to many times...;)  Because that poor head of his is full of bruises and bumps !
So that is all the news from here ! Going to get on with my morning and continue the pots of coffee into my system :)

Seizures galore

On Tues we noticed Quinn had a rash that was getting worse and spreading over his body, by Wed it was horrible an he was covered. It was a hot, raised, red, bumpy rash. I called the Dr and we went into the hospital that afternoon ( since Quinn decided to get up at 3am that morning ). The Dr decided it was best to take him off the clonazepam because that was most likely causing the allergic reaction. We went 5 days seizure free and then BAM... they started at 5am this morning. Quinn is still on Valproic Acid which he has been on for almost 2.5 weeks. So apparently the clonazepam was helping control the seizures and go figure he has to be allergic to it :(. So very frustrating ! 
Seizures started at 5am this morning and continued til 9am. He had approx 16 seizures.. I lost count. We managed to get Emma on the bus for school before heading out the door back to the ER at the hospital. Then I had to cancel the allergist appointment which took 3 weeks to get into :( That appointment was this morning and we were stuck in the hospital... so now we need to wait til the 23rd of May to see the allergist.  Can't seem to catch a break it seems.... At the hospital the nurses tried and tried to get the IV in so if needed they could give him ativan if he started having more seizures. They finally after warming his foot for an hour were able to get the IV in his foot.. the poor guys veins are all blown, too tiny or not there :(. The Dr finally came to see us at noon and started Quinn on Keppra along with his valproic acid. This drug can take longer to get built up in the system so most likely it will be more and more seizures to deal with every morning for awhile.
My girls ( since they had been gone) witnessed the seizures today. I had them watch and explained that this isn't hurting Quinn but to make sure he is one his side so he doesn't choke. Poor Emma was the most concerned... she watched and just said when is he going to be better mom ?? I said, I hope soon ! Life is so hard right now. This morning Quinn had all his seizures from 5-9am, during this time I was trying to get Emma ready for school while making sure Quinn didn't try to stand up in between all his seizures. BUT I managed to get Emma out the door in time to make the bus ..but I was worried there for a minute !
I keep having to remember me...I keep forgetting to eat, drink... even go to the bathroom.... I go all day with forgetting these things because Quinn takes so much time and effort that I forget ! Wishing I was losing tons of weight but nope :) I'm gaining...
Today was tough... I wanted to give up so many times.... call it quits... run away... but that wouldn't solve anything. I want to hit my head on the wall I am so frustrated.... Its been 5 weeks of this on Saturday... feels like forever. We haven't had much good news or hope with anything so far except finding out he doesn't have a brain tumor. It is so hard to just keep watching you little guy suffer over and over... pinning him on the hospital and he yells and cries as they try for mins to get the IV in him. Holding him down as they sedate him to sleep for the MRI and he fights it... having him look in my eyes as he is full of suffering and me pinning him down... Someday I may crack...hopefully not soon! Just trying to hold onto that life will get easier and this is out of my control.

Can't seem to catch a break

Poor Quinn !! This morning his rash is worse then ever and covering his whole body. We are thinking it is a allergic reaction to the clonazepam since this rash started on Friday and he started the new addition of this drug on Thurs. This drug has helped to control his tonic seizures in the morning so that is great but the side affects appear to be horrible balance and temper problems. Plus now this allergic reaction. He says it really hurts his rash, called the Dr's office and spoke to the nurse and we have to go back in at 1pm to see the Dr. so another trip to the hospital !~Just seems like that little guy can't catch a break ! Its one thing or another ! He also hit his head AGAIN this morning so he is *resting* now. It is so hard to get him to lay down, he just wants to run all the time.
The sedation for the MRI and spinal tap yesterday went well ! He did take a long time to wake up after the sedation.  He is supposed to lay flat to avoid headaches from the spinal tap because of the fluid loss, but he has other plans. When we got to the hospital I was allowed to go into the room with him to get him sedated so he wouldn't freak out because he was exhausted at this point and starving. It was tough holding my little guy while they had to pin him and hold the mask tight to his face to get him asleep. Then I left the room right away and went to sit in the hospital with Kevin til the Mri was done. I was so thankful a lady from church had brought us a meal that morning, because by the time we got home I was in no mood to make supper!
The girls have been fighting lots with Quinn and each other :( So it makes things really tough around here. It is so hard trying to balance everything !
I will update you all to what the Dr says about Quinn this afternoon !

Test Day ! and some feelings from me

The day we have been waiting for is here !! Poor Quinn threw up last night so he really has an empty tummy right now and he can't eat until supper time tonight if all goes well ! He has been asking for food since 7am this morning, and doesn't understand why he can't eat. He is allowed some juice and ice pops until 1030am thank goodness !
I am surprisingly calm, not worried, not even stressed. I guess knowing this is all out of my control also helps even though there is always that little annoying man on my shoulder suggesting I could have prevented this all ( his seizures) and that it was something I did wrong when he was a baby or I was pregnant that is causing all this. Oh the joys of being a mom... Why is it we think we can try to fix anything and blame ourselves for everything....  For all of you that don't know me too well I am the first born child in my family, I have always been very *determined*, like order, like a schedule an like to be stable. Plus I also seem to think I can FIX everything. So this whole month has been a tough month as I feel like I am failing as a parent. I couldn't protect him from this and I can't ease his pain and suffering. I am doing my best to not be *angry*, I say in my head... God , why him... take everything but my kids. I don't care about the house, things... All the matters is my children. Don't mess with my kids is what I am trying to say... So I fight this battle in my head, I am grateful for 2 healthy children ( My girls) but also think why can't I have 3 healthy kids like other people, why me, why us.. go screw around with other people ( yes I know that sounds horrible but it is my honest feelings and I had warned you that you might not all agree with my words and I don't agree with them either but its how I feel ) :). I don't feel that I am per say *better * then other people so don't get my wrong on that . Well I will update you all tonight or tomorrow morning on how things went today. I will take my stack of medical books on seizures and epilepsy to the hospital waiting room with me. I think I will know more then the Dr's after all this... :)

P.s. when I talk about the little man on my shoulder for some reason he is the Koodo man from the tv commericals lol.... For you that don't know google KoodoMobile and you will see the little man with the blue tight suit.

Pre MRI/Spinal tap day

Tomorrow is the big day... we have been waiting almost a month for this day and thankfully we didn't have to wait 5 more months ! I am nervous but calm at this moment... I find the less I think about it and try and live a *normal day* I don't worry and think the worst. Yesterday was a bad day because it was Sunday and we were home not doing much all day so your brain starts to think and think the worst. I find my emotions are one extreme to the next, I either think Quinn is dying and cant be saved or I think maybe nothing is wrong and its an easy tweaking of meds ( which working with getting meds to control his seizures has proven difficult). Another thing I am struggling with is people's looks and glares when we do go out with Quinn and he screams randomly or falls running all the time. I have a new respect for all hyper strung children because in Quinn's case the meds are making this worse and he isn't usually this crazy and people glare at you like you don't know how to handle your child. Quinn right now doesn't have a lot of control over his body or mind. Plus I think it would be very frustrating to be a 3 year old and not be able to do everything he did up until this happened.  Today we went into the city to get his blood work done and also the girls had dentist appointments.  Even a trip to the city is exhausting for Quinn and myself haha..
My girls came back on Saturday... we are settling back into a *normal* routine. I am stressed about when my sister leaves as to how I am going to manage the girls with Quinn and also getting food on the table. Being that Quinn needs to be watched 24/7 he needs to be by my side all the time which he isn't really fond of. He wants to do everything the girls are ! We had to buy baby gates, baby monitors an diapers again for Quinn since he started having all these problems. Just when I thought we were getting into the clear with our kids growing older and sleeping through the night this happens !! Yes I know things could be worse but sometimes I feel like some people just get the crappy end of the stick..( like me and us) (yes I am feeling sorry for myself ). Just seems like its always one thing or another around here and we can never just not have stress for a day or week. I would love a calm life on a beach with a good looking waiter and a nanny to help with the kids lol.. yes i will keep dreaming ! :)
Tomorrow we have to be at the hospital by noon. Quinn can't have anything to eat after midnight tonight and can't have anything to drink after 1030am tomorrow morning. THAT should be WONDERFUL... NOT.... its going to be a fight ! But this is what needs to be done. They are doing the MRI first at 130ish and then the spinal tap to follow. Once he starts to wake up I will be able to see him again, and then once he is  back to his *normal* we will be able to head home. Then the waiting game for results begins. They said if something bad comes back with will know later that day or Wed hopefully. SO hopefully we DON'T hear from them til next week :)

Posted some pictures of the kids from this afternoon playing in the mud/sand.....  :)

Part 2

Part 2

Quinn was on the waiting list for an MRI but the waiting list was 6 months, after me begging and pleading with the Dr's we were able to get the MRI moved to Tues this coming week.  They are also now going to do a spinal tap and take some fluid to run some tests on. Now everyone keeps asking me why this test.... honestly I don't want to know. I am just trusting what the Dr thinks is best right now because I don't want to know what they THINK they are looking for is. When and if we get to that bridge we will cross that bridge then... I have enough on my crazy brain as it is without stressing about what could it possibly be they are looking for or might find. So the MRI is at 1:30pm , we are praying the sedation goes well and the recovery goes well also. On Thursday Quinn meets with an allergist ( which I requested because I would like to make sure there is nothing he is allergic too that could possibly be causing these seizures) his appointment is in the morning.
My girls come back today !!! It has been 2 weeks since they left ... find it hard to believe it has been 2 weeks already. The only way I can describe it to people is that it feels like we are living in a twilight zone... I know my girls exist but at the same time it feels *normal* to not have them here. My baby sister is bringing them back from AB... FINGERS crossed she doesn't get lost ;) Then she is going to stay for a little bit to help out with the girls which will be great since Quinn takes all my time.
Last night was a tough night to fall asleep... between my awful restless legs ( and I was too lazy to get out of bed to get something to help with that haha) and my mind just going on about Quinn's health I had a hard time getting to sleep. Mind control is sooo hard to do ..its like a have a little annoying man on my one shoulder saying and tell me the worst about Quinn and his health and then on the other shoulder a little happy man saying everything will be ok, don't worry and trust. Well little happy man on my shoulder that is WAY harder then it sounds to not worry and trust that Quinn will be healthy someday and not die... Yes DIE has been coming in my head lately... its the bad man on my other shoulder trying to get to me and making me think about Quinn dying. Any who I managed to shut these crazy little men off and finally get some sleep. The mind is a crazy and weird thing !

A new friend I met online who also has a daughter with epilepsy suggested I create a blog as a way for me to let me feelings out an use as therapy.  This is probably a great thing for me as I am a bottler of emotions and don't express my feelings well :) Then I just crack under pressure several months later so hopefully I can avoid some of that and if you want to follow my daily struggles and joys you may come along on this viral journey of emotions. Be warned there will be ups and downs... mostly downs as I tend to see more downs then ups haha... there may be some things you don't agree with but know I am a wonderful loving person and wouldn't hurt anyone.
So let me tell you a little about me before I go into lots of venting and complaining !
My name is Rachel, I have been married for almost 7 years to a man ;), I have 3 children 2 girls Emma and Brooke and then comes Quinn. I also have 3 dogs, a black lab named Duke, and 2 Bernese mountain dogs named Aerielle and Sebastian. We also have 2 kittens named Gracie and Rapunzel ( Rapunzel's name changes whenever Brooke meets someone she likes, so right now Rapunzel's name is actually Rebecca haha). We live on an acreage in SK Canada. I love being a loner with my kids and dogs... I do like other people but I love being with animals...there is something about an animals company that is amazing. They never judge you, they give you love all the time and they respect you ( well most times).  I am a stay at home mom, Emma started Kindergarten and Brooke will in the Fall so I will just have Quinn at home with me !
So our journey with this new life started March 24th a Saturday in the afternoon at 3pm. We were all enjoying a *normal* Saturday, girls were playing in the kitchen, I was on the computer ( that is normal for me ), hubby was in the garage and Quinn was playing cars in the living room a few feet from me. I was playing Zuma blitz on Facebook ( a game were you shoot a coloured ball at other coloured balls to break up the balls... yes very mind blowing haha). So as I was playing this awesome game I noticed Quinn was quiet ! NOW that in itself is extremely odd and rare ! Lets just say Quinn usually behaves like a boy with ADD, ADHD, and a thousand espresso shots in his system, a store full of candy in his body and a LOUD screaming voice ! So I look over and see him laying on his side in a weird way.. I call his name and he doesn't move or say anything. I went over to him right away and he was unconscious and not breathing.  I picked him up and flipped him upside down thinking he had choked on something. He was a completely healthy 3 year old up to this point and had never had health concerns, so I just assumed he was choking ! As I had him upside down and hitting his back I was going outside as fast as I could to the garage to get Kevin ( my husband) because he has a lot more training in the CPR first aid area. I gave Quinn to Kevin and said I found him like this and not breathing, so I ran to the house to call 911. I call 911 and go figure my nightmare I always have ( not joking) of not being able to get through to 911 comes true. They cant hear me as I am talking to them.. our house phone decides to crap out  ! So I then have to try and find my cell phone.... now if you know me I am the type of person that puts things in a *safe place* and cant find them again !!! After what seemed like forever I found my cell phone and called 911 again. At this point Quinn was still  unconscious but breathing if he was on his side. So we called the girls to get their shoes on and I managed to grab my awesome Lulu lemon sweater I live in and my purse and ran out the door. We all piled in the back of the car with Quinn laying on my lap and drove as fast as we could to the city and met the ambulance on the edge of the city. By this point Quinn was alert but groggy. I got in the ambulance with Quinn and headed to the RUH hospital and Kevin went home with the girls to get car seats and then came back into the city and met us at RUH. After getting to the ER at RUH we had to wait 25 mins to register and then headed to the Ped ER area of the hospital and then had to wait 20 mins for a bed to open up !! THEN we had to wait 2 hours to even see a Dr... As you will find out I really dislike our health care system !! Dr's looked at him and everyone was stumped, they sent us home and said that he probably choked on something or it was a freak accident. They did do an xray of his chest at the hospital to check to make sure there was nothing stuck in his throat but that showed everything was fine.  Kevin and I have aged 50 more years at this point... I cant describe the feeling of finding your child not breathing and unconscious ! It is a horrible helpless feeling.
So we are at home wondering how we are going to live our lives and if this is going to happen again. He seems fine and we continue life as *normal* for 6 days til at 630am on a Friday morning he has an episode again !! This time just I head to the RUH ER with Quinn and Kevin stays home with the girls because its no fun being in the dirty hospital for hours.....  I get to RUH and they look at Quinn and schedule an EEG test for 1pm that day. But since he was acting normal they suggested I just leave and go to Walmart or home. So since Quinn didn't have shoes with him and his shirt was kind of yucky looking we went to Walmart. We are wandering around Walmart for about 25 mins and he has another episode ( by this time we know its seizures) in the toy section of Walmart. I calmly held him but then start worrying as he is turning blue !! THANK God this awesome lady who happened to be a nurse came to me and asked if I needed help ! Another lady called 911 ( meanwhile there is a crowd of people gawking at us) the EMS people get there and we take another trip to the ER at RUH. Now we now we got a problem and something is up. Quinn has the EEG test and the results come back with epileptic showing in the brain. So the ped neurologist says they believe he has Epilepsy. They prescribe him clobazam and hope this will help control the seizures, he warns that his drug can make him extra hyper... OH GREAT we are thinking BUT if it controls the seizures I guess we have to deal with the crazy Quinn. He manages to go 4 days with no seizures and then has 2 seizures , then 2 the next day and then 4 the following day. Now they change his meds to Valproic Acid ( Depakote) liquid. This is a fight to get into him 3 times a day because he hates the taste of the meds. But he doesn't have a full out 3 min long seizure on these meds so that is good news.. but he does start having up to 30 mini seizures a day ! So we continue to meet with the ped neuro dr and decide to change the meds to sprinkle form and up the dose. But he continues to have full seizures in the mornings when he wakes up for an hour and half  ( they are cluster seizures). So now the Dr's add another drug to hopefully control the morning seizures. But here we are him still having morning seizures !  ......... I will continue this post later :)