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 !