You're not going to believe this...

Yes that is Samuel...

yes he is in a hospital... again

Yes it is an xray machine

No he is not there due to a seizure.

Well it is a funny story.... 

no not funny HaHa...

Funny as in OMGosh seriously!?

So here is the story:

Tuesday night we were at football practice (yes Sam is still participating with the team-- he is helping with training and where ever else he can) He was playing catch with the quarterback -- who broke his arm this summer in 2 places). Sam jumped up to catch a pass and he came down on a 1X1square inch pipe that is on the inside of the school track and he rolled on his ankle. Immediately Sam ankle swelled and it looked like a golf ball was under the skin of his ankle.  Another mom and I walked with Sam over to the hospital (ironically another player on the team was at the practice who had some crutches that Sam used).  By the time we were done with xrays and were seeing our doctor (we were lucky he was on call) the golf ball had grown to a tennis ball...

The doctor looked at the xrays and put Sams leg in a 1/2 cast. Sam had to use the crutches for a day and then use them only to help him put weight on the foot. If he was not able to put his full weight on it by Friday (which was yesterday) then we needed to go back to the doctor because it might be fractured. If he was able to put weight on it I was remove the 1/2 cast and rewrap the ankle with a tensor bandage. These are all the lovely colours of his ankle once we removed the cast....

It was not fractured!! YAY!

Land of Confusion...

After yesterdays trip into the city, I can say I am now totally confused about ....

well...

everything.

I thot I had a grip on a lot of it after our first appt. with ESAM (Epilepsy & Seizure Association of Manitoba). Phyllis spoke to us and made both Dennis and I feel like we werent crazy about all that we have seen over the last 3 years! She agreed that Sam probably HAS been having AT LEAST partial seizures all along (since his accident in 2008). She told us that the shaking of his arms and legs are all partial seizures. She told us that we will need to make an IEP (Individual Education Plan) for him at school  so that it works with his seizure activity. Phyllis offered to come to the school meeting for this to help us to get the teachers to understand that this is SERIOUS and not just us.
We also learned that with dietary changes we can work on reducing the seizures. Adding a few things to everyones diet and eliminating other things will help Sm and give him the support needed. (this is going to be a tricky one since he IS 15 and knows everything... and does NOT want to lose the sugar and salt from his diet!)
I had done a bit of research before going in to talk with ESAM and found out that there are service dogs available for people with epilepsy. The dog can be trained to do quite a few things like getting help, alerting Sam to a seizure coming, keeping him safe during a seizure. So I asked about this and Phyllis said "YES! Start that process now! It is a 2-3 yr process to get a service dog so start now!" (side note -- if someone would have listened to me in the last almost 3 years we could have almost been to that point of receiving a dog -- **sigh** but I am over it now!lol) So I am going to be busy on the phone with the local Lions Club to see about getting it all started.  They can help to get the funding for this around $22,000.00 for the dog!
So after over an hour talking with ESAM and learning all we did and collecting a TON of info to bring home to read ... we left for our doctor appt. with the ped....

That where things went a bit ... out of my loop.

We were talking with the Dr. and he seemed a bit put off that we had been to ESAM. (too bad for him) and then when we asked for a referral to an adult neurologist -- these 2 are also epileptologists who are specialized neurologists (and I gave him the names of the 2 we would like to see -- names we got from ESAM) he seemed a tad miffed that we were calling shots. (again too bad for him) When I tried to ask WHY we have not see a neurologist he never really answered me. He was not too concerned with Sam's partial seizures or helping us to get things set on a more seizure free path-- other than taking his meds. (which are now up'd) Sam has also been sundowning much more earlier than in the past 3 years now that he is on these meds and even more so now that they have increased the levels. So he DID tell us to switch up the dosages t 3X a day instead of 2. (he will take 2pills 3X daily instead of 3 pills 2Xdaily) and he hopes that will help with that issue.
We informed the doc that we had not heard from the neuropsych yet or the sleep lab and he basically seemed to indicate it was out of his hands...but he did get me their number to call and see where things are going with those areas.
He finally agreed to send a referral to our first choice of neuro/epilep but warned us that if Sam has another seizure we will we sent to Wpg and they will put him in to the Childrens Hosp. and we will see a ped. neurologist.

When we left the doctors office I was more confused and frustrated... but I am praying that NOW finally things are moving in a right direction.

We had a very unexpected phone call when we got home from Winnipeg but right now I can't say anything about it as I am not sure what it will all do or not do for us...

Appointments galore

so now we begin a week of running to Winnipeg and Brandon -- ct scan, paediatrician appointment, eye doctor, orthodontist and no school. Thankfully it is a short week and so Sam is only missing 3 days.
I am trying to do some research on seizures and can only seem to come up with epilepsy info. I have read that if there is no reason for the seizure the diagnosis will be epilepsy, but otherwise will it all be down to the brain injury?
After talking with Sam a bit and thinking back there have been mornings where he has woken up very tired and sore, with a slight headache... were they petite mal seizures? Maybe he doesnt have an apnea issue with sleep... maybe it has been smaller seizures going undetected the last 2.5 yrs...Will they be able to tell on the ct scans if he has had more than one? Will Dr. G do an EEG? was this seizure a one time thing or will there be more? will he be on meds now? if so what else can he be on other than dilantin since he has an allergy to it? Will we know what the triggers are if they continue? If there are no real triggers what about a service dog to help him to be prepared for one?
I know there all seem so silly to think about but I am so tired of being blind sided with new 'developments'. I am tired of ME looking for the answers and the doctors seeming to 'not worry'.
My body is tired and so is my brain. I am so emotionally and physically spent right now ... I am trying to stay strong but for how long?
I was just thinking last week how now I was able to get back to spending more time with ALL our kids and not just seeming to be focusing on Sam. I was planning on spending time each week with each one on our own. Getting back to being the mom I used to be, but now I am not only NOT there, I am a huge leap backwards. I am feeling more like a loser and a failure as a mom at every turn these days.
I cant seem to get enough done in a day to do what needs to be done-- forget about bonding with my other children...or anyone for that matter

Hormones, attitudes and cabins.... oh my

Well we have been and gone to Wpg for Sam's psych eval and all is good. Things are normal the doctor figured and there is no need to worry about PTSD with him. There were a few areas that she was looking at and Sam was dealing with things in those areas very well.
1. He is able to talk about the accident.
2. He is able to shoot a gun again.
3. He is able to watch movies and not get agitated with violence or certain scenes.
4. He is not suffering from nightmares.

But it was suggested that Josh goes for some counselling. So now to talk to him about it and see how things are with him. He seems to be handling things ok but Dr.Sam thinks it would be good to just be sure.
We have to go back to see her in Oct when we take Sam in for his (hopefully last) appointment with the neurologist--Dr.Goldberg, just so she can talkto how he is handling the new school routine (Sam will be in highschool) and see that things are still progressing smoothly.

Things here otherwise right now are good...but saddly i have to admit it is because Sam is not here. He is at grandma and grandpas until Wed. I hate saying that, but it is true. there is no stress about if he is in a good mood or just in a mood. he has taken to being fairly miserable with me of late and picking fights with the other kids. We have gotten his days somewhat organized to the point of daily chores and wake up times break times but he is still 'out of sorts'.
But then add to this that Hannah is starting to hit puberty and the hormones are kicking in with her. Somedays I really wonder if I will survive this motherhood thing. If it isnt Sam having one of his moments, it is Hannah with hers! Girls are most definitely different from boys! I am going to be having to sit down with her soon to have the 'talk' about 'gurl stuff'.

I am not sure what is going on with me lately either-- i am back to somethings sitting there just under the surface. I cant pinpoint it but there is something there...might just be exhaustion, or frustration... it is just that feeling of a blanket over my head and not quite up to speed on anything...always a few steps behind everyone. Not exactly getting the punchlines... i have been praying about it but nothing so far in the way of enlightenment OR of it going away.

Dennis has booked a night in Winnipeg when we are in for the Rod Stewart concert and then he also booked us 2 nights at a cabin in the Whiteshell Provincial Park for our anniversary. No kids, no work, no phones, no nothing for 3 whole days! Just me, Dennis, a cabin and one night of Rod Stewart!! Our anniversary is July 31 but we will be busy with kids and company so we just postponed it until Aug 17-20. Last year we were in Wpg with Sam and the best gift ever was him waking up in PICU and asking if i brought him a coffee... lol nothing will ever top that but this year will be great too ... 16 yrs!

when can i be dad...

tomorrow morning sam and i are on the road again to winnipeg for another psych eval. for him. he is not too impressed with this and this last week (all two days of it) he has been just miserable with me for the most part whenever i talk about the wpg trip.
i picked the boys(josh and sam) up from my moms yesterday and for the first hour everything was good, then the good mood stopped and the miserable, grouchy, unliveable side arrived. he was mouthy, rude, disrespectful and extremely foul mood-ed ( i know there is no word-- but nothing else would work). and it was one of those literally blindsided moods that when they hit they are totally shocking and unexpected (hence the blindsiding) and they turn the whole house on its ends. i just couldnt wait for dennis to get home from work and (being extremely honest here) was ready to ship him off to anywhere--then i looked at him and saw the fatigue. then the guilt set in... but frustration also did...how come the fatigue was 'saved' for me and not for granni?! how come i get to be the dumping ground for everyones garbage?how come even tho i am the one going to bat for them (and of course it isnt just sam here) and trying to make sure they get good times and happy memories ... i get the crap attitudes. dad gets a bit too--but i get the major brunt. makes me wish i was the dad some days!
and now i get the job of getting sam up early (6am to be on the road for 6.45), driving to winnipeg and then taking him to the doctor and keeping him on an even keel and in good spirits.

sigh