Day by day

How does a person not get frustrated an sad when they have to watch their little boy suffer with seizures all day long and continually get hurt over and over ? When medications fail to control his seizures, when Dr's just raise their shoulders and say we don't know.... When this has been going on for 9.5 months and your little boy has only gone 6 days with no seizures out of them 9.5 months. When your little boy is now occurring brain damage because of all his seizures, but we aren't sure of all the damage yet. Having to watch your child choke on food because eating which we all take for granted if made more difficult by seizures . Quinn chokes a lot on his food because he goes into a absence seizure or drop seizure while eating. When a person has to beg for drug coverage for your little child because the province and insurance don't want to cover the cost, but abortions are covered by health care. As parents making sacrifice after sacrifice for your child and your family trying to do what you think is best for everyone. As a mother trying not to feel guilt for not being able to protect and make your child feel better and also in the back of your mind always feeling guilty that maybe I did something wrong when I was pregnant or when he was little that caused this cruel disease.
We all face challenges in life... I just don't understand why some challenges are just so much more challenging. Sometimes I wonder if its because my children are the world to me and the most precious to me.  Maybe its to learn how to be self less, learn humility, learn grate fullness, learn compassion, and learn to love no matter what. To teach that things/stuff don't really matter in life, health is what is craved and longed for and in the end all that matters is family and love.  Something I have also learned through this all is in the end what really matters ??  Not redecorating your house, debating where to go for your next vacation, planning your next party or event, worrying about what OTHER people think of you and your life. I still struggle with most of these things in my life though. Not that I have a chance to do most of them :) I have lost a lot of friends ( not that I had a lot in the beginning haha ), I guess lost may not be exactly the right term but people get sick of hearing about Quinn, nothing ever really changes in my life it is always about Quinn and the next drug, seizures and more seizures. So the phone calls have lessened and almost stopped, I sometimes wonder why I have a phone then I remember yes to call 911 if needed and text the few people in my life :) It is also hard myself to be friends with people with healthy children. It is so hard to relate to them and I end up jealous of their healthy children and easier life. I wish I had the problems they complain about.
So I guess I still don't know how to answer my questions I asked :) Hence taking it day by day and realizing that there are some people out there that do care, some that show they care more and others weren't meant to be in our lives.

Some of the sad side affects of medications...

I have been thinking of writing this post for just over a week but lack of time and words to express myself have been preventing it from happening.
The past several weeks Q's aggression, temper, compulsiveness and obsession has become worse then it was before. This is really hard to talk about as he is my sweet little boy and it hurts to say bad things about him but awareness needs to be made. Also I know under that all is my little Q and it makes me so sad to see my little boy suffer.
Just so you all know we have been trying to get Q into a Child Psychiatric Dr for months because of his behavior which has just intensified. Finally last week I got all the forms to fill out for Quinn (about 16 papers) and then we still need to wait months for an appointment. It hurts me to know all the children needing help for their well being and others well being and our system is failing them all. Then we wonder why why why does a child/young adult go to extreme measures like a school shooting/ murder suicide and etc. I am in no way saying their behavior is acceptable so please don't think that. It just hurts me to know all these children needed help and we aren't providing the mental help needed.  It is time to open our eyes and see that these children are crying out for help and they ( most of the time) aren't mentally well and can't control their actions to a certain extent.
We have had to hide our knives and sharp objects this month in our home after several incidents with Q. One involved a cat and him having a butcher knife to the cat's neck I managed to get the knife away and the cat was unharmed. This is extremely hard to me to talk about to the public world as it makes me very sad for my little boy and I know it also horrifies people. This is just one incident out of several. Q's sleeping patterns are also very disturbed these last few weeks. He doesn't rest well at all and the other night was up from 11pm-5am yelling,screaming and twitching. The best way to describe the way he was is like an addict on a high or coming off a high.... I could not control him or calm him down. The girls end up waking up and also being up all night because of the noise. It is so sad to see my little boy go through something so awful and I can't help him or take away what is bothering him. He also daily throws his food/drinks across the home resulting in a huge mess. The littlest thing will set him off and he will have total temper meltdown. It could be the cereal not sitting right on his spoon or the cup is in the wrong spot. This makes it very difficult to keep up with housework as I am just continually cleaning up after Q. He also becomes physical with myself with everything from biting to punching. I just Thank God he is only 40lbs and not quite 4 years old because I don't know what I would do if he was bigger and older.
Bottom line is Q needs help... mental help and we don't know how much damage the seizures have caused to his brain ( which could be causing some of this) or if the medications are causing the issues. The only thing that keeps me going is knowing he is still my little man and he does still have some sweet loving moments.
My plea is ... please don't judge people with mental health problems or seem to be acting out ( and blaming it on bad parenting/etc ( some cases it may be) ). These children and adults aren't well and we need to accept that and find help for them. We need more resources available and more public awareness. People shouldn't feel ashamed about mental health problems and other shouldn't think they just need to suck it up or in some extreme cases believing it is a sin and people should just be able to get over it.
I LOVE my little man so much and wouldn't trade him for anything :)

Unknown hazards of drop seizures

Drop seizures..... they happen anytime, anywhere, no warning... I wish for this reason I could build a home fit for Quinn. A home that is built for a little boy who will only get hurt more as he gets taller and bigger. 
Most people don't even know all the common hazards for Quinn with his drop seizures. Here are some examples of things/items that can hurt Quinn.
-Forks
-Pencils/pencil crayons
-anything sharp or with a blunt edge that could puncture when he has a drop seizure
-Water ( when he has a bath we have to hold him because if he has a drop in the tub ( which he has) he goes under the water an sucks the water into his lungs).
He also chokes on his food when he has a drop seizure and he is eating. There is so much more to this horrible disease he has that people don't think of.
I truly wish I had a bubble of some sort to put him in. He doesn't understand why he can't do some things or needs to wear a helmet. We have be fighting with him to wear his helmet all the time lately because he says NO mom I don't have seizure. Then of course he does and gets hurt all over again.
Quinn is constantly hurting his legs,arms and body as when he has a drop seizure he just falls on whatever and where ever. So he just goes limp, falls and hurts his legs and arms because of falling in weird positions. He is covered in bruises all over his little body from falls.
It is so frustrating to hear all the Dr's say... well we don't know why this happens or what to do to control the seizures because everything that has been done doesn't help.
Last night we made a trip to emergency because he had a drop seizure into the corner of a filing cabinet in the house. He was bleeding a lot and we decided to bring him in because we figured it would need stitches. The Dr decided no to stitches because the laceration was to close to his eye and it had stopped bleeding. So they bandaged him up and we headed home. This is a typical day in our lives and his poor sisters have had to adjust as well. They know the drill and know what to do.... last night Brooke ran to get me a cloth that she has made wet in the water for Quinn's cut without me even asking. But this also weighs on them and they get so frustrated with how Quinn gets all the attention.
Here is praying for a good week free from emergency visits and that Quinn's little angels worked extra hard this week to protect him :) ps ... they do a pretty darn good job in my opinion

Our obession with *stuff*

This morning I posted a comment on a facebook page where people were talking about how the parking lots at Walmart and other stores were FULL for Canadian Black Friday sales.  My comment was " I can't believe how greedy people are with things, maybe we should all be sent to a 3rd world country and see if that would change society ways of thinking"
WOWZERS did I ever get thrown under the bus on this page... The negative comments just started pouring in on my post. Now I am not saying I am ANY better then these people. I'm not I am just obsessed with stuff as much as other people. So next time I will clarify my comment more and state I am thinking of the people that load their carts with toys and things they don't need.
This year has been life changing for us due to Quinn's health problems. It really puts things into perspective for us. Stuff isn't important even though I do like stuff. ( Like my Keurig which was an early Christmas present from Kevin and kids). I am all for saving money and getting great deals. But do kids really need another toy ? Do we really need that other Tv ?
I challenge everyone this Christmas to really think of stuff and how much we buy and give. I know this year I will be doing a lot of homemade gifts ( sorry people if you don't like homemade lol) because home made gifts mean so much more to me. Our kids will get 1 toy each and 1 clothing item from Kevin and I.
We are so blessed to live here in Canada were we have heat,water,food and way more possessions when we could ever need.
What is important to you this Christmas ? Also what are you Thankful for ?
We have so much to be thankful for and I pray we all can see that more and realize what is important in life :)

Ups/downs and mooning

Life is back to normal ( for now) around here ! Except that Kevin is gone which isn't normal and really hard for me to adjust too.
Quinn is back to his crazy self... energy has returned with vengeance to make up for the few days he was out of commission ! This morning I walked into my living room to see him standing on the bench in my bay window with his undies pull down and butt cheeks to the window mooning the school bus picking up the girls.  BOYS.... seriously would a little girl think hmmm I am going to show the world my butt ?? Thankfully Quinn is 3.5 and it is still somewhat funny !
Quinn had a day free of seizures !!! This is only the second time this has happened since March when he first started having seizures.  This is so amazing but of course I'm still on edge waiting for one to happen because that is the way our lives have been since March. Praying for another seizure free day tomorrow ! Not sure if the change in his medications is helping the seizures or if it is something else.
This morning was a rough go for me ( could have been I was just so exhausted from Quinn being up at 430am in the mornings), when I don't get proper sleep ( enough) I start to worry and stress. Them two evils we taking me over this morning. I know I can't control anything with our home selling or people looking at it. I just really wish it would sell already or SOMEONE look at it ! We did have the one showing a couple weeks ago but nothing came of that. Being alone with the kids is extremely hard, emotionally and mentally. Because Quinn has so many needs he takes way more of my energy then I already have then I have the girls also. All hell broke loose this morning... since Quinn was up at 430am the girls got up at 5am.... then the fighting started and screaming. Brooke refusing to go to school, the girls mad at me because they don't like the lunch I'm packing for them. Quinn yelling and throwing his breakfast because as soon as I give him what he wants for breakfast he doesn't want it anymore or its yucky and he will throw it across the room if I don't get to his highchair quick enough. Oh and to boot my coffee pot is not working like it should and coffee isn't that easy to come by. ( Really hope Santa brings me a Keurig for Christmas). Then there is Emma screaming at me because her clothes don't fit OK and they are to tight ( when they aren't) ( yes I could be thankful she wants to wear loose fitting clothes and I am). All this before 7am..... and then all hell breaks loose again at 330pm :)
So I crave the day when I can shower alone... pee alone...do anything alone... but then the realty hits that we aren't a normal family... we have a special needs child who most likely will always need 24/7 care and can't be alone. He may not have had seizures today which is amazing but he still needs help with everything from walking to getting a drink ( his balance is always off so he falls really easy and spills everything), his needs his diapers changed several times throughout the day and I have to try and understand him when he talks to me ( because his speech is somewhat slurred and hard to understand due to the seizures and brain damage).
But back to ONE DAY AT A TIME... It is just a really hard to thing accept. Other moms are taking about working out, going for a run, going shopping, getting their hair done, going back to work and these aren't things I get to do anymore. Our lives revolve around Quinn and his needs. Our needs are last and rarely happen.
I have to always remember this saying I read several months ago.... What screws us up most in life is the picture in our head of how it is supposed to be !
Someday peace will come and until then I just need to get them big girl panties on ;)

When all else fails ...SMILE !! :)

It has been a long time since my last post ! Things are always changing in our household it seems. Last month we found out we will be moving back to Alberta ! We made this choice because Quinn needs access to better health care since his condition is so unknown and Edmonton has more specialists then Saskatoon does. Also because I need my mommma... :)
So Kevin is already living in Alberta and working and I get to be a single mom til our acreage sells !! Then I move to Alberta with the kids, dogs and cats... oh and all our stuff.
Quinn meet with genetics specialist in Edmonton on Friday and they talked to us and said they feel Quinn doesn't have a treatable condition and they don't know what this is or why. They took a lot of blood for blood work and are going to take his DNA apart to see if they can find some missing links and etc. This process will take about a year to complete.  Quinn started to feel sick with a fever on Thursday last week... yesterday he had an EEG appointment and meeting with the peds neuro Dr and they suggested we bring him down to Emerg since we were in the hospital anyways. After listening to Quinn and checking him out they decided to run some x rays and blood work ( the blood work was horrible because all this veins are blown out from last weeks blood work but after 10 mins of us pinning him down and him screaming they finally found a vein that would work). They decided he has pneumonia and also found a heart murmur ! Go figure eh....They first wanted to determine that the murmur wasn't being caused from the pneumonia and it wasn't thank goodness ! So they treated him for the pneumonia and we will deal with the heart murmur later. During our 6.5 hours in the hospital Brooke who was with us was amazing..... she rarely tested my nerves... she must have known mommy was stressed out !! Also I am sick too so that doesn't help my nerves. 
So little things to be thankful for.... I am listing 10 but there is a lot more :)
1)  I am thankful the heart murmur isn't as severe as they thought...
2) Popsicles from the ER nurses for Brooke and Quinn.... they were a lifesaver !!
3) The little treat bag that Dr Gamble gave to the kids from the Starlight Foundation !
4) For Christine ( Emma's bus driver) that took Emma home after school and watched her for him until 7pm when we were out of the hospital.
5)For Dr. Cattell's comment of  OH I remember you ... you and your husband are such calm people and are just amazingly calm. ( from all the ER visits we have made with Quinn).
6) For the strength and courage to once again hold my little man down again as they try to find a vein to get blood from for blood work... holding your little one down never gets easier ( as you try to convince them you are doing this to help them).
7) For the nice Pharmacist at Walmart who said... you are still smiling through this all and I don't know why... my reply.... SMILE and smiling help everything when you don't know what else to do... SMILE lol... ;)
8) Quinn keeping his meds down after me having to put them in his mouth and hold his mouth closed... poor little guy is getting so strong and it hurts as a momma to have to pin your child down :(
9) Great report cards from the girlies from school !!
10) Quinn eating a slice of ham at supper tonight,.... first food in 5 days !!!!

Brain overload...

How did it get to be Aug already ?? My little girl turned 5 yesterday, still trying to figure out where time has gone. It was an ok day, tried my best to make it fun for her but Quinn was having a bad day and Emma has really been acting out lately. Emma is really upset at how Quinn gets EVERYTHING and gets whatever he wants  ( in Emma's words). Quinn's condition is really starting to affect the girls an I wish I knew what to do or what to say. They love their brother but are sick and tired of our lives revolving around Quinn seizures and Quinn's eating. I am sick and tired of it too.... but I know it isn't Quinn's fault and that is the only thing getting me through this right now. Even though it feels like a endless dark tunnel we are walking through with no exit. I love that little boy so much an still feel so helpless and blame myself for not being able to help/fix him and what I could have done that might have caused this.  I still feel like a failure as a parent and pretty much cry myself to sleep every night as I look at this little boy laying beside me and I am helpless.  It is horrible to feel so much guilt as a parent and wonder what you did that may have caused this.  Then added to that is the stress of life and everyday.
I was reading the other week something that is so true for me . Here it is....You become your child's case coordinator,nurse,therapist and advocate. You learn psychological jargon, medical procedures, and teaching skills. While coping with exhaustion and frustration, you learn stamina. You care for your children with disabilities without formal training and with limited recognition and support from the community.
So yes I feel over whelmed... I have learned how to do things nurses should be doing but I am his nurse. I care for him 24/7 and still have the job of cleaning and taking care of the house. Also have 2 other children to watch and care for.
One of the worst thing people can say to me right now is.... Oh well other people go through things like this too or other people have to go through trials... THAT makes me want to punch you in the face lol... That does NOT help at all...Just please lend a listening ear and feel my pain instead of trying to make me feel like lots of other people go through things.
Another topic... Married with Special Needs Children....... WELL you think your marriage is tough ... add a special needs child to that. I am reading the book right now which is helpful.  Your marriage takes its toll and its a fight to get through everyday. You don't see eye to eye and you are both left exhausted all the time mentally and emotionally.
Today Quinn has his neuro Dr appointment... will be bringing the 2 girls with since Kevin is working. Should be interesting ! I have a hard enough time focusing when they aren't there !Hence my brain being on overload all the time...
Shall keep you posted !

Attempting to get through another week

Another week has gone by an now another is starting.... I really wish I could wake up every morning happy go lucky and ready to take on the day. But no everyday I dread waking up, dread the day and wonder how I am going to get through the day and week. Everyday is the same old seizures, fighting with Quinn about food and trying to get Quinn to eat. Then on top of that all Quinn yelling at me, biting me when he is frustrated and trying to run away or hide. Then finally they all go to bed and I get an hour of no stress or watching Quinn like a hawk... go to sleep and don't want to wake up til tomorrow because then it will all start again. Life of a mom to a special needs child is sure not a walk in the park.... I am struggling so much with this because I don't have the patience to get through everyday. I am fighting to get through every 5 mins, I feel trapped in this life of downs. It seems we always get bad news about Quinn. His seizure count is up again, his daily movements like using his hands has gone downhill... he is always very shaky. I am trying everything I possibly can to help him and nothing seems to be working. So trying to stay positive isn't easy. This morning I have to attempt to get groceries with the 3 kids ... this itself is a challenge with Quinn being on his diet. I will be ready to cry by the time I leave the store as Quinn will screaming because he can't have the food.
When will this get easier ? Or bearable....
Life sure isn't what you plan or expect !

Blah blah blah blah....

Hard to believe it has been a few week since my last post ! I really wish time would go back to normal for us.. it is still like we are in a time machine and its on hold in March. But in reality it is middle of July and summer is half gone.
Quinn has been on the Keto diet for over 7 weeks now, things aren't going wonderful yet with the food. He is still fighting the food diet even though I have spent hours coming up with new recipes and trying to make some foods he likes. This is very frustrating for me as I put so much effort into this and it seems like it is all for nothing. Yes the diet is helping control some of the seizures but Quinn is still having around 10-15 drop seizures a day and several absence seizures. Tonight he also snuck a whole cookie which is like really bad.... so now we need to be prepared for bad seizures over the next few days. I am in a tough situation... I as his mother want to do everything I can to help him and control his seizures. The diet is helping to control some and it does work somewhat. But I am frazzled, exhausted and feel like all I do is spend the day in the kitchen. So my choices are  I choose to make my life a bit easier and stop the diet. Which gives me some freedom to not be in the kitchen all the time an having to watch him like a hawk around food and listen to him cry, scream and fight for food. OR stay on the diet and control some of his seizures so his brain damage isn't as bad... What great choices !! Sigh.... I have been so torn on this since we first started the diet. I wanted the diet to work so badly an it does but not 100%. So I choose for me to be selfish or me fight to get through everyday. Such a hard hard choice and I just have no clue what to do. I am a horrible mother if I stop the diet because I fail to provide what I can to control his seizures to some extent.
The girls came back on Saturday, wow is life way more busy with them around ! My kitchen time is even more and the noise level in the house is LOUD. Lots more fighting since they have each other to fight with ! Brooke and Emma pushing every boundary they can with me and me not having the energy to fight with them. Yes this is sounding like a pity party isnt it... I just feel the last 2 day I have so much on my plate and I can handle this with just Quinn but when the girls are here its too much. So I have to figure out how to manage this and how we are going to do this. Honestly I can't wait for school to start because Emma will be in school 5 days a week and Brooke will be in Kindergarten. I love them all to death but this momma just can't be superwoman.
Speaking of superwoman... I still have letters to write to the hospital, MLA and public affairs in regards to Quinn's health and the lack of health care available in SK. Hopefully I can get to that by the end of the month.
This past Saturday the community held the benefit for Quinn. It was an amazing night and lots of fun for the kids ! Sunday I was still feeling great and so uplifted by the community and everyone who showed their support. BUT then Monday came haha.... I still feel very supported don't get me wrong... I just was beginning to feel like superwoman over the weekend because I was so calm, under control, never shed a tear when talking about Quinn and his condition. Then that all came crashing down on Monday !! I realized I'm not superwoman... and sometimes I don't even know how I am going to get through the day.
But I am a very good actress apparently and put on an amazing front to everyone I meet. In private that is completely changed and I don't even seem to know how to get dressed or tie shoes ! My life is consumed by Quinn's diet, seizures, his medical condition, me reading books on brain stuff ( yes stuff lol bc my brain is fried right now).
Ok enough about that.... some news that does make me happy though is that finally after 2 years we will most likely have PUPPIES in 8-9 weeks !!!!!! SOOOOOOOOOOO excited !!!!!! I witnessed 2 ties in the last 2 days between Aerielle and Sebastian. My poor children are horrified by how babies get into tummies now but oh well.... easy facts of life lesson haha..
Another subject I wanted to bring up... On Sunday in church I listened to a message that really hit me...  It was about sins that other people don't see. Made me really think about how I have so many built up, wrong feelings.... I have been struggling so much with the following feelings since Quinn got sick.  Envy and jealousy towards people with healthy children, Anger towards this disease and sickness and why us.
I am exhausted of fighting for Quinn health all the time, fighting for every appointment, hounding Dr's and nurses to get things done. Yet somehow I will keep going on not sure how but don't really have a choice in the matter !

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...

My dislike of cell phones.. among other things

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 !

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 !

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 !

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 :)

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 !!

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 !

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.

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 !!

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...

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....

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 !

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 :)

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 !

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 !