I am about due...

It has taken me over a week to write this post and actually post it ...

I have been debating with myself again (as I am prone to do alot in this journey apparently) of whether I should post our new 'goings ons' or just leave it and hope that things change and get better...
I have wrote postings in my head a thousand times while driving my van, walking outside, washing dishes, laying in bed trying to sleep... (for the record those postings all sounded so interesting and so 'together', even eloquent, in my head -- nothing at all like I am sure this one will sound) but in the end I have always brushed them off and thought that it was not worth the time to pour out my thoughts and possibly shed the tears that sit behind my eyes ... again... lately. This is a post that I am scaed to actually publish because of the many 'nay sayers' (for lack of a better word) that have brushed off my concerns and worries with "oh that is just a normal teen/man thing -- dont worry he will grow out of it". People who do not know what it is to live with a survivor of a brain injury. People who do not know what it is to see the change but the rest of the world (this includes family and friends) does not. People who do not deal with the day to day issues that face not just a survivor but thier caregivers too. People who probably mean well but

Our Sam finished his grade 12 year in January and is now a high school Graduate!!! YAY!!! I am so proud of him for sticking it out and doing what he set out to do 5 years ago after his accident! His marks were for the most part ok some not so much but enough to pass.
Sam also turned 18 in December...

Enter the hormones, the know it all attitude, the "I am 18 and you can't stop me/tell me/make me's". Add to this his BI and the text book responses he is having to life and issues that pop up. I know if you dont life with a survivor you wouldnt know about some of these issues and you might be tempted (notice I said might be tempted to say to me or other caregivers) to say "oh that is just a teenager/man/husband thing that is so normal!"

Sam has a addiction I believe to his phone... ok that is normal teen behaviour. He also seems to be really addicted to texting
 (using his phone and apps on his phone) people he doesnt know. He sends pictures and I am prety sure he is sexting. Now that wouldnt be a big deal to some but when you see how it takes over his life you would be concerned. He never puts his phone down and charges it multiple times a day. We have asked him to be respectful of our rules but we get nothing from him but "yep ok" and then no action. He will rush to get work done (and not do it properly or at all!) so that he can get back to his phone. He doesn't pay attention to what is being said unless you make a point of forcing him to listen and repeat it back. I am seriously worried!

The past week or more he has asked for advice and when it is given to him he doesnt take it and actually does the complete opposite. He is planning  to move out in May to one of our homes but he doesnt seem to have the motivation to get the house ready (some minor mudding has been done - and there is some major cleaning needing to be done and a bit of painting now that he has mudded). He sits on his phone. He needs to save his money so he can  move out! ("rent" - which is really just the utilities -- and  groceries will be needed) but he doesnt save he spends, spends, spends the little bit of money he makes from his (at the moment)part time job. He will be starting a full time job in 2 weeks and that is going to be a whole new learning curve for him as it will be for a farmer-- so long hours (he is not used to and I am sure he hasnt explained his BI to the employer) -- enter his fatiguing, lost of equipment operating (enter NO CELL phone/texting) PLUS there is about a 45 minute drive to and from work! It will be 'interesting' (aka nerve wracking)!

Grandpa was going to give Sam 2 bred sows to raise to sell the piglets and we were all for it except Sam didnt save any money for the feed and has done nothing to get ready for these pigs. We bought all his feed last year for his pigs and we did a big part of his chores with them too and he got all the money for them... not a problem. BUT we told him to save some money for this years feed and to get set up for them and he has done nothing! We will be very short handed this summer on our own farm with work and wont have time to be running up to his place to look after his livestock and buying his feed! He is a bit pissed at us for this but what are we to do? He doesnt seem to get that once he is working for this new farmer he is not going to have the time or energy to look after more things than himself! We have tried to explain to him to try to enjoy being out on his own first. It will be a huge adjustment.  And still somehow we are the big jerks in this! We are not supporting him! We are not letting him live his life! And yet he doesnt see what can afford to keep our own farm business running AND support his!

He also seems to think that for whatever reason he has no responsiblity to us here on the farm when he is not working (4 hours a day a few times a week right now). We gave him a car (which will be transferred to his name when he moves out and we will pay a year of insurance for him), we give him a house to live in now (and in the near future!) we ask him to help with a few things and it is like pulling teeth! I know that is most teens but once they are done school you would think they would want to do whatever is necessary to get out on their own!?

Sam has also taken to drinking -- I am not sure to what degree but it scares me from the way he talks to his friends about what and how he will be drinking! He doesnt eat (he has lost a substantial amount of weight again), he rarely drinks water and his sleeping has been irratic again.  We are not so naive to think he wont ever drink -- we drink and allow the kids to drink in moderation here at home with us -- but he is setting himself up for the perfect storm... His driving has scared his brother with the speed and lack of concern for the passengers.


I am just so tired of fighting about everything with Sam about  what is said or done these days! I am struggling with my depression again and find it exhausting to hide it from everyone-- which I am sure I am failing at too.  I feel like a bad mom for wanting him to get out on his own so he can see what we are trying to do for him... I am so tired of always being the 'bad guy', the 'bitchy' one, the one who is there no matter what but always gets shit on...

I'm about due....

There is a lot to be said for bedside manner

...now if only 'our' neurologist had some! (and yes I said 'our' but I am using the term loosely)
Dennis and I had wonderful second opinion phone call last night with Dr. B from Winnipeg. He  helped us to understand what all might be the reasoning behind the sudden "you are being transferred to pediatrics' call we got yesterday.
Dr. B said that it could be that Dr. Y got a slap on the wrist from the EMU clinic for whatever the full reasoning was and is stepping us backwards to ped's because if when they send us to another clinic it will possibly be Dr. Y that we deal with (the epileptologist). Now we also learned that the reasons behind seeing Dr.Y are because Sam not only has epilepsy BUT he also has a brain injury (no kidding!?) so it complicates things a bit. Dr. B told us that he has met with Dr. Y before and has found him to be kurt and brusque so THAT was not our imagination (It could stem from personality to the fact that it is more of a social style from his native land of Russia.)

Anyway, we found out the answers to many MANY questions that have NEVER been answered for us in 3 years! This lovely doctor called us at 9.30 at night from his home, gave us  his home number and told us to keep him in the loop. If we can find out the name of the ped neuro. that we are going to be seeing he can try to pull a few strings and see about getting us fast tracked with them... but he said he honestly figures that we will be hearing from someone in the next week or so. (please pray for this!)

So basically after our initial phone call yesterday at 8.30am-ish, we went from wondering what the heck!? until 9.30pm last night where we were smiling and saying "ok, we get it. Still am not impressed with Dr.Y but we will live with this for now..." A lot can be said for bedside manner! You would think that they should teach bedside manner in 'doctor school' and you have to stick with the course until you get at least 80% or better in it. Just think of the stress from patients, families, friends, co-workers and everyone that could be elevated if ALL doctors would take 5 minutes to actually explain WHY they are doing something instead of acting as if they are God.

So yesterday was not a great day and it was not all related to Dr.Y...

Sam didnt start with a good morning (thank you topomax). Since this med was 'up'd' to 2 pills a day there has been a NOTICEABLE change in Sam's demeanor, so much so that I have been worrying about him. All this medicine, epilepsy and lack of quality of life I think are taking a toll on Sammi. He has been depressed and quiet, withdrawn and sullen. Major (more than before topomax) mood swings... it had been a very tough 5 days on the double dosage... so when I told Dr.Y he said to stop taking it. YAY!!! It is not working for him so get him off it! SO i spent time already this morning on the phone with the neuro psych trying to get our time with them arranged -- hopefully hear about it this afternoon!

 I spent most of the morning yesterday, til 2.45 on the phone with various people, doctors, answering machines, etc., so when I went to town for football I was intending to go to curves to work out. Then I was going for coffee with a friend. But for that to happen I had to 1.) be relaxed to work out and b.) leave the house by 2pm... neither was happening so there was no workout for me.
I had also intended to have a green tea when I met up with my friend.... but I had a large English Toffee with 1/4 coffee instead...sigh

Then I went to football where I met with Sam who was in a foul mood (again....still -- **cough** topomax) and was informed by him that he was NOT going to be involved with football next year if this is what it was going to be (here is the quality of life I was speaking about earlier)... basically him watching the team practice and then standing on the side lines during games -- but being sure to be included when the coaches and teacher were yelling at the boys.(I dont blame him) He is supposed to be earning a credit by helping with stats and doing what he is able to do to help with the team (throwing with quarterback, practicing snaps with centre, catching for kick off or kick returns, etc) but they coaches tend to miss this part of his marks...

I sure hope that things start to settle down for Sam and for us soon... I am tired and have a permanent headache and sore back/shoulders....

settling in for the ride

This week has been, I think, the busiest, craziest week we have ever had! 

Starting with that Saturday morning early rising and rushing to the hospital, followed by the looooong wait on SUnday morning for the doctor to give us our walking papers. Monday was at home trying to ‘relax’ as I called the school, cadets and family and filled them in with information on what was new. Answering calls from labs, doctor offices and hospitals...trying to make a bit of sense of the new developments and football practice after supper. Searching online for seizure information and research. Tuesday was spent on making 4 bags of raspberry jam (berries were taken out on Friday and were ready to go on Saturday), baking buns (to get a bit ahead on the buns for calving season), then a trip to Brandon for Sam’s ct scan (a 1.5 hour drive for a 3 minute appt @7.30pm!!). We made it back to Neepawa in time for Sam to go to Youth group -- which put us home after 10pm. 

Wednesday was an early morning getting everyone up and ready for school and to the bus. Once everyone was gone Sam and I started our trek to Winnipeg (a 2.5-3 hour drive) to see his pediatrician. 

It was in that appointment that I heard something that I have not heard from a doctor since this new journey began. It was that I, Jodi Ginter, Sam’s mom, his primary caregiver, the WOMAN WHO GAVE BIRTH TO HIM... was right about what I was thinking about his seizures. On Saturday as I sat and watched Sam sleep, I began to think and like a huge wave washing over me! Everything that we have been trying to tell the doctors and other professionals hit me like a brick wall. Joshua telling me that Sam had been thrashing in his sleep, the mornings of extreme tiredness, sore body, loss of short term memory.  The facial spasms, the twitchy left side movements, the blurry or fuzzy vision at times.The irrational irritability... The emotional rollercoaster... all of it. It was my A-HA moment. I was not crazy and I will admit it -- it was not MY failure, it was the medical fields. They would not listen to me. They ignored my concerns and my thots on Sam’s condition and issues.

SIGH! A huge sigh of relief that came over me! 

Then to hear the doctor actually say the words “Sam, I think your mom is right! She is definitely on to something here...” made my day in a way that I don’t know if anyone could ever realize!  Yes there was something more than just ‘sleep issues’ and ‘teendom’ that was at play here!

Thursday was another early rising day and off for the 1.5 hour drive to Brandon (this time tho I had Joshua driving!!!) for a 9am eye appointment. Sam’s eyes have been giving him some fun times. Blacking out vision (temporary blindness), foggy out looks, major blurring in one eye, trouble seeing words both far and near. Our eye doctor is fabulous and did a thorough check on Sam’s eyes and he did another field of vision test for added measure. It turns out that his eyes are still fairly 20/20 with a small change in one eye to far sightedness but not enough that we need to think glasses at this point. (YAY!!)  ANd his field of vision was awesome! This was all great news from one perspective but from another it was frustrating for Sam. This meant it was all brain activity and will continue and isnt going to be ‘fixed’ with glasses. 

We left the eye doctors and headed for our next appointment to the ortho (where we had gotten braces thinking that the ‘sleep issue’ could have been due to his severe over bite that he used to have!). Here Sam was given good news that his braces days are almost over!!! He is wearing one elastic at night now (as long as I can remember to remind him to wear it!) and hopefully by the summer his braces will be off!! I had one very happy boy after that appointment.

We left THAT appointment to head to the doctor about MY stomach issues. She was amazing! After hearing my history with my troubles that followed all the ‘wonderful’ tests I have had to have, she decided to leave well enough alone until a time when it gets worse again and I have cause to see her or take medicine!!! Hallelujah!!! Dont fix what aint broken!! WOOT!  She asked about stress in  my life and after a quick thot of my last 2.5 yrs and a giggle I gave her a very short and sweet version of my ‘stresses’. She sat and listened, her jaw dropped and I got a wonderful compliment from a doctor. She told me “I am a firm believer in that parents KNOW their kids and we need to listen to them! Keep it up!” 

I wont lie... I wanted to hug her! I wanted to record her so I could play it to other doctors in the future! lol 

I finished with the doctor, went for some blood tests then the boys and I headed to the mall for some lunch...

and a phone call came thru...

It was the G.I Unit at the Brandon Hospital and if Sam could come at 3 for his EEG!!! “Yup Yup Yup!!”

At 3pm we were at the hospital and Sam was hooked up to the EEG machine. For the third time that day I was telling Sam’s story and filling the tech in on everything and for the third time that day there was some jaw dropping and looks of amazement at my Sammi. I am so proud of how he handles it all and his answers to things... he makes me  shake my head and my heart burst!

By 4.30 we were done and leaving the hospital and finishing up a few things before we made our way back to Neepawa for cadets. 

That was my week... in a nut shell... now here I sit Friday morning, Sam is still in bed and the house is running as it usually does and here I smile as our new developments and our now new normal is all starting on a day that couldnt be better... 

...Good Friday...

the day when our Lord dies for us. His death is the beginning of a new life for us and His miraculous rise is only a few short days away...

Dennis and Sam had a talk the other morning before we left for Winnipeg and Dennis told Sam to ALWAYS remember when he was in Winnipeg and Someone sat with him on his bed. Dennis told Sam “God was with you all through this and in the hospital, so He isnt going to leave you hanging now”. On our way home that night from Winnipeg, Sam turned to me and said ,”you know mom, I have been thinking about what dad said and he was right. God WAS with me and He WONT let me hang now. He will be with me through this all.”

I wanted to cry... but I didnt, instead I just grabbed Sams hand and said “ you bet He will”

What an amazing kid, who KNOWS he has an amazing God! 

me? who.... whhhhaa?

Do you ever get that feeling like you should maybe take the kids to the doctor but you KNOW that as soon as you do they will be perfectly fine and you will be left looking like one of those mothers that has Munchausen by proxy!?  Some days (ok a lot of the time) I feel like this.... especially with Sam.
This morning as I was taking the kids to school he tells me that as they were going to visit my dad last night before air cadets, that when they walked in the PCH his vision went goofy on him. He had no peripheral vison (when the accident happened Samuel lost all peripheral vision in his left eye and we were told that he would have only about 50% of it when he was recovered--  but he not only gained it ALL back but his vision was improved to the point of not wearing his glasses anymore!). So his dad told him to sit down til it past. Not too sure how long this was for (they got home after 10pm and dennis was up late this morning and didnt get the chance to share the story yet). I asked if he hit his head at all or if anything happened at school that could account for this and sam said 'no'... My first reaction was a racing heart and stomach dropping and my mind raced that i should get him in to see the Dr. today... then I took a deep breath and told him that we need to remember to tell the Dr. of this at our next appt (in about 2 weeks). So I have made a note on Alice (my iPod) to be sure to let the doctor know about it (and i will interogate my husband tonight and get more of the story).
This upcoming Monday is our first visit to the TBI group support meeting in Brandon. To be honest I am nervous. I am scared that it will create an anxiety in Sam, or he will find things that others say there and use them to 'play us' (cuz lets be honest and not forget-- he is a teenager!☺) or that things that people will say may scare him and give him cause to worry. I have been praying for Sam and has really noticed changes in him. He is resting more, he is more open to talking to me about how things are going in his day and in his head (for the most part). I still havent spoken to the school yet (I have been away for 2 field trips inbetween having some lovely stomach bug... and Josh had the bug...)  So Monday morning I will call and speak to the Vice Principal and talk with her. Mostly just to check in that things are going as sam says they are for him at school.
I have been trying to get more awareness our there too about TBI. There is a serious lack of support and counselling for not only the survivor  but for the family too -- well in our area at least. (this group that we are going to with Sam is more for adults but we are taking him anyway since the last time we were there -- for my dad-- there was a young girl there with a TBI.)
Again I seem to be scattered with my brain and my thots ... will I ever be able to string together a logical post again? I sometimes kid Sam that I have a TBI too from being so close with him... ☺