One Month Post Surgery

a·stound ( P ) Pronunciation Key ( -stound )tr.v. a·stound·ed, a·stound·ing, a·stounds
To astonish and bewilder. See Synonyms at surprise.

sur·prise ( P ) Pronunciation Key (s r-pr z )tr.v. sur·prised, sur·pris·ing, sur·pris·es
To cause to feel wonder, astonishment, or amazement, as at something unanticipated.

It has been one month (and a couple of days) since our little boy had brain surgery! Our lives have already changed so drastically! The surgery was only supposed to get rid of the big seizures, or reduce the severity of them. We did not see a seizure for three weeks! That has never happened in the whole time Mason has had Epilepsy. That truly is far over and above all that we [dared] to ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]— (Ephesians 3). Early mornings have been the time when he has had the strongest seizures. Friday morning around 6:30 he was moving around, so I went and lay down with him. (I’ve actually been sleeping in my own bed for a couple of weeks now!!) After a bit I felt him have some extremely mild body twitches. I looked at his face and his eyes were open, but not responding to me. This only lasted moments before he fell back asleep, still tucked in. After five years of watching him extremely closely, I still find myself looking at him a lot wondering “was that a seizure?”. We don’t know what is going on inside his brain, only tests in the future will reveal that, but to go from 20 – 30 per day down to next to nothing is nothing short of a miracle.

Mason has been changing so much. He really is a very different boy. He walks now!!! No longer that tilting forward frenzied run! Calm, more relaxed. Attentive in school. Focused, following instructions. Sitting through circle time in grade 1. More responsive to us, chatterbox, copycat, repeating single words all day.

Those are some words that now describe Mason. There is so much more. The changes are happening so very fast. Mason’s speech is really coming along. In the last couple of days he has started yet another new thing. Walking around with his hand out, palm up, telling me “stories”. He’ll walk over to something, facing me and saying something! He has so many new sounds coming out of his mouth, it’s like a whole language. The expression on his face looks like he knows what he is saying, and we understand.

In the past we would usually see new steps of progress every few months . . . maybe. Even those he would often loose as he would have more seizures. Now we see many new things each day. It’s so amazing!! Our house is full of gates and doors with keyed locks just to keep Mason safe. Lately I am able to leave gates open!! He’ll walk into the kitchen and not go for his normal obsessions, water at the tap, dishwasher, stove, microwave fridge door, etc. If I tell him to come out of the kitchen he actually will!!

He has become very aware of his surroundings, which is so good developmentally. The drawback is severe separation anxiety. Now that school is back in session after the strike, we have had opportunity to experience this to the fullest. He screams his little head off each morning. He is in the process of perfecting “jello body”. We really are in the “terrible twos”. So as we walk from the car into the school, either I carry him, or he drops to the ground every few steps. If the ground is dry it isn’t such a big deal. I can’t hold onto him because of the jello effect. When a two year old does this, it’s easy to pick them up and carry on. Not so with a 6 ½ year old. I’m ok to carry him if he isn’t fighting me, but I’m noticing a few extra aches in the joints this week! Moments after I leave the school, he stops crying until he sees me walk in the door at the end of the day.

He is doing so well in school. His teachers and TA’s keep telling me the new things he is doing. We are trying to get speech therapy going. His brain is such a sponge now we really need to take advantage of it. He sits through circle time in grade one. He is really really noisy though. It’s so nice that he has the option of the Special Ed classroom to go to when the grade one kids need to work quietly.

Sometimes I look over the past e-mails I have sent. It really is a great way to journal our journey, while at the same time as sharing a part of our lives with all of you. Right now I feel like the last page of another chapter in our lives has been turned. The Author filled that last page with suspense and anticipation, hope and peace. I am eager to see what happens in the pages coming up. Our life has been like one of those intense books you just can’t put down. I really want to go to the back of the book to see how it will end!! Because we know the Author loves us and has plans for us, good plans, I know the rest of the book will be well written. There will be more moments of suspense, joy, fear, frustration, laughter, and difficulty. The beginning of this next chapter is one of changes, adjustments and confusion at times. We are having to get to know a different boy.

Psalm 40:1-4 I waited patiently for the LORD to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be astounded.
They will put their trust in the LORD.

Your prayers will continue to affect the rest of the book and will be forever marked on the “acknowledgements” page of the book of the life of the Martens family. Thank you so much. Shirley

Changes in Mason

The new Mason.

We have not seen a seizure in 2 ½ weeks (first time in 5 years!). As a result, he is a very different boy. We are still trying to figure him out, but it will probably take some time yet. This is what we have seen so far:

- Much longer attention span.
- Chatterbox, non-stop some days!!!
- Repeating words after us
- Comprehending what we say better
- Following more directions – more cooperative
- On the computer a lot – more interactive than before
- Walking more vs. running
- Can make his voice quieter on occasion
- Sleeping through the night (no seizures waking him)
- Not napping (no seizures to tire him out) – but staying awake late
- Seems to know what he wants sometimes, but is unable to communicate it resulting in more tantrums – throwing himself to the floor
- Mood swings as a result of brain surgery itself – may go on for a while yet ?????
- Mood swings from hunger???
- Sometimes is more difficult to distract if throwing a tantrum (longer attention span!!)
- Loud
- Appetite is much less - sometimes prefers to be fed
- Not drinking enough – keep his water cup with him, meds need to continue to be flushed from his system – he has become an occasional sipper
- Interests seem to have changed ????
- Is bored with adults – needs kids!! – tends to copycat kids more than us adults
- Extreme separation anxiety (has been with Mom nearly every moment for 4 weeks)

New obsessions:
- Repeated touching his nose
- Repeated touching the floor
- Tilting his head onto his right shoulder
- Touches his right eye repeatedly when upset
- Computer – hard to get him off
- Trucks, tractors trains, cars
- Hypersensitive to some sounds - water running scared him for a few days
- There may be other things scaring him that we are not aware of

Ways to distract unwanted behavior:
- Sneeze or cough – he will laugh
- Peek-a-boo – where’s Mason?? (or name of friend . . . .)
- Say “Where’s a truck???”

Fingerprints of God

I put this into Mason's Web (first website).
I just read it again and so now I want to share it with you today.

Forensic scientists have known for a long time that if a person touches anything with their bare hand, it will leave a fingerprint. And it is not just a smudge, it is a distinct pattern left behind by only one person. In recent years, they have also learned that even minute traces of DNA identify a single person. DNA cannot be seen by the naked eye, yet there is no disputing it. As God our gentle Father sculpts us through every good and bad experience in our lives, He too, leaves behind His unique finger prints and DNA. Because of who He is, I believe that everything he touches is a miracle. His fingerprints are left behind in the miracles that we see with our human eyes. His DNA is woven through every aspect of our lives. In the way we are created to the circumstances he allows to happen. We cannot see its evidence, unless it is revealed to us through the microscopic eyes of His Holy Spirit. When the day arrives that we will meet Jesus face to face, He will reveal all the evidence to us. That is where the pieces will all fall into place.

10 days seizure free!!!

Could it get any better??? Actually yes. We have seen huge changes developmentally as well as behaviorally. We really are having to get to know a new child! Mason went away for respite this weekend (he’s coming back this afternoon) . I thought there would be problems with separation anxiety, but no!!! An hour and a half after dropping him off, I got a phone call from this lovely young couple “What did you do with the old Mason?” He’s focusing on his toys, not running from one thing to another every few seconds, happy, talking, trying to copy what we say (single words still). The only negative part is that our ears are ringing by the end of the day from all his non-stop chatter!!! I think he has progressed more in the last couple of weeks, than the last three years!

Although we have not seen any seizures, tests in the future will tell us what kind of activity is going on inside his brain.

With Mason being such a sponge right now, I can’t wait for him to get back into school. He spent a couple of hours in grade one the day before the teachers strike began. He cried so much thinking I was going to leave him. So I stayed as well. Hopefully it will be fine when he does go back. His grade one teacher is very accepting of him. Both she and the kids don’t seem to be bothered by his noise.

It is so amazing to see the far reaching effects these e-mails about Mason have. I’m realizing more that they are touching a lot of people I don’t even know. These e-mails getting forwarded on to others, articles in the CMC Chronicle (church I grew up in) going out to even more people

God had a plan for this boy’s life long before the seizures began. A plan for good, and to prosper him, for hope and a future (Jeremiah 29). And he’s only 6! Mason has a family that loves him dearly, and he affectionately loves back. ( he is very kissy lately) He is so generous with his smiles and kisses to friends so many others in his life. His face and eyes (one brown – one hazel) light up so genuinely it is quite infectious. All of you who read this are a part of the plan as well!! His life is meant (as is with all of us) to bring glory to God and I want to thank you all for letting me use this medium to do that for him.

Shirley

Happy Thanksgiving!!

Hello all!!!
Mason is doing extremely well. I have not seen any seizures since Saturday or a possibly a mild one on Friday that I am not sure about. That boy has become such a chatterbox!!! He has been trying to imitate everything we say. It is so amazing to see him making so much progress. Full of beans, noisy, and yet more cooperative with following some instructions.
Thank you so much for your continued prayers. It has been exactly 5 years (on the 12th) since Mason was diagnosed with Infantile Spasms, a rare form of Epilepsy, (now progressed to Lennox Gastaut Syndrome). I had started noticing the "odd movement" (early seizures) during the last week of September and first week of October in 2000.
For the last 5 years, we have seldom gone more than a few weeks without constant changes happening. Last summer was the longest break we had in the early months of the Ketogenic Diet, with Mason holding steady for a couple of months. So, being on this constant roller coaster ride makes us really covet your continued prayers. And at the same time, we are so incredibly thankful for your support. God has really been good to us in providing us with each one of you. As well as many people that we don’t even know who think of us and pray for us.
Thanksgiving weekend, five years ago, was a weekend of great fear with increasing seizures, tears and crying out to God, knowing something unknown was terribly wrong with Mason.
This Thanksgiving we are truly thankful for the goodness of God over these five years. He has really taken care of our needs and brought so many amazing people into our lives. And what an miraculous time we are in right now, after the brain surgery!! As always, we don’t know what tomorrow holds, but we rest in the One who does.

Happy Thanksgiving!! : - )
Daryl & Shirley
Asia, Sydney, and Mason

Just want to send a quick note for prayer request.
Mason started having new seizures this evening (Thursday). We were told to expect different seizure types. He had three where he went all limp and non-responsive. He has also been quite moody in the last couple of days, as well as poking his right eye a lot, for reasons I don’t know.
We had also been anticipating some nursing home support through Daryl’s work insurance, but have now been denied. Pray for our continued strength.
I want to share some inspiration on a card we received from Daryl’s Aunt and Uncle today. (perfect timing once again . . .)

God will get you through -
Not somehow,
But
Triumphantly

Inside:
He can do what
Our strength could
Never do …
He will do what
our hearts could
never imagine.

Romans 8:32 (NIV)
He who did not spare his own Son, but gave him up for us all-how will he not also, along with him, graciously give us all things?


. . . . . To Him who has already done more and will do more than we can even dare to ask or think. . . . To Him be the glory . . .

After Surgery - Saturday

Mason is sleeping right now. He’s been having great naps.
So here’s a little more in-depth of what has been happening.
Mason actually had two surgeries. I don’t think I’ve mentioned the other one, seemed so minor. A few years ago Mason had the VNS implanted. (read more at www.bluesticker.com/mason ) it has not been affecting the seizures in a very long time, but there was no harm in leaving it in. So now that he was in for the brain surgery anyway, may as well take out the VNS. About a 45 minute procedure. So that incision is underneath his left arm pit area. I don’t think that Mason has even noticed it.
As a refresher: the brain surgery that Mason had is called Corpus Callosotomy. The surgeon severed the part of the brain where the left and right side of the brain communicate with each other, stopping the seizure from crossing from one side to the other causing the big seizures - tonic drop seizures, tonic clonic (grand mal)) and the like. The purpose was to decrease the intensity of the seizures, not the amount
So far, the number of seizures has dropped by about 90% - not really expected but accepted!!! He was having 20 - 30, and now just a few in the mornings. The intensity has also decreased by the same amount. The morning seizures have been the strongest and worst, causing Mason to fall and hurt himself, as well as have some difficulty breathing. Monday, a week before the surgery, he had three tonic clonic seizures before school. Really wiped him out, and the first one had his face buried in the blanket with little or no breathing room. Now his seizures are tiny little twitches, hardly noticeable if we’re not looking.
There could be changes along the way, especially in the first few weeks until the swelling goes down. His face had a bit of swelling the first day or two, but if he’s wearing a hat, you wouldn’t know a thing was different. The incision is longer than originally anticipated. It’s like a big staple shape. Because Mason had a lot of blood vessels at the top of his head, the incision was made to be able to into the brain from the front for part of the surgery and the back for the rest. As it turned out, our gifted surgeon was able to do the entire process from the front only, eliminating the need to disturb the back part of the brain. Although the surgery time was anticipated at 3 ½ to 4 hours, the brain surgery actually took about 4 ½ hours. With the rest of the time taken for the VNS.
I am figuring out pain management and why he cries. Yesterday he had been crying a lot, gave him Tylenol with codeine. Didn’t do much. I was a little concerned. Then we fed him supper. He ate 3 pieces of lasagna and garlic toast. He was very happy after. His cries have changed, so I have to get used to them.
Today has been a great day for Mason. Lots of laughing and giggling, triggered by burping and peek-a-boo. He even had some bounced to his step today, so I see running and jumping starting shortly!
So that’s it for today. I hope you can all see how important you are in the miracles of Mason’s life. Thanks for your support! He’s just woken up, so I gotta run! Shirley

After Surgery - Friday

Hello all.
Your prayers are so appreciated and hard at work.
We came home today. We actually could have come home yesterday, but I opted to stay one more night. 3 days in hosp. After brain surgery!!!
Still working out why he cries - pain - hunger - discomfort etc.
I’ll write more after he’s in bed tonight . . . if I don’t fall asleep at the same time!

After Surgery - Wednesday

I am sitting in Mason’s room up on the neurology ward now. He was let out of ICU this morning. Mason is still sleeping quite a bit. It’s so unusual seeing this normally non-stop active boy lay in a bed a lot. But he is doing well. When I spoke with the surgeon this morning he asked me how I felt Mason was doing. I said he was getting a little more alert all the time. Then I asked how he felt about how Mason was doing. He said he was very pleased with how every thing was going.
Mason has had several seizures, although not nearly as severe. But that is expected for the first few weeks until the swelling goes down.
Mason yanked of the head dressing a little while ago, eliminating the need to ask the dr when to take it off.
Mason has been rubbing his face a lot, so he has been given benadryl now for being itchy. He has been off the morphine for a few hours now, and a bunch of the other hookups are off.
He has been giving us the occasional smile and giggles when we fake sneeze or play peek-a-boo. He has also started kissing his stuffies already. (Daddy bought him a new little white puppy) and we found a little magnadoodle to draw on.
Asia and Sydney are coming to visit Mason tomorrow.
Thanks again for your continued prayers and thoughts!
Love Shirley, via Daryl’s e-mail for the Martens gang
5 hours latter…Daryl here
Mason ate a small box of cheerios and then almost all of his supper.
He’s been awake for 5 hours now doing really good.
The doctors are amazed how well he is doing. Lots of kids are very nauseated…Mason none.
Thanks All …Daryl

After Surgery - Tuesday

I am watching mason sleep right now. Daryl will send this later for me. First time for everything: Mason fell asleep 5 minutes before being sedated with gas this morning. He never noticed a thing. He's been sedated for a variety of tests and VNS surgery and it is always a traumatic experience for him and me! So this was a HUGE gift!

Surgery went very well. He was in nearly 5 ½ hours (longer than anticipated). I was talking to him shortly after he got to ICU, “you had a big nap!” he responded “no”. it’s 5 pm right now, and Mason has been sleeping most of the time. The surgeon said the surgery went very well.

Monday MRI

Super super quick note.
The MRI went well today, other than the trauma and tear of being sedated. (his tears and mine!) Mason co-operated with everything well. Usually getting his weight & height are as distressing as getting blood work done! Not today. He was quite complacent today, even tempered and happy.

The prayer time at church tonight was so wonderful leaving me feel enveloped with open arms by family, friends and strangers alike. So thank you for all of you who joined us. And to those who were not able to make it, thank you for your prayers from afar. Our circle of support is incredible. Our God is immense.

Well I should get prepared. I will be getting an e-mail out, hopefully tomorrow, via Daryl.
Thanks again for your support in prayer and in offers of helping out. Sooner or later I will take you all up on it.