Triggers...

Trying to figure out these seizures are going to be the end of me! Learning (or figuring out rather) what Sam's triggers are .... sigh ... lets just say that just when we think we are getting a grip on the and possibly seeing some order...
we don't.

Yesterday Sam was tired-- so tired that he was 'napping' at 9.15am. He slept for a about an hour then went out to help Dennis with some field work at 10-ish til about 2, then came in and was very quiet and withdrawn, watched a movie in our room, ate a bit of dinner and came down before bed t inform me that his back and shoulder on the right was jumping like crazy.
His quietness and subdued manner is different from when his anxiety kicks in (obviously) and with the nerves jumping and his tiredness -- well we thot there might be a seizure this morning. Not that I want him to have one, I just wish we could learn the triggers and possible pre-cursors to them. These surpirse sneak attacks that they do are too much!
This week I am trying to get some snacks and lunch things ready for school next week, lunch stuff ready for our 2 road trips on Thursday (to Wpg) and Friday to Regina, school supplies organized, canning done, laundry, housework and football -- throw into this mix the new puppy had fleas and gave them to my dixi, so that meant 2 doses of 'flea bgone' and one bath AND an appointment at the dog groomers so that they can stay at my mom's this weekend while we are at the wedding...
I am also trying to not make the house stressful (as that could be one of his triggers). I am beat!  I am supposed to work on the attic room for my space this week but I don't see it happening.

I spoke with the resource teacher at Sam's school yesterday too and we are trying to make some plans for his school year but until we see the neurologist we can't do a whole lot -- which will mean a rush on it all next week. I am ok with not pushing it but Sam is determined to get back to normal. I hope we can make it back to there too.
I miss our 'old normal' ...
the one we were at 6months ago...
Never thot I would hear myself say that...

Defying Gravity...

Last night Dennis and I took some time out of life to go and see the Broadway play WICKED. It was amazing! I loved it - Dennis enjoyed but I think LOVED might be too strong of wording for him.

I loved the words to the song Defying Gravity :

Something has changed within me

Something is not the same

I'm through with playing by the rules

Of someone else's game

Too late for second-guessing

Too late to go back to sleep

It's time to trust my instincts

Close my eyes: and leap!

It's time to try

Defying gravity

I think I'll try

Defying gravity

And you can't pull me down!

http://www.lyricsmode.com/lyrics/w/wicked/#share

I know these lyrics are about love but they spoke to me last night about all the changes that we as a family have been going thru the last few years and especially these last few months.
I am tired of playing games with rules that seem to be more from EVERYONE but THE ONE who matters.
I am tired of people who have no idea of what our house is going thru telling us what we should be doing...
so....

I am taking my faith in God (trusting my instincts)

Closing my eyes and leaping -- straight into my Fathers arms.

I am going to work at handing it all to Him.

I am not going to worry about what is next or things I can not change. I need to start focusing on not just Sam's health but my own also. 

I saw the counselor  yesterday and I am going to work on getting the attic area back to a place for me to be to just be ... well ... me. Somewhere for me to be where I DO NOT worry about Sam, Dennis, Josh, Ike or Hannah. Somewhere that I can read, work on photography or just do nothing for a few minutes a day. The kids will be that if I am up there they are not to bother me. I will give them a time of how long I will be up there for and when I come down (and only then) can they show, talk or whatever they needed to me. They also need to learn to go to Dennis for things too. They need to learn that while I may be mom that he is dad... we are one in the same for a lot of things.

I am talking with God too about whether I am to be going back to work -- I am handing it to Him.
I am praying about Sam's doctor appointments -- and any issues that arise ... I am handing it to Him.
I am looking into maybe taking a photography course for a few months this winter -- again I am praying about it and handing it to Him.
If Sam is to be home 1/2 days for a while, we are wondering how we are going to afford to not only drive to town everyday, still be involved with football and the other things that the kids are involved in-- I am handing it to Him.

Everyday I am going to spend time each morning with Him, and work my days so that I can spend some time each day doing something for me (and NOT just Curves or walking-- as that is for my physical health)
I knowI have said before that I should be doing all of this but now I am at the point where I HAVE to do this. I am losing ME in this process of doctors, appointments and life.

So this is me... Defying Gravity...

1122 days...

That is the number of days we have been waiting for a neurologist... (if you have read this blog you will know we have not had one and have just recently wondered why not...)


BUT!!!!!(wow that is a big but! lol)

Next week at this time we will be in Winnipeg at the epilitologist in Winnipeg! They just called today to push forward our appointment which was for Nov 30 to Sept 1!!!  We are all very happy and extremely excited for this!
Sam is hoping that he will allow him to go to school regularly (me too) and I think he was secretly hoping for an all clear for football (which I would LOVE too) but I think that one is a stretch.
 Next week... wow!! I am just....

WOW!


God is good!

Times they is a changin' ...

After our week of changing of meds, strep throat, holidays ending with the seizure was followed up with a first thing Monday morning doctor appointment with our family doc. Dr. N. Both Sam and I had appointments and both had a bit of alarming news.

First of all, after talking with the doc about Sam’s med levels we were told that with the fragments sitting in the 3 different lobes that he is most likely having 3 different kinds of seizures..... so one type of medicine is not necessarily going to work. He may need to go on a second med to help with the seizures. The doctor also suggested that since Sam is sundowning by 2-3pm (this is what valproic acid does to people) that he only takes a 1/2 day school day...

Sam was NOT impressed with this news. He is just a ‘wee bit’ upset... to put it mildly. He told Dennis that he didnt want to do a 1/2 day and who can blame him. He is going into grade 11, he will be 16 soon and wants to be with his friends not stuck at home with his mom. We are still working on what we are going to be doing when school starts (In 2 weeks)

We are hoping for the neurologist appointment to be moved up too now -- our family doc is going t aim for in the next week or two or at the latest in the month (I think he meant Sept.. but we will see)

I spoke with the school student co-ordinator yesterday and she is going to work on getting a tutor for Sam if needed. SHe also said the school will work with us for whatever we need. It is great to hear but in the last 3 years it all seems to come down to the teachers and if they don’t ‘see anything wrong’ with Sam so they don’t help with what is needed for him: reminders to take breaks, reminders to write down assignments, checking in with him throughout the class time on how he is doing, etc. They left him to his own design these last few years and he faked his way thru it fabulously! (give the boy an Oscar...) SO maybe this year with the URIS nurse giving a talk about epilepsy at the first Professional Development Day and what to watch for and do they will help us more. 

At our appt with the doc. we also learned that I have high cholesterol ... the not so good one. It is high enough to be concerned and in 3 months we will test again and see what it is. I AM exercising and watching my diet-- doc said this one is mostly genetics so not a WHOLE lot I can do... sigh BUT!!!! All the tests and work ups he did a few weeks ago show my physical was good -- YAY! 

The next few weeks are going to be interesting and hopefully a continued move in the direction we need it to be to get Sam the kind of help from the school that he needs that will work with not only his epilepsy but his TBI too. I pray it will not be stressful for him (seizure trigger!!!!) and it will be a workable arrangement for our whole family -- because  since Sam’s accident in 2008 this has been a whole family lifestyle change and life change. It needs to work for our house and our family not just Sam... and I think a lot of people forget about that part of our journey ... Dennis and I still have 3 other wonderful children to raise and spend time (not to mention money) with and then there IS that pesky thing of keeping a marriage alive and running.... sigh 

Keep calm and Carry on... ummm ok?!

Lord, help me to remember that today there is nothing that You and I together cannot handle. Psalm 68:19 The Message

This has been a passage that has gone thru my head a lot lately. The last few years actually.

Everyday is a new challenge for not only Sam but for all of us as a family. We learn of new developments...

and then we learn how to deal with them...

I have lots of people who ask how I do it?

How do I get thru everything that has been thrown at us?

Somedays it feels like my answer is “I am not sure if I do ‘get thru it’”  other days my answer is “I just do ... with a lot of prayer”

This last week is a good example of ‘I just do’. We went on our second ever family  vacation. Most people go or plan for a relaxing holiday -- and we are like everyone else. We HAD planned for R&R ... and that was as far as it got... we planned.

The week before I was so busy running around with doctor appt’s, orthodontist appt’s, getting the oil changed in the van, packing when I could, 2 very sick kids (Hannah with tonsillitis  and Sam with strep throat), helping hubby when I could and just regular everyday things:  laundry, meals, etc. that I was going to need a week to rest so I could GO on holidays with everyone! 

We discovered on the day we were leaving for camping that Sam (who was still running fevers and a VERY sore throat) was given the wrong amount of medication... he was given a pediatric amount... Sam is 6’1/2” , so his meds were increased to a proper amount. The doctor also informed us that his seizure med levels were VERY high (should b 50-100 and his were 130) This meant for us as the family that Sam was tired and still very cranky but doctor told us to go and get some rest and enjoy our time away “Sam will be better by morning” ....  so we went.

At about 7pm we reached our camp ground and left the van to check in... mistake #1.

Theer was an altercation between Ike and Sam -- which ended in Ike getting a few knocks from Sam and Sam getting spit on.... sigh... seriously not impressed at this.

Mistake #1 then lead into altercations #2-4 with Sam and Ike as they were attempting to set up their sleeping quarters for the next 5 days (the tent). This lead Dad to have to get involved and then everyone was cranky!  Which lead to us praying before anymore injuries incurred or anyone hurt feelings...

The next 5 mornings were started with my phone going off at 7am (but actually being up st 5am to listen for any seizure activity from the tent...) and giving Sam his meds, trying to make coffee quietly and not wake anyone (so that mama was happy and had a quiet start to her day!). Hannah and Ike were on ‘seizure alert’ before this time and after ... Sam was not impressed by his new ‘watchers’.... again .. sigh

The days were filled with Sam doing his best to not be with us (typical teen behaviour) and not wanting to keep us informed as to his where abouts (which we asked to be told if he was going to beach (not to swim without someone) and if he was taking off for a long period of time ‘please take your cell phone’) 

It was a stressful week and we were all glad to make it home without any seizure activity! 

We got home Thursday night and had plans for going to a free concert at Clear Lake on Saturday... 

... Friday we went to my mom’s house for dinner and Sam stayed over night at my mom’s and Saturday morning I received a call from mom that SAm was not feeling well. After a bit more information we discovered he had had a seizure.... so off to the hospital we went.

Thankfully we were only there for the day this time, but it was a loooooooong day. 

All thru this past week I have prayed and thot and prayed and thot.... and prayed some more. I have had to keep telling myself that God is with us as we go thru this and sometimes we have to just “let go and let God”. As I sat in the hospital again this weekend I thot of this and prayed... 

This is how I get thru everything. I do have mini meltdowns (as I like to call them) which usually happen in the car alone  or the odd time while shopping...sigh.... but I pray my way thru them and carry on (kind of like the Queen’s tag line”Keep calm and carry on”) 

But I have also been known to say to people who ask ‘how do you do it” my reply is “what else am I going to do!?” (such profound words from such a small town girl!)

I will admit that this week I will be starting back with some counseling but more because I need to learn to let go of stress more (silly stomach issues) ... I am a hoarder sometimes   -- of stress ....

sigh

i have more news to share but I will do that tomorrow...(see I am teachable on stress levels...just a bit of a slow learner! ☺)

The one...

The following post was in my inbox this morning, it is from Proverbs 31 Ministries (I get their daily devo every weekeday -- if you want to receive them to just click on the link and sign up for them!) and it really made me stop and think... the one...
I believe that the one that the One sent to us this week is our new doctor -- Dr. Nasralla -- when Sam and I saw him last week he told me how he was working to get Sam into a neurologist and he had been phoning and talking to doctors and that by the end of this week he was going to have answers for us.  I believe that God put him in our lives for this reason. He is going to be the doctor that will fight for us and with us for Sam's care! So I will continue to pray for Dr. N and Sam ... and all the other doctors that are and will be involved with us (they will need it once they meet us! lol)  
Yesterday I had to take Hannah gurl into the hospital because she had bleeding tonsils and an ear infection -- Hannah rarely gets sick... and we were told that Dr. N was in Wpg -- so I joked with both Hannah and Sam (he was in for blood work) that maybe Dr. N was in Wpg fighting to get Sam into a neurologist... maybe... 
The trip to the hospital ended with the doctor on call not looking at anymore out patients as he was late for his clinic and God making sure there was an ENT at the hospital (we are a SMALL rural town with no 'speciality' doctors regularly) who looked at her -- with a prescription in hand we headed to the drug store then the grocery store for some yogurt, pudding and apple sauce then home to bed for my lil' girl. She is (or rather was last night) feeling better now that she was able to sleep the day away yesterday and eat some food too!  Again, God put the one doctor that we needed in place before we knew we were going to need him! What an amazing God!

August 9, 2011 It Just Takes One Marybeth Whalen

“But the gift is not like the trespass. For if the many died by the trespass of the one man, how much more did God’s grace and the gift that came by the grace of the one man, Jesus Christ, overflow to the many!” Romans 5:15 (NIV)

“I just wanted to tell you,” she said. “It just takes one.” She knew we had our house up for sale and wanted to offer me a word of encouragement. She had also recently been through having her house on the market and knew what I was facing.

As she grabbed my hands in her own, she looked at me earnestly and said. “It just takes one person to come along and love your house and want to buy it. Hang onto that when you get overwhelmed. God will send that one.”

I have thought about what she said to me, and how this Truth applies in many aspects of my life. God will send that one. The one person who can best encourage me. The one person who will provide the answers I am seeking. The one nugget of Truth my soul is craving. The one bit of hope when everything seems desperate around me.

What is that “one” thing you are waiting for God to send you right now? Maybe it is that one test result you are waiting for. Maybe it is that one check you need desperately to show up in the mail so you can make it to payday. Maybe it is that one affirmation you need to hear, but rarely do.

Do you believe that God will send that one? Do you walk in that belief, even when circumstances around you say otherwise? Do you focus on what is happening, or God’s promises?

God’s most wonderful promise came through the One who could be tempted yet sinless, Lion yet lamb, human yet God. God’s plan for redemption came through His one and only Son.

It just took one—one sacrifice, one resurrection, one hope for eternity. Humanity cried out for restoration and God responded by sending that One.

“It just takes one,” the woman told me. And that is true, even in this broken, fallen world. So many times that “one” seems far away, so insurmountable, that we despair of ever seeing it come to pass.

Make today the day that you live believing in that one thing happening—whether it is a sold sign in your yard or healing in a relationship; turn to the Creator of all things with whatever is on your heart. Spend today reflecting on that one sacrifice He made on your behalf, because of His unfailing love for you. Trust Him to do what is best for you—whatever His answer may be—and live in expectation of the abundant life He has promised.

Dear Lord, help me to trust in You to send the answers I need. Help me to take my eyes off my circumstances and focus solely on You. Thank You for the sacrifice of Your precious Son so that I could have salvation. In Jesus’ Name, Amen.

Life ain't always fair... sometimes it really SUCKS!

in my head I have wrote this post a dozen times today... and now I am struggling to find the words that I wanted to say...

I have cried today
I have prayed
I have ranted and raved
I have posted frustrated statuses on facebook
I have made phone calls
I have stumbled over my words
I have broke down in my car while driving
I have cried at the drug store (and probably freaked out our wonderful pharmacist)

Yesterday on the way to Brandon for a day trip of shopping and getting out of the house I got a phone call from the URIS nurse from school. It has been recommended from ESAM (Epilepsy and Seizure Assoc. Manitoba)  that Sam not play football -- until he is seen by a neurologist. The real kick in the teeth was to be told "it is for his best interest" " YOU wouldnt want him to get more seriously injured or have other issues physically".... GGGGGGGGGRRRRRRRRRRRRRRRRRRRRR

"Nooooo, really!?! His best interest!?" I wanted to yell at them WTF do you think I have been doing the last 3 years since the accident and the last 15years of his life!?! Do they seriously NOT think I know all this!?! DO they think I am not aware that he needs to be looked after physically!?!

I think that these people seriously do believe this... but I also believe that THEY have forgotten that there is another side to Sam. There is his emotional and mental side.  Survivors of brain injuries and people who live with epilepsy all have to deal with issues of depression... This summer since Samuels seizures have started he has lost his cadet summer camp (which was ALSO a paid job for 3 weeks), he is unable to go for his drivers license, he now has a LOOOOOONG list of restrictions on him at his regular cadet year -- where he has been a cadet for going on 5 years.  (one of the restrictions is no marching for him-- meanwhile he runs 3-4 miles a day ALONE...)

I totally understand that there has to be precautions and  some restrictions... but how about going on an individual basis and not a "broad-general-all-or-nothing" kind of schedule. if they were to step back and see some of these issues that they are restricting him from are not only ridiculous but they are detrimental to his health... his mental health! He is so upset by this new development ... he was really hanging on to football now with the cadets and license thing... Even tho it is just til we can have a neurologist OK it... that could be .... FOREVER...

Sam and I were at the doctor's again for a check up. Dr. N told us that he was on the phone with the HSC this week  -- with BOTH pediatric neurology and the adult neurology -- apparently even tho we have been 3 years without a neurologist and Sam will soon (in less than 6 months) be 16 years old and be able to go to the adult neurology -- they dont want him.  But it is almost the same amount of time to wait for a ped appt.... so by the time he actually GETS to the neurologist he could be viable for the adult neuro anyway!

A re-cap of our day is once again our life and Sam's is on hold as we wait for yet another doctor to 'let us' move on to the next stage ...