Trying not to be angry

This morning we headed into the city first thing as Quinn's bloodwork needed to be done. He was amazing as always with getting his blood drawn. Then as we were leaving the hospital and almost at our van he had a big tonic clonic seizure.  It lasted about 3 mins and then he slept in the van for a bit. Thankfuly I had ice with me from his lunch to put on his HUGE goose egg. He also scratched his knees. He went 3 days with no seizures so go figure the one time he doesn't have his helmet on he has to have one and hit the concrete. He cried so much and he looks so painful. I wish I could take away his pain and stop this hurt. I am so angry at this disorder and seizures.... WHY Quinn and WHY us... WHY can't it be fixed.... I wish I wasn't so angry at this condition.... it just kills me to have to watch him suffer over an over. He is such a good boy too... he rarely complains when at meal times everyone is eating food and he has his tiny meal of whipping cream, oil, medications, little bit of fruit and little bit of ham. I can see the hurt and frustration in his eyes though but he doesn't say anything. That hurt is killing me slowly as well.... It is sooo horrible not being able to help him or "fix" him. As a mother I feel like I am failing him because I can't just fix this. Its been over 3 months of this already... a few months into a life long battle.... So I need to work on getting my anger and frustrations dealt with but not sure how.

When it rains it pours...

What a week ! Started last week off with Quinn having seizures again. He had went 6 days with none and then started having about 5-10 a day again. He hasn't had one in 3 days now again so we shall wait for when they start again since that is the trend ;) This week I also got his forms back from the Dr with his diagnosis of Lennox Gastaut Syndrome. I also signed Quinn up for the Saskatoon Epilepsy walk on July 7th. He is doing the kids walk for epilepsy.
Then on Tuesday morning I got the dreaded unexpected call from my sister...whenever this happens it means bad news ! My Dad was in a bicycle accident while they were camping in the mountains. He hit a tree and then hit his head off a rock. He has a fractured skull, broken wrist, bruising to the front part of the brain and very sore, but they sent him home the same day ! Then I got another dreaded call yesterday morning.....My Dad was admitted to another hospital back home because he was still in severe pain. They ran another CT can and saw bleeding in the brain and swelling. So he is on high pain killers and they are hoping swelling with go down. I will give them a call today and see how he is doing.
One thing I have for sure learned these past months is we have no control over our lives... makes me sometimes feel hopeless with me being a control freak. I almost feel what is the point to planning anything ?
The local newspaper ran an article on Quinn, and another local newspaper is going to run something on him as well. The fundraiser the community is putting on is the 14th of July. It is so amazing they are doing this and will help relieve some stress !
Yesterday I also took the girls out to a movie... we do this about once a year since movies are crazy expensive these days ! We went to see Brave since they were looking forward to seeing a princess movie.
Emma also finished school on Thursday so Brooke, Quinn and I went to her little party in the afternoon. Felt like a dweeb since I was the only one with no husband there !! But Ive come to get used to being alone at everything and being a one man show !
Well the kids and I are off to church this morning and then working on cleaning the messy girls room!

Life changes in the past 3 months

Who knew so  much could change in 3 months ! Our lives have completely changed with Quinn going from a normal 3 year old boy to a special needs child. Myself going from thinking I was still somewhat "young" to having grey hairs all coming through and now having to dye my hair all the time to cover them up. My brain turning to mush and not able to focus on anything. Going from never having the girls be gone to having them away from home for 4 weeks in the last 3 months. Thinking my life was somewhat in our control to it totally not being in our control. My 6 year old daughter turning into a girl with teenage attitude. Looking at my life and thinking wow who knew so much could happen in 7 years. I went from care free and living life to married, 3 kids, having to move way to much and try and settle in, being alone with 2 babies in a strange new land while husband was away for 3 months becoming his dream job (which he thought at the time). So..maybe I have hit my mid life crisis ? Or it could be everything we have gone through the last few months. It is such a bizarre thing to lose complete control of your lives. The other day when we had funnel clouds in the sky and I could see them coming down I didn't even have any fear left in me. No fear at all.... I felt like ..you know what bring it on because you have thrown so much at me in the last 3 months why not a tornado...lol... yes sounds crazy I know... Just so odd how I go from having fear to no fear... I don't know if that is from exhaustion or other things.... I don't believe it is complete trust because I know I don't completely trust in my life... I have gained some trust but not 100% yet. Its like I am in a comatose state in my life.... nothing fazes me anymore and I feel like its just one shot after the other. Yes this all sounds depressing doesn't it... well its not totally depressing to me just how I feel most of the time. Its hard to have to listen to your little boy cry and scream for food and you can't give it too him because he can't have that food because of his extreme diet. It is so draining to watch him suffer through his seizures. So sad to see the sparkle kind of disappear in his eyes... it is still there at times but sometimes he just looks so tired and dead in the eyes. But I have to remain positive even though it is really hard too when the seizures keep happening an life is out of our control with Quinn and other things.

Trying to move on with life

Ever since Quinn's first event back in March of this year it is like I am stuck in that time. I can't believe Emma is done school next week already. I wish I could move on from this event and not feel stuck in it... guess that is the only way for me to describe it. It is like I am stuck in March and everything that has happened in between now and then is a blur.  Maybe that is normal for a traumatic event to burn a hole in your brain and make you feel like time just stopped but it didn't. I think I have completed my "mourning" period of this but maybe I haven't if I can't seem to move forward. Life is just so different now. I live every day minute by minute because things could change in a minute with Quinn. He still needs 24/7 attention and care so that is why the minute to minute. Plus the battle of food makes me live minute by minute ! I used to think into the future but that has all changed since Quinn's event. I can't even think a day in the future because it saddens me even though I try to hope for positive things. It is also hard because Quinn looks so "normal''... at times I forget about everything going on.
We are still waiting for genetic tests to come back on Quinn. We meet with the Dr's again on July 3rd so hopefully they can give us some info/news.
My girls came back home last week and my mom stayed to help out for almost a week. It was nice to see the girls but I forgot who makes all the noise in this house.... Brooke..Brooke... Brooke and a little bit Emma. Brooke is also being a little turkey when it comes to Quinn and food. Pointing out that she is eating something he can't ... Brooke just likes to tease and irate anybody she can. I also realized I have to cook for other people... because Kev and I were just eating whatever and whenever. It takes me so long to prepare and cook Quinn's meals that I am done with cooking and don't want to make anything for us !

Weekly update

The girls came home Wednesday evening! Was so happy to see them but soon remembered how much noise they make! Brooke and Quinn were right back into fighting mode within the hour of the girls getting home. Thankfully my mom is staying for a few days to help out since I have no clue how I would do it without help right now. Meal times right now are separate for the kids, Quinn goes outside with my mom while the girls eat to distract him. Quinn's meals are very set times 8am, 1130am, 430pm, and 730pm. He goes for a nap at about 12 or 1230. This will be challenging when I don't have help!  I am getting some help from home care starting next week. A nurse will be coming out for a few hours on Thursday for Quinn.
I have started preparing Quinn's meals the day, but still takes me an hour and half every night to measure and prepare everything for the next day ! I'm hoping I can get faster at this soon... but measuring, weighing and labeling everything takes so much time.
The GOOD news is we have seen improvements with the seizures since he started the diet. The diet is so much work and really hard on Quinn but at least it is helping with the seizures.
The lovely people in this area where we live have organized a benefit for Quinn on July 14th. I am so amazed and thankful for all the support we get from everyone around here with everything that has gone on and is still happening !

Part 2

We went home on Thursday night after me begging to go home because I was hoping Quinn would do better in a home environment. He came home with the feeding tube so in case he didn't eat I could feed him through the tube. He is also getting his meds through the tube for now because that is one less battle for me to fight right now. Thursday night he ate all his *food* an same with Friday until night time... then he threw up. Saturday he refused to eat all day so I had to tube feed him all day.
So I am just so frustrated, exhausted, ready to quit life at this point. It seems whenever things are starting to look up just a little everything goes crappy again. I am missing the girls soooo much an cant wait for them to come home. BUT honestly have no clue how I am going to do this when they are home since Quinn takes all my time. I don't even have time to me to eat never mind take care of the girls. My day goes like this... Up with Quinn, help Quinn through some seizures, measure and weigh food, prepare food... beg Quinn to eat it. Then an hour later end up making him stuff for a tube feed which needs to be weighed out ( since he didn't eat anything). Then I measure out all meds and have to give the meds, deal with a few more seizures. Play with Quinn a little bit and then back to trying to make a *meal* an get Quinn to eat again.....
OK now into the selfish rant ... ;)
I am tired, exhausted, just cry at the drop of a hat. Wonder how I am going to get through the next hour, angry, annoyed, sad and just not understanding WHY. It is just soooooo hard to go 3 years with a healthy normal boy and then in 10 weeks reach the point we are at with a not to positive future. I have no clue how to accept this and be happy with this because honestly I hate this. I was a negative person before this all and not a happy smiling lalalalala person like some people. SO how to deal with this...It seems like there is a crappy surprise around every corner. We have to fight for everything for Quinn, everything is a battle. From his meds not being covered to waiting lists to him not eating.. the list goes on. I try SOOOO hard to think of positive things about this situation and I cant find too many. I am sad and angry every time I go out and see people with healthy children.... they have no idea how blessed and lucky they are. I am angry and annoyed at all the adult people that just stare at Quinn whenever we go out because of his feeding tube... Just ask me something instead of staring and more staring ! I am angry and sad that my poor boy has to go through pain each day and frustrations. That he has to hit his head several times  a day and he can't do the things he used too. It hurts me so badly when he says Mom lets make cookies or mom I want toast... and he can't have any of that. Long story short... I am hurting, sad, angry and frustrated. I really am trying to be happy because I hate feeling like this. But whenever Quinn has a few good moments and I start to think we can do think then everything comes crashing down....
Now off to start my day with begging Quinn to eat something....and trying to convince him we aren't poisoning him !

Hardest week of my life to date ..Part 1

Well what a week ! It was a huge roller coaster of emotions that is for sure. We went into the hospital on Monday and it wasn't a great start to the week. Soon as we got there nobody seemed to know where to send us or what was going on. It was very frustrating as we sat just waiting for almost an hour to find out where we were going. Finally we get up to his room and start to settle in, then we went downstairs to get the EEG wires hooked up to Quinn's head. Then back upstairs to our room and we had to wait to get Quinn hooked up to the EEG equipment. Once hooked up he was confined to his bed for a day an half. We had to sleep the night with all the lights on in the bedroom because this EEG was monitored by video. Nothing like being watched for a day and half haha.. made sure to do no nose picking or wedgie picking. Quinn cried most of the night because the wires were digging into his head and hurting. So I got about 2 hours sleep combined over 2 days so I was feeling quite drained. Quinn kept asking for pizza and pizza and I had to keep explaining there was no pizza coming. He instead had to drink with a straw this gross Ketocal shake, just the smell was enough to make me gag ! The poor boy managed to get 3 shakes down that day. Tues came around and blood work started at 630am, they took 7 tubes that morning. His first *meal* also arrived with was a cold rubbery half egg hard boiled, spoon of marg, spoon of mayo, some liquid whipping cream and a couple little carrots. He ate the egg and started eating a carrot and the throwing up began and the refusing of meds. I couldn't blame the poor boy , his food was disgusting an they can't prepare it different at the hospital because they are very limited with what they can do. So he didn't eat anything all day, we finally got him to drink a bit of shake that night which stayed down. Then Wednesday he starting throwing everything up again and refusing meds and food. So we had to go the tube route.... this was horrifying. Poor boy ! BUT he is such a brave little man and rarely cries. He just did a lot of whimpering and kicking while they had to pin him and put the tube down. He also had to have his blood sugar tested every 2 hours since Tues., so his poor fingers were quite beat up. Wednesday they did more blood work and took 3 tubes this time. We met with the genetics team on Tues evening and gave them all the details they wanted. So it will be about a month before we hear from them again. Our ped neuro told me on Tues he thinks it looks like progressive myoclonic epilepsy which isn't good news but I am not thinking about that right now since I live hour by hour and day by day. Because if I think of the future and what may happen I lose it ! More testing will be done and he also is considering doing a skin biopsy on Quinn an he would need to be sedated again for that. Wednesday a specialist in eyes came to look behind Quinn's eyes to see if there was damage done from the seizures or if this is a concern. The good news is for now Quinn's eye sight is perfect and healthy ! On Wednesday we also go moved out of the private room into a shared room with a 10 year old boy with Cystic Fibrosis. Quinn also got moved into a closed off crib so he wouldn't fall out and hit his head on the concrete with a seizure. This made it easier for me because I could actually leave for 5 mins to go pee or get a nurse to come check something out.
Will continue in another post...