Friday, April 22, 2011

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! 

Monday, April 18, 2011

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

Sunday, April 17, 2011

Another night in the Hosp, another letter to you

Sam, it is so hard to believe that right now you and I are back to yet a place we were at over 2 years ago. 
You are sleeping in your hospital bed and I am sitting here watching you sleep. My heart is so sore from emotions that have been running today... My head is aching and yet all I can do is wonder how YOU cope with all that you do...There seems to be a hole in my stomach for what the next step will be in our future...
This morning at 6am Josh woke me up with a frantic voice telling me that he thot you were having a seizure --  I jumped out of bed and ran to your room ...
to find your long thin body twisted and convulsing. Your usual smiley face and deepening voice making gutteral sounds and frothing at the mouth. Your beautiful blue eyes rolled back in your head... I told Joshua to call 9-1-1 and then turned back to you and tried to do what I could ---which was nothing ... until the longest 30-40 seconds of my life passed by.
Dad met Josh at the bottom of the stairs and he called 9-1-1 and Joshua called Granni, so she wouldnt be alarmed at the ambulance coming up our road.
I thot that time passed slowly on the drive to Winnipeg in ’08...this morning it crawled. 
When your seizure was over you just laid in your bed and my ind raced like crazy over everything I was to do and not to do. You would be so proud of your siblings.They handled everything they needed to do so well. They were quiet and calm and extremely helpful.
It took about 15minutes for the ambulance to arrive and just before they did, you came to and were wondering what was going on. Dad was sitting beside your bed and the furniture was all moved and a few moments later in come 2 strange men. I know you know all of this but I want to record it here (I am typing this on my computer now and I will post it later on the blog) so that you know how things happened. 
Since this was your first ever seizure the EMT’s agreed that it would be best to ride to the hospital in the ambulance -- in case you seizure again--  but thankfully you didnt.
Now you lay in the ICU bed again and I am marveling at your strength and resilience at this whole ordeal. You have been charming and polite with the medical staff, caring and thotful with dad and I... you are still my hero Sam.
I sit here and a million things go thru my head. I want to bargain with God to let me take your place, I want to be mad at Him for making you ... and us all... go thru this. But I know there is a reason for it... I want to cry, scream and just throw things. But instead I will sit here and type out my emotions here and I pray for you, me, dad, Josh, Isaac and Hannah. What if this means you are not able to play football? What if you will not be able to got your pilots license? What if you have another seizure in the next month, will you be able to go for your license in October? Will you still be able to handle going to Air Cadet Camp  Alberta? Will I be able to handle you going to camp? I have been mentally making future arrangements for us to go to Wpg for appointments (we already know that  there will be a CT Scan in the near future and other dr. appointments with neurologists)Did I miss something this time around with this? Was there a warning sign? Can I be strong enough to be who you need as we go thru with this? 
I hope you know Sam how much you are loved and being prayed for at this time. We have friends and family that are praying and sending you well wishes. I am praying for you, I am praying for me and I feel so guilty and selfish for saying that. But I want to be the mom you are going to need as we travel this new road, and I know I am going to need all the strength that He can give me to be that mom.