Stories

It’s been just over 6 months since Mason had surgery. Our life continues be completely turned around. Mason is doing amazingly well. Sometimes I wonder if it will all end, but am so very thankful for each day of continued growth in development for Mason. As far as his seizures go, there haven’t been many changes. Occasionally we see something during the day, usually so mild that it’s barely noticeable. He even seems to be having quite a few less seizures at night than even a couple of months ago. His first stretch of sleep at night is getting longer, now he usually doesn’t wake until 3 or 3:30 am, at which point either Daryl or I sleep with him the rest of the night. Although it’s becoming less intense, Mason is still scared to be alone at night.

There are so many things that Mason is doing now. So I’m just going to tell you a few stories!

One of the best things going on right now is “time out”. We’ve never been able to discipline Mason before, because he never understood it and nearly anything new he learned would get wiped out by a seizure. A month ago Mason climbed up onto the raised kitchen counter. I grabbed him and quickly put him in the corner of the red couch. And told him (in a very stern mommy voice) to sit in time out. He voiced his opposition to that decision with great volume, but stayed. I set the timer for 6 minutes. He tried getting off once, and I used my even sterner mommy voice to tell him to get back on. He complied. And although it was obvious he didn’t agree with my way of showing authority, he remained until the timer went and he received verbal permission to leave. Since then, it is a tool I use quite often. There was one time that he started to climb onto the counter again, and I gave him the option of sitting back down on the stool, or to go to time out. He stopped, looked at the red couch, looked back at me, and then quickly sat down. He fully comprehended what I said!!!!! I am still overwhelmed! There are times that he considers the option of behaving, or time out, or continuing his misbehavior and chooses the path of naughtiness, but soon is experiencing mommy’s behavior modification tactic, resulting in a very well behaved boy. I am careful to follow through on any threat I make, or I know it’s not going to work any more.

Another first: Recetly I took Sydney to a friend’s house (that actually happens often). I took Mason to the door with me, and he went right in, making himself very comfortable. I was invited in to stay, so I did. I sat on the couch and chatted with the mom (who has a son with Autism) while Mason wandered around playing with toys and the computer game that was on. I was able to stay for over an hour without having to get up every few seconds to re-direct Mason away from things he shouldn’t be getting into. I have never been able to take him anywhere like that before!! And there were pretty breakable things around and he wasn’t even tempted!

School is going so well. The other kids in grade 1 are amazing. There are a few that have really taken to Mason and are there to help any chance they get. He is also able to go to the grade 1 classroom from the Special Ed classroom by himself! There is another boy in gr. 1 and Sp. Ed. who has become Mason’s right hand man. He is quite a bit ahead of Mason developmentally with good speech. They usually go to gr. 1 together, holding hands. It is so cute. At lunch this boy will pass Mason the next thing he is supposed to eat, or pick up something Mason has dropped. He is actually quite different at school with his peers than at home. Everyone all around is so excited to see Mason be able to become so independent of constant adult help. He continues to receive a full time TA who is being shared with this other boy.

Asia and Sydney have always begged to have friends over after school. Recently I clued in to realizing that Mason would probably want that, too. So he has had two different boys over on three separate occasions now. Mason just loves it. I have not heard him giggle like that after school before! Plus he leaves me alone!

He still goes through separation anxiety when I leave the room, or even to the other end of the room! Spring break was long and hard. (two weeks) Being with me nearly all the time only increased the separation anxiety. But he re-adapted back to school quite well. As did I! Daryl commented on the great mood I was in that first Monday evening!

We’ve been taking Mason to church with us quite often. He is usually pretty good for a couple of songs, then I take him downstairs to the preschool area. While we are waiting for someone to volunteer to be his helper, I just wander around with him. Some weekends there is a man helping downstairs who has taken a shine to Mason and plays around with him, making it fun for both of them. Even though I seldom am able to stay for the service, it feels so good to be able to go to church as a whole family!

Well, I shall sign off for now. There are many more stories to be told, but I’ll save them for another time.

A few dates for you to remember:
April 19 Mason has an EEG in the morning and a Dr’s appointment in the afternoon. It’s the first one since surgery, and we are greatly looking forward to seeing the changes. Pray that the EEG won’t be as traumatic as last May. Now that he is even more aware, it’s going to be tough.

April 11 The hospital has put me in touch with a family in Kelowna. 8-year-old Caden, with very severe seizures, will be having the same brain surgery that Mason had. I will be going to see them the next day. Pray for great success in the surgery and the opportunity for Caden to progress developmentally as well.

Six Month Church Update

THANK YOU!!!

Six months ago you prayed for our six year old son and brother, Mason, when he had brain surgery to reduce his seizures. Prior to that he had five different kinds of seizures, each one lasting from a few seconds up to several hours. He had twenty to thirty per day of the most severe type that would cause him to fall making it necessary to wear a helmet day and night. His development stopped at the age of eighteen months due the severity and numbers of seizures.

On the night before surgery, Sept, 2005, we and many friends and family members met here with the Pray First team. We read Eph. 3:20,21 in the Amplified Version: “Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]--To Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it).”

Mason was seizure free for a full three weeks! The seizures that did return have been exptremely mild in nature and few in number. He began to learn and progress developmentally, for the first time in five years. He is even able to come to church now! Both of our doctors at Childrens Hospital are surprised at how well Mason is doing. Before surgery he would do or say something new once in two or three months. Now we see him do new things every day and he understands more than we ever thought he would be capable of. Psalm 40:4 “Many will see what He has done and be astounded. They will put their trust in the LORD.”

The road ahead will continue to be challenging and even quite difficult at times, so we covet your continued prayers.

Thank you so very much for your prayers and support,
Daryl & Shirley Asia & Sydney

Happy Birthday Mason!

quick note:

Mason just turned 7 on March 29, had the kid party yesterday. What fun!! Some great pictures at www.dropshots.com/shirleyann

I'll be adding some stories on his progress soon!

"Not What We Expected!"

Hello
Just quickly want to let you know how well Mason’s appointment went today at Childrens Hospital. I am not quoting word for word, here, but pretty much the gist of what went on.
Dr. Connolly the neurologist asked if he was having any drop seizures, I said none. Then she said that most kids continue with seizures, they just change in appearance, was Mason having the staring seizures? I said, he’s having nothing all day long, only mild ones at night. She looked up from the notes she was writing and said, " that is not what we expected" ( I knew he was doing better than expected, but I really liked hearing her say it!)
We talked about the night time seizures, I asked if there was anything we could do about those. She seemed to feel that they were so mild that we should just leave it for now. In her usual cautious way, she said it’s still early (after surgery to really know long term effects). Really not mess around with medications or anything - changes might increase the seizures again. So we’ll probably wait until summer to think about going down on meds.
The neurosurgeon, Dr. Steinbok, stopped in as well, checked Mason’s head. Healing very well, took him a moment to find the scar, (hair is covering it well now in the last few weeks) Mason’s skull is hard, which is good.
Both doctors seemed mildly surprised at Mason’s progress seizure-wise and developmentally. I asked her how other children did after this surgery. Some had no changes, others big difference. I told both that this has been the best three months in the last five years.
Do you remember a few e-mails back I used the word astounded? I am still amazed at the continued miracle we see day after day. I don’t know if I want to just say, "yep, this is what God does" or "I am so amazed that God has done this!" we are so very thankful for each day that Mason can live without a helmet, not fear for his safety, enjoy new things he is doing or saying.
He is really into a "clean up" mode. The down side is that we can’t find some things anymore! We have found the TV remote control in the washing machine, dryer, laundry hamper, in his backpack, in the shoe box, entry closet, and toy box!
Asia and Sydney, in their compassionate hearts often say to me, "I wish Jesus was right here so he could heal Mason." I quickly remind them how incredibly different things are now than before the surgery. As good as things are, the girls would love to see Mason fully complete. Wouldn’t we all? So whether it is today, next year, or the moment he sees Jesus face to face, we know it will happen. J
May God continue to bless each of you for thinking of us. Love Shirley

First Dr Appointment Coming Up

Hello everyone! Well, things are still going well with Mason. No seizures during the day,although I suspect I may have seen one Saturday evening. He does haveseveral clusters of mild ones at night. Which means I am sleeping with himagain. (you can take just a moment to pity me :-) Actually, I'm not doingtoo bad, I did get a month and a half or so after surgery of sleepingthrough the night ! Several times a week I get some amazing naps in duringthe day that are life savers.) He had been crying in between each one, Ithink they really scared him, but hasn't cried often this past week. Masonwakes 2 or 3 times per night, although he is settling down better now than afew weeks ago. He has to hold my hand or lay his head on me to fall asleep.One night he kept putting my hand on his chin, I couldn't take it away untilhe was fast asleep. He tends to fall asleep much quicker if Daddy is in hisroom with him. Daddy can sit in the comfy chair and work/play on his laptopwhile Mason stays in bed. I've tried that . . . doesn't work. His separation anxiety is lessening, and in general he is getting more likehis happy old self with much less crying. Mason had an MRI last Wednesday morning, and we are going to see Dr.Connolly tomorrow afternoon (Wednesday). This will be the first time she'sseen Mason since surgery. I can't wait to tell her how amazingly well he isdoing. I did send a couple of e-mails to her via her nurse.It's been over three months now, the best in the last 5 years of seizures.We are about to implement a pic symbol system which will change the way wecommunicate with him. Currently the main form is crying and we don't knowwhat he wants most of the time. Well I should head off to bed. Busy day tomorrow. Thanks again forcontinuing to support us in your prayers. Love Shirley
Pray for
- Medication changes that may decrease his night time seizures
- Learning communication will happen quickly
- Rest for me, even though nights are constantly interrupted
- The girls won't get left behind because I'm tired

Christmas 2005

What a year this has been. It is nearly three months since Mason had brain surgery. We are still amazed the change in this little boy. It was about three weeks in the beginning that we did not see any seizures. Since then he has had extremely mild seizures in the mornings when he wakes up, sometimes barely noticeable. Mason has been fighting a mild cold in the last week or so, and has been waking a lot in the night for the last few days, having quite a cluster of seizures each time – still very mild in form. We see no seizures at all during the day. It still feels very very strange to not have to watch him every second of the day, concerned for his safety. I can even relax when he’s out of my sight as far as his behavior is concerned. Before surgery, I never knew what he would get into or on top of. Always looking for sensory input. Balancing on the back or arm of the couch, licking the windows, obsessed with buttons on the TV and stereo, escaping if we forgot to lock a door. (all our interior doors have keyed locks, as well as both sides of the deadbolts)

Now, I can leave the inside doors unlocked, and he seldom gets into trouble, although I have heard a flushing sound occasionally lately!

We have been doing something in the last few weeks that we haven’t done in over 5 years. Sitting at the dining table as a family. Mason now sits with us on a chair, calm and relaxed for the whole meal! Then when he is finished, he carefully picks up his dishes and carries them (elbows straight out) with great caution to the kitchen. He has even learned to say chi-chin for kitchen. This is a big change from saying “aw-done” then tossing his dishes to the floor while watching the gravity/rebound experiment. He used to have a seizure with most meals with face-plants in his food, so this is so relaxing now!

He continues to learn new things at a pace so much faster than he ever has, although not at the speed with which a typical child does. He follows the routines at school very well, now. Sometimes I watch him through the grade one window with his friends. He will sit at his desk when they do, while he does his “work”. Plays at “centers” he has chosen. His teaching assistant can often stand across the room from him, no longer needing to keep him safe from seizures, or redirect him from challenging behaviors. He is very involved in the grade one classroom most of the day, while spending time in the special ed classroom when the others are doing more difficult work. The kids in his class really like him, and readily volunteer to be Mason's buddy in various situations in school.

Our current challenges are Mason’s levels of anxiety. My theory is that the part of the brain that controls emotion was not functioning before – Mason never showed great amounts of emotion. Now it’s been freed up, along with other areas, so all this new stuff is coming at him all at once. So with this overload of everything, he has become very emotional. He now cries if he sees Asia or Sydney cry. Severe separation anxiety with Mommy. Bedtime is very stressful for him. He has always gone to bed extremely well. Not any more!!! Someone has to be with him in his room until he falls asleep. Asia and Sydney often volunteer, but sometimes only Mommy will do. Although I have figured out that if I leave the house just before bedtime, he goes to bed much better for Daddy! When he goes away for respite, he goes to sleep without a peep.

The bottom line is that this is a very different boy we are getting to know. The most difficult part is that he is unable to communicate well with us. He has a few words, but the concept of communication is still not there most of the time. Crying is the main form of getting our attention. Some days he cries most of the time after school until he goes to bed. We haven’t figured out why yet. We are working with a behavior consultant and will be getting a communication system in place in the New Year.

We are so thankful that Mason’s quality of life has improved so much, no longer getting hurt, having to wear a helmet, having to have someone hover over him all the time. It has also changed the quality of our family life. i can pay more much needed attention to Sydney and Asia. They have been the most amazing daughters and sisters we could have asked for. their adoration for their brother is very obvious. Mason show obvious affection for them as well. Often prefering them over Mommy! That tends to put a proud look on the girls' faces many times.

Currently Asia is 11, in grade 6 at Middle School. She loves having her own locker, and is doing very well in school. She started taking guitar lessions nearly a year ago, and recorded her first song (that she wrote) today!

Sydney just turned 9 and is in grade 4. She and her little friends love to wear scarves as belts and playing with "littlest pet shop" toys. School is more difficult for her, so we were proud of the marks she got on her first report card.

Thank you for your continued thoughts and prayers. God is so good.

Merry Christmas!

Shirley

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.

Hello Friends
Well it’s only nine days until Mason’s surgery. I have had moments of fear about the surgery, quickly brought it before God and it dissipated. (wouldn’t it be great if I did that in all areas of my life, all the time!!!!)
Couple of things happening on the 26th of September, the day before surgery, the first is the MRI in the afternoon.
A very important event in the evening. We will be bringing Mason to the church to the Monday night Pray First Team to be prayed over by the elders and pastors. Others will also be there, including family and friends. If you would like to join us, that would be great! If possible, let me know so I can let them know in advance of how many will come. We are currently planning to be there right at 7 pm.
Ephesians 3:20, 21 has been popping into my head a lot lately:

NIV
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen
Amplified Version:
20 Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]--
21 To Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it).

Bye for now!!
Love & Thanks Shirley
Ps. I don’t mind if you forward this onto others. There can’t be too many people praying for this boy!! There are also some people on my list that the e-mails, for some reason, won’t go through. So if you get this as a forward that’s great!

Surgery Date

August 17, 2005

Hello all,

Summer is going well. We’ve been doing some holidaying, having a great time at a campground. Mason loves, I mean really loves, digging on the gravel lot!

Anyway, we met with the neurologist and neurosurgeon a few weeks ago and here is a quick overview of what will happen:
~Mason will have an MRI on September 26 (1 pm) to determine where the blood vessels are at the top of his head where they will go in.
~Surgery will be on September 27 lasting 3 ½ to 4 hours. The incision will be along the top of his head, front to back, 3 or 4 inches long or so, depending on where the blood vessels are.
~He will be in the hospital 4 or 5 days
~Back at school after about 2 weeks (after surgery)
~They listed off a few possible complications most of which tend to correct themselves shortly
~Permanent complications would depend mostly on if any of the blood vessels that cross the top of the head were nicked or severed. Therefore the MRI the day before to avoid that.
~They will completely sever the corpus callosum (often they will attempt a partial first, but because of the severity of Mason’s lack of development, the issues that would normally be affected, won’t matter)
~Mason is currently having at least 20 to 30 Tonic seizures per day (not counting his blinking seizures) , according to the EEG intensive monitoring we did a little while back. Those are the seizures that take over his whole brain. That includes those that we don’t notice, but only happen in the brain. This surgery will keep the seizure to the side where it began, keeping it to a focal seizure which in Mason looks like blinking most of the time.
~Neuro-Psych testing appointment on August 18. Meeting with the psychologist (9am – 3 pm) to play with toys and talk. This will help further determine what Mason knows, can do, and what ages he is at developmentally in different areas.

Currently, Mason is doing quite well during the day. Mostly blinking seizures so he isn’t wearing a helmet most days. The worst times are between 5 and 9 am, where they seem to go on back to back in clusters. They also increase somewhat after supper.

Daryl remade the sandbox recently, and the backyard is a place of great pleasure for Mason. The girls are enjoying the summer. Both have had their week at Camp Squeah Bible camp. Seeing friends and spending a lot of time at the trailer and swimming there.

We have not felt anxious about the surgery coming up. We are confident that God is in control, whatever the outcome. He has gifted these doctors greatly. We have had nothing but positive things to say about Childrens Hospital here in Vancouver. Mason’s neurologist, Dr. Mary Connolly has been very supportive and humble. As well as being one of the best in her field internationally.

As I look back on our life and the way circumstances, jobs and homes have taken us down different paths, pointing us to where we are today, there can be no question that our Heavenly Father is really looking after us, even in our tendency to be distracted by other things, and we take our focus off Him.

Thank you again for being part of our circle of family, friends, and supporters. (this includes those of you that are not on my current list, but get these updates and information in other ways!!)

Thanks again!!

Love Shirley and Daryl

July18, 2005
Hello all
Well the Dr’s have recommended the corpus callosotomy brain surgery for Mason, as we expected. Daryl and I will meet with the neurologist and neurosurgeon on Wednesday, July 27 to discuss the details. We also have a surgery date for September 27. The timing is perfect, as my sister Kim is getting married on September 24, in Vancouver, and my mom and other sister will be here to help out without having to make an extra trip.
As always, we covet your prayers for wisdom and the right direction for the doctors. Also for the waiting time, that Mason’s seizures won’t get worse, and all the rest involved with something as major as brain surgery.
I’ll let you know more details after our July 27 appointment.

MRI Date

We got the phone call today for an MRI appointment. This Thursday morning. The doctors will be discussing Mason at their next surgery meeting . . I think July 14. It involves several neurologists, neurosurgeon, nurses, psychologists, where they discuss whether the kids are good candidates for the various types of epilepsy surgery. ( I mentioned the corpus callosotomy brain surgery in the last update)

Also, Mason’s nighttime seizures have been increasing. Last night he had one at 1 am, and it looks like he fractured or severely bruised his nose. I had started putting his helmet on around 5 am (he has been having two or three drop seizures between 5 and 8 am – they come on suddenly and he buckles and falls to the floor – often after hitting the window sill first – he likes looking out of his window when he wakes), but now will I spend more of the night in his room. I don’t sleep as well, but Mason is safer that way. So hopefully the possibility of brain surgery will be fast tracked.
Well, thank you for your continued prayers. God really does answer them!!! Time to get ready for going along on Mason’s kindergarten field trip tomorrow!!
Off to White Rock. Forecast – RAIN - !?!?!?!?!?!?

We're home !!!!!!!!!

Hello everyone!!!!!!!
Thank you, Thank you, Thank you, Thank you, Thank you, Thank you . . . for your prayers. Were they ever answered!! But, I’ll start at the beginning . . .
First off the appointment was very nearly cancelled because Mason had been exposed to chicken pox. Potentially very serious for kids that are already sick in the hospital. So they make sure that kids that have been exposed don’t come near. Neurology department over-ruled Infectious Diseases department, because they didn’t want Mason to wait again. That ends up making more work for those on the ward. Gowns, gloves, masks, extra hand washing, etc. And because of this, Mason was hooked up to the EEG on the ward instead of the EEG room. Not as comfortable, etc. The room also reminded Mason of going to Emergency several weeks back.
Screaming began the moment we walked in the door. He settled after a few minutes while we waited for the technician. We always strap him down and wrap him up to keep his arms and legs down. He normally cries and screams while it’s being done, but has tended to settle down partially after a while. This time there was NO settling down. He literally screamed for the entire time. Over an hour. His face was redder than I ever could have imagined. And I have seen him scream and cry before!!! Daryl’s Mom came along and she held down his lower legs. I held down his body. (with our bodies, that is) one technician held his face and head while another tech glued on the EEG leads. (long wires with little discs at the end that are attached to a computer) they glued on 25 (up to 30 in the past). Mason wasn’t the only one who cried. I still find this very emotional to even write about it. Later I noticed that he had a lot of red dots above and below his eyes. Initially I thought it was residue from the marker they use to mark the spots on his head. They were actually spots where tons of blood vessels burst from crying so hard and so long.
That is where the bad stuff ends. The rest of the story is happy with a happy ending . . . .
A few minutes after returning to his room (isolation) he perked up and smiled and was himself for a few minutes. Then the seizures began. Yeah! The more seizures, the more information the doctor would get, and the sooner we could go home. so, over the 24 hour period, he had a lot. A real answer to prayer. It is not uncommon for kids to suddenly not have seizures or have a lot less when they are going for testing, making the process longer. I think he had close to 15 seizures while in the hospital. One was around an hour long, with several different kinds happening during that time. There were a couple of others that were 20 - 40 minutes long. So it was good to see that happen there so the doctor could see them.
Also . . . Mason stayed in his bed the whole time!!!!!!!!!!!!! That is nothing less that a miracle. This is a boy who does not walk. He runs and runs and runs, oh and climbs and climbs and explores. He is constantly on the move. He had to stay in the bed because he was hooked up to a computer and he had to remain in the view of the video camera. The first time he tried to get out of bed was an hour before we left today. Not once in that entire 23 hours prior did Mason even indicate that he wanted to get out. That is so not like him! He also only put his hand to his head a few times, and we would say "no, Mason" and he would put his hand down. No wires pulled or tugged at!!
Daryl came after work for a while, then took his Mom home. My sister Kim came a while before they left and stayed overnight with me. Someone had to constantly be watching Mason because we had to press a button each time a seizure started. We took turns sleeping. Not easy to do with all the bright lights on all night! I got just over 3 hours of sleep in total. Mason on the other hand had no problem sleeping with the lights on. He woke a couple of times because of seizures, but had a great 7 hour stretch in the middle. He was a happy kid through out the whole ordeal after the initial hook up.
After reviewing some of the data, Dr. Connolly told me that it looked like Mason would be a good candidate for the corpus callosotomy brain surgery which has a very good success rate for eliminating drop seizures.
Mason will have an MRI once the chicken pox risk is gone, as well.
The happy ending . . . . we’re home!!!!!!!!!!!!!!!

Thank you so very much for your prayers. God is so good in hearing and answering, isn’t He?!?!?!?
1 Chronicles 16:8-12
Give thanks to the LORD, call on his name;
make known among the nations what he has done.
Sing to him, sing praise to him; tell of all his wonderful acts.
Glory in his holy name; let the hearts of those who seek the LORD rejoice.
Look to the LORD and his strength; seek his face always.
Remember the wonders he has done, his miracles, and the judgments he pronounced,
Love, Shirley

Coming up

Hello
Last time around a let you know of a couple of events coming up for Mason. The dental appointment went great. They first put him to sleep with gas before giving him the IV. J no pain for the boy!! He came out of it with 6 minor fillings, and a halloween pumpkin smile. He had lost a tooth the week before, one other adult tooth was halfway in, then had two loose teeth pulled while at the hospital. It all went very well. Great recovery. Actually I was hoping he would be a little more sleepy. Not.
Today is the day we are going in to Childrens Hospital overnight for Intensive Monitoring. About 30 little wires will be glued to his head for an EEG to read the electrical activity in his brain. He will be videoed during this time as well. The hard part will be keeping this EXTREMELY active boy in a small area to capture every move on video for 24 hours or so. (pray that he will have LOTS of seizures during this time so we don’t have to stay longer) Our appointment begins at 1 pm this afternoon. It was nearly canceled because Mason was exposed to chicken pox last week, miraculously, they are letting him in, although it put them through more work keeping him in isolation etc.
Gotta run, now, and get the kids off to school. Thanks for your continued prayers and thoughts. !!!

Hi,

I just want to send out a quick note to let you know what’s been happening.

On Thursday night, May 5, Mason started having a seizure at supper time, and it kept going on, - not eating, staring, blinking, drooling etc. After a few minutes, I felt his forehead and noticed it was warm. I gave him Tylenol, he continued the seizure. His fever kept going up slowly. He seemed to have moments where it looked like it was ending. After a while, I phoned the neurologist on call at Childrens Hospital and he recommended that we call an ambulance, so we did. Because this was something we had not experienced before, and we didn’t want to wait at the ER, and we did not know what could happen between home and the hospital, the ambulance was the right choice. We got in very quickly. They put a saline IV in and eventually the fluids and another dose of Tylenol finally started to bring Mason’s temperature down. finally he fell asleep at 11 pm. (the seizure kept him awake). This is called non-convulsive status epilepticus. The definition is a seizure that does not stop. Mason’s lasted for 5 hours. He slept a lot the next day.

After talking to the nurse and doctor over the next few days, they called Mason in for the following Wednesday to train me on a rectally administered drug to stop the seizures at home. Normally Valium or Ativan (for you nurses out there) are used, but they don’t work on Mason. We don’t know if this one would either, but we’ll try.

Next week I’ll be training the teachers and TA’s at school in what to look for and when to call me or an ambulance. We have something in place already, but not for this type of seizure.

Tomorrow morning, Friday, Mason will be in the local hospital for dental work. He won’t let the dentist in, so he will be put to sleep for cleaning and suspected cavities.

June 6 will begin a new round of testing for Mason. Intensive Monitoring (an EEG – 30 or so wires attached to his head – while being monitored on video) the room is booked for 5 days, but we expect Mason to give ample information within 24 hours, for the number of seizures he has.

He will also have an MRI hopefully during our stay there, as well.

The Dr will also be investigating chromosome deficiencies.

After all that, the information will indicate if he is a candidate for brain surgery. A different kind than we looked into a few years ago. We will be considering Corpus Callosotomy, which would separate the communication between the left and right brain. There is an 80% chance of eliminating or greatly reducing Mason’s drop seizures, which he has 2 – 5 of each day. Currently he wears a helmet nearly all the time.

That’s all the basic information of what’s going on here.

It has not been an easy time lately in general with the seizures on the rise, as well as the additional emergency issues and preparing for future emergencies. I’m tired from what has been going on (although a short visit from my mom, new step-dad, and former neighbors in the middle of all this was a perk!) an get tired thinking about what is coming up, never mind all the unknown worries. Although I know that all of it is in the control of our Heavenly Father, and that knowledge does not sway at all, it is emotionally and physically draining.

I just ask that you will remember us often in your prayers often, especially over the next couple of months. I’ll keep you up to date on what is going on.

Thanks, love Shirley

Celebrate with a Banquet!!!

Hello praying friends and family

I was going to sit down and let you know about a very important prayer request. But God answered it today. So now it's time to celebrate!!! I am feeling very excited at this moment. Here's the story:

I have been trying to get extra Teacher Assistant time for Mason at school. He has only been allocated 2.5 hours and he is there all day, so that means time has to get pulled from other kids for safety reasons. Although he does have someone near him all the time, 2/3 of the day he and other children share this person. Sometimes there are only a couple of adults in the special ed room, which does not insure that someone is near Mason. As he is having between 8 and 13 seizures per day, he needs someone right there for his safety. Getting extra TA time at this time of year is nearly non-existent. So I knew that getting this would need divine intervention.

The first miracle was finally (after weeks of trying) getting an appointment with the person at the school district, which is slated for this Thursday, April 7. Well that person went to our school yesterday (Monday), and the special ed teacher was told Mason would get one more hour per day, starting today. This is still not full one on one, but will make the end of the day
a lot more manageable and give a little more attention to the other students who also need TA time. Can you imagine getting 7 or so children with special needs ready at the end of the day to go home? I find it exhausting with one!!

And, Mason will get the full time amount for next year!! 5.5 hours. Yeah!!!!!! The meeting is still on for Thursday, but she doesn't know that I know.

Another surprise we got last week, and I need more details yet, is some one time only unexpected funding through Mason's social worker. It is designated as behavioral intervention. There is a contract with an organization that will analyze his behavior and figure out strategies to work with him.

So, wow! Isn't that exciting?? God tends to do the unexpected. And to answer this prayers early, well, that's unexpected!

So some of this very thrilling news came on a very difficult day. Yesterday morning Mason had a 45 minute seizure before school. It consisted of two seizure types, blinking, and myoclonic jerks randomly throughout that time. These happen several times per day, but not often that they last that long. During this time he smashed his chin on the bathroom sink so hard that he
has a big scrape on the bottom of in. I heard the smack and it sounded awful. I was only an inch away from him and could not prevent it. That jerk came on so suddenly. The duration of this seizure made us miss the bus, so I drove the kids to school. When I got there, there was a van
blocking the handicap parking spot, I showed the woman my handicap pass, and she refused to move. She ended up moving back a foot or so, but not nearly enough space for me to get through. Then she took her child in to the school. This is also a drop off only lane. So I sat there waiting in shock and disbelief. When she finally came back, and left, I pulled in and burst
into tears. I had to go into the school that way. Beat red, face wet (I couldn't stop crying, nor could I wipe my tears for holding onto Mason and his stuff). someone asked me if I went and talked to her. No. I was actually speechless, believe it or not. That's probably a built in
mechanism that kept me from tearing a strip off her. I was a smidge angry.


Then at the end of the day, Mason had a strong Tonic seizure (stiff for 45 seconds) where he has difficulty breathing, smashed his head on the computer where he was sitting. Poor kid. I picked him up at school, where he was still groggy half an hour later from it.

Several weeks ago he also started having Tonic Clonic seizures. (Grand Mal) So now he has five different types on a regular basis We continue to mess around with his meds. He may have a day or two here and there that go down to 6 maybe, but medically he is not in a good place right now. His behavior was extremely bad a couple of months ago. Very hyper. And generally difficult. So much work. That has been easing up, and I actually enjoyed him over spring break! Christmas was that last time that was possible. He is still a lot of work, but does have longer periods where he will play well. (it was down to about 20 seconds attention span to play, for several months)

If you are interested in learning more about Mason's type of Epilepsy:

http://www.epilepsy.com/epilepsy/epilepsy_lennoxgastaut.html

What I keep finding interesting over the years, is that even though this medical problem has not gone away, usually in those darkest hours, there is an amazing, unexpected banquet that comes before me. Cool, eh?

Even though I walk through the valley of the shadow of death, I will fear no evil,for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. Psalm 23

So thanks for your time, your prayers and thoughts. I feel so spoiled with
a wonderful husband, special daughters, and a cheerful-in-spite-of-it-all
son. Add to that all our friends and family supporting us like this.

Blessed be the name of the Lord!!!

Hyper Kid

Mason is driving me CRAZY!!
He went off Lamictal last week and has kicked into hyper active!! When he comes home from school, it’s like he shoots out of a cannon!!!! Even though he was on a low dose, it must have been more sedating than I thought. I started him on Keppra (at bedtime) a few days later, and he is sleeping extremely well at night. Either from the sedation of it, or it is reducing the night seizures. Not sure. I will know more next weekend when he starts a morning dose as well. Seizures are at 7 or 9 per day right now. But a happy kid as always!!

Computer Games

The tiny little steps of progress with Mason are always huge events to write about. So that's what I'm about to do.

First the background ~ Mason has learned to use the computer at school. He can easily make his way around Reader Rabbit Toddler, a program for ages 1 - 3. So we set up our old slow computer for him at home over Christmas. He has been playing on it off and on during the day. First thing, he will get one of the dining chairs and bring it to the desk. Next he gets a second one for me or another person to sit on. He likes having someone next to him sometimes.

Yesterday, I had rolled the desk (on castors) into our bedroom, thinking that Mason could go a whole morning without the computer. After breakfast, Mason went a got a chair and put it in front of where the computer normally sits. Then he got the second one and placed it beside the spot the computer normally sits. Then he took my hand and plunked me down in the guest chair. Then he stood and looked at the blank wall where the computer should be. I said "no computer" and he began to cry. He followed me as I walked past the front door, then lay down on the floor to cry some more. I said, once again, "no computer". He cried a bit more, then suddenly stopped crying, looked directly at me and clearly said," La la?" That's his word for computer. How could I say no again after that?

The hugeness of the event is his clear verbal communication. Because his speech is so extremely limited, his communication lies in crying (like a baby does) or taking our hand and leading us to what he wants. I always try to make him verbalize his request, even though he uses the same one or two generic words in his request. But this is the first time he verbalized a request without being promted first.

A very exciting day for us! It's so neat to see his brain working and thinking!

New Year Update

Happy New Year!!

We have kept extremely low key over the holidays this year. It has been very relaxing after a busy fall. School kicks in again in two days, along with soccer, Oasis (women’s bible study and worship at our church Wednesday mornings), and anything else that may show up!

Mason has been doing extremely well going off the diet. His seizures have come down a bit. So he is having between 5 and 8 per day right now. His behavior has improved dramatically! He is very happy all day, which is a surprise, because he has been at home most of the time, other than a couple of times to Grandpa and Grandma’s home. he has also been playing Reader Rabbit Toddler on the computer. We hooked up an old computer for Mason, and it’s amazing how well he knows what to do!! The program is made for kids ages 1 – 3. Mason’s development lies between ages 1 – 2. My niece just turned two, and it is amazing how alike Mason and Ava are in many ways.

Regarding food, Mason had pizza for the first time tonight. He’s had a couple of Ritz crackers in the last two days, otherwise no breads yet. He is still mostly having foods that are low carb, as listed on the ketogenic diet, but quantities are not limited. No cream or oil, No weighing, no worrying that he might pick up something and eat it that he’s not allowed. After everything has been so controlled for six months it has felt quite strange having freedom.

Over all, this has been a wonderful Christmas! (in spite of the cough I’ve had since November as well as a head cold over Christmas, a case of head lice on one child of ours, and just plain being tired)

Thank you for your past and continued prayers!

May God richly bless you with His peace this year!!!

Love Shirley

Ketogenic Diet

We went to see Dr. Farrell, the ketogenic diet neurologist today.

The appointment went so smoothly!! But it didn’t happen without your prayers!!

When we went into the appointment, the Dr. reviewed the seizures, charts and medications, looked up at me and said, “So, what would you like to do next?” I was expecting him to tell me his opinion first then ask me that question! I told him I wanted to go off the diet. It had worked in the beginning, but it has now lost its effectiveness. He said, “OK.”. Simple as that!!

Then he talked about how long to take to come off the diet. I was expecting them to say 2 or 3 months. He said, 2 or 3 weeks. That means Mason will be able to have turkey dinner with us at Christmas!!!!!!!! He won’t be eating cookies and stuff too much then yet.

After that has settled down, we’ll continue going down on meds, as it works.

The Dr. also asked something to the effect of what I’d like to do in the future. So we talked about a couple of things.

So today I felt like I received everything on my wish list, and more! Going off the diet without any opposition from the medical professionals, and doing it quickly. And just in general having increasing input in the direction of what to try in the future.

Although it may seem that we are back at square one again with the seizures, we have did have a short reprieve from the severity of them. As well, we have seen some significant development progress compared to the previous four years, in which there has been very limited advancement. He has become a little more alert and aware of himself and what goes on around him, picked up a few new words, and learned routines (although current tantrum behavior interferes with that).

His current stage of “terrible twos” tantrums and screaming are excruciatingly hard to deal with, yet they are progress in development. ( no I haven’t lost my mind . . . permanently) I believe there was enough of a reprieve from the seizures this summer and fall to allow Mason to move forward into this next phase. A toddler throws tantrums and screaming fits because he is exerting his new awareness of self and will and becoming more aware of his ability to control and make “decisions”. So there, . . . . the terrible two’s are a good thing! The hard thing is that Mason tends to stay in a stage about ten times longer (or more) than a typical child.

So this Christmas, as you sit at the dinner table with your families, remember Mason for just a few seconds - eating foods like turkey, mashed potatoes, gravy, stuffing, corn, and just a taste of a cookie for the first time in half a year. He will not have to eat any butter and oil that day!!

So now I wish you a most wonderful time preparing for Christmas to celebrate the birth of Jesus!

THANK YOU so much for your many prayers, and please continue. The future is still filled with great uncertainty, but God has each day planned for us, and He will prosper us with hope and a future. We have called upon Him, and He HAS answered!!!! Jeremiah 29:11 & 12

Blessed be the Name of the Lord!!!

Love Shirley

E-mail updates

I am posting the last three email updates I sent out:
November 9, 2004
Here I am again, asking you for a moment of your time to pray for us. I always have two reasons for sending out these e-mails regarding Mason. One is that so many of you ask about him, I for that I am extremely grateful, so I want to keep you updated. The second is that we need you to call on the Name of the Lord on our behalf. For that I also thank you.

We’re going down that road again. Mason’s seizures have been increasing dramatically in numbers, and in severity. I really feel at a loss for knowing what the next step is. Although there are more medications to experiment with, a positive prognosis is extremely unlikely. Do I sound discouraged? Well, I am, in regards to what is happening with our little boy. I’ll never get used to the emotional roller coaster ride that we go on so regularly.

Yet, I know that my Father is faithful. He is faithful to always be here for us. I choose to say Blessed Be Your Name, Father, Jesus, Holy Spirit.

This is my favorite song:

Blessed be Your name in the land that is plentiful ~ Where Your streams of abundance flow ~ Blessed be Your name ~ And blessed be Your name when I’m found in the desert place ~ Though I walk through the wilderness ~ Blessed be your name ~ Every blessing You pour out I’ll turn back to praise ~ And when the darkness closes in Lord ~ Still I will say ~Blessed be the name of the Lord ~ Blessed be Your name ~ Blessed be the name of the Lord ~ Blessed be Your glorious name ~ Blessed be Your name when the sun’s shining down on me ~ When the world’s “all as it should be” ~ Blessed be Your name ~ And blessed be Your name on the road marked with suffering ~ Though there’s pain in the offering ~ Blessed be Your name ~ You give and take away ~ You give and take away ~ My heart will choose to say ~ Lord, blessed be Your name

Thanks for your prayers, Shirley and Daryl

November 30
Hello,

Just a quick note to let you know where Mason is at right now.

He continues to have between 6 and 9 seizures per day, not including the 1 or 2 each night that I suspect. This is in spite of tweaking his diet and reducing meds a bit. As the seizures increase, his behavior becomes more unmanageable. A lot of screaming, crying and tantrums. He has to leave kindergarten a lot these days – to go into the special ed room – which is a fun room, but not integrated. A matter of a few weeks ago Mason was in the K room nearly the whole morning, doing what the other kids were doing, great focus, following routines and directions extremely well.

Tomorrow, Wednesday, he will be fasting for 24 hours to help the neurologist decide to continue on the diet or begin the process of quitting it.

So while Mason is fasting, will you pray? He knows how to say “amen” so I guess he will be praying and fasting!! J

We will most likely be going in to see the neurologist in December to see what to do next. I have some treatments I want to ask him about.

Pray for God’s wisdom and understanding for me and Daryl, the doctor, nurses, and dietician, who are all involved in the decision process. And for my sanity. The bottom is dropping out from under us again.

I have a most wonderful family. Daryl is so supportive of what I do with Mason, Asia and Sydney are amazingly understanding for their age. Bedtime is usually very easy for Mason, but yesterday he fought it quite hard. When I finally emerged from his room, the girls were standing in the middle of the living room with little grins on. They had cleaned up all the toys, set the chairs straight, etc. The message on the magna-doodle said, “we wanted to help you mommy. Love Asia and Sydney”.

Thanks for your support!!!!!!!!!!!
Shirley

December 1
Thanks for your prayers today!!

Mason did very well with fasting. He did not indicate that he was hungry all day until bedtime, at which time he was finally allowed to eat. During school he was either extremely cranky or extremely happy. No middle ground. He came home around lunch time, had a great nap and was in a great mood for most of the evening. He had five seizures, so still close to normal range, I don’t know yet if we will continue the diet, or if it’s worth a shot to continue a little longer. I don’t mind doing it if I know it’s working, even in part.

There are some of you that forward this on to care groups or others you know. That is great! Enlarge that territory of prayer. Some of you even fasted today along with Mason. WOW! My heart (and eyes) are really touched.

I had to pop in at a store with Mason today and while I pushed him down the isle, he put his hands together up on his forehead said a few “words” then said “amen”. A minute later he ”prayed” a longer prayer, which turned into a song. Although I could not understand a single word, other than amen, God knew. And now, although I don’t understand what is going on, God knows. That is where I rest. That is why I can agree with Job and truly say, Blessed be the Name of the Lord.

Thanks so much for your continued prayers.
Love Shirley

Jesus in the Boat

I spoke with my friend Janelle this morning. Her little girl has a severe chronic condition and had taken a very bad turn. My heart broke for her. Then she asked about Mason and she found out that Mason had taken a bad turn as well. (seven seizures in one day, with a dramatic increase in his tonic drop seizures)

To which Janelle responded with "I guess we're in the same boat today."

The next moment she burst into a familiar kids song - "With Jesus in the boat we can smile at the storm, smile at the storm, smile at the storm!"

You have to realize we were two mom's with tears running down our faces when we both burst into laughter.

This day has not been easy. We went into Childrens Hospital in the afternoon to weigh Mason. In the next day or two we will decide if we will restrict his diet yet more, or think about another medication. There really are very few, if any, options left.

Although it looks like another hurricane is comming our way, Jesus is in our boat.

More Seizures

Poor little Mason. He has been suffering from a really bad cold. He NEVER gets sick. But now that he is in kindergarten all day, he is exposed to that stuff so much more. The last cold he had was in only one nostril, and lasted only a few days. This one came with a cough, fever, goopy nose, etc. He missed two days of school, one of which he slept most of the day. Back to school today, and what a cranky kid he was!

His seizures have increased again in the last several weeks. In summer he was down to two or three per week. Now he is back at four or so per day. He has three kinds happening right now. Blinking, myoclonic (clusters of short body jerks), and tonic drops (goes completely stiff up to 10 or 20 seconds). They don't come as fast and hard as they did last year.

In spite of the seizures, he is continuation to learn! :-) For the longest time he said a nasally "hang" for thanks. A few weeks ago it turned to "ha gung". In the last few days it's closer to "hang hoo" for thank you. And he says teacher in school! Well, his version of it.

He naps in school, plays outside, spends most of the morning in the kindergarten classroom, sits well at his desk, follows routine well. Going on the bus is a definite highlight!

Two Buddy's

The two Buddy's are becoming better buds!! (We have called Mason, Buddy since he was a baby causing us confusion now!) Because of Mason's unpredictable behavior, he can at times become too rough with Buddy, causing Buddy to avoid Mason more. Over the last few days that has begun to change. It started off with Mason playing with his squeaky fish. It turns out that nothing gets Buddy more excited than the "squeak". Those two had the time of their life for about twenty minutes taking that thing from each other. Mason howled with laughter, while Buddy jumped and ran around like crazy! After that Buddy has been checking Mason out more. When Mason throws a temper tantrum, Buddy comes over and starts sniffing his head, tickling Mason, quickly causing severe giggles. We are working at teaching Mason how to play with a dog. They have some other similar interests as well. Mason made his way into the garage today, and made a bee-line for the car, opened the door and climbed in. Buddy was right there, too. So there they sat in the back seat, waiting to go bye-bye. I couldn't drag either of them out, so they sat there for a bit. I couldn't find the camera quick enough, but next time (and I'm sure there will be a next time!!!) I find those two in there, I will take a picture!

School - day five

Each day is getting better for Mason as he gets used to school. Friday I decided to stay to see if that would lessen his anxiety. (his seizures have been increasing because of the stress) It actually made it worse, so now I cut it quick at the door. A cute little story though . . . we ( me, Mason and his special needsteacher- Ms. S) had been walking down the hall, went into the kindergarten room a bit, then to the water fountain just outside the door. I pressed the button so Mason could drink. It went up his nose a few times which he thought was very funny. After a couple of minutes, I signalled Ms. S to come and press the button. I didn't move, and she stood behind him and pressed the button without him noticing it. Shortly Mason did notice! He grabbed her hand and shoved it back. Grabbed my hand and put it on the button and kept his hand on my hand. He knew what we were up to, and was not going to let us pull the wool over his eyes again!!!

Yesterday he pulled me into the classroom but cried as I left. Apparently he stopped within a minute or two.

Today he made a couple of quick complaining sounds before going into the classroom. Once again he pulled me into the classroom, only this time HE let go of my hand as he stepped through the door!! He did not cry at all!! Very exciting!!

Keep on praying, children of God!!!

Buddy

After years of saying no to my family, I caved in and now we have a dog. Well, it wasn't exactly caving in, as I was the one who initiated it. Every one who knows me is in shock! Can I tell you the whole story? A few years ago I read about seizure dogs, and decided that that would be a good reason to get a dog. It also had to meet my long list of criteria. Trained, well behaved, not jumping on people, quiet, no shedding, small but tough, maybe a few other things. Recently I read an article in the local newspaper about a man who trains fox terriers for children with certain kinds of special needs for free. I gave him a call, and he brought Buddy over the next day. He seemed to target in on Mason quite quickly. So now we have a dog! This is a very special thing for someone to put all that work and cost into training a dog, to give it away to someone else's child!




Although we could see there was an initial attraction between the boy and the dog, right now Buddy is a little scared of Mason at times. That is because Mason does not behave as a typical child, petting and playing with animals. There will be some work involved in training Mason how to play with Buddy, but I think it is very possible. Especially as the girls get older and more involved with their sports and friends. There are those kinds of things that Mason will not be likely to do much, especially in the next number of years.

Buddy is a great dog. He is very social, will jump straight up in the air, but not onto people, unless by mistake if he is too excited. He loves going for car rides, he went along to Childrens Hospital last week and did great!! He also has Service Animal papers, so we just need to get a vest to that effect and we can take him anywhere. Mason can be kinda rough on Buddy, but really likes him. He does shed a little, but i can deal with that.

SOme of the goals for the future of Buddy with Mason, first off to be companions, guarding Mason from danger, or running off. It would really be great if Buddy would recognize the onset of a seizure, as some dogs are capable of doing.

I look forward to telling you more stories of a boy and his dog!

Back to School

Hello! We have discovered an new and easy way to keep you updated on Mason's progress! Previously with Mason's Web ( www.bluesticker.com/mason ) I had to have Daryl post what I wanted, which was a lot of work for him. This, even I can do!!




Well, Mason has started kindergarten. What an adventure! First I need to back track a bit. Last year when he started pre-school, he sailed right into that room, said bye to me and had the time of his life! He has always entered new territory without a look back. Since starting the ketogenic diet, his seizures have been reduced a lot and that has also increased his alertness, and awareness of his surroundings. He is saying more words, and just plain progressing at a slightly faster speed. That is a fabulous thing!! The other side, is that with being more aware of his surroundings, separation anxiety has kicked in . . . big time. Two weeks before school!!

Anyway, the first few days have been quite rocky for Mason. He screams with everything he's got initially, but does settle down shortly after I leave and has a good time. When I pick him up, he gives me the biggest hugs of his lifetime! His seizures have increased because of all this anxiety, but his nurse has recommended to continue as we are and hopefully the seizures settle down quickly and Mason gets over the separation soon. The teachers involved with Mason at school are great at accommodating his needs. I know he'll do fine in a little while. Me too! Yesterday he cried a total of less than 5 minutes, I was told. My reply:" So, I cried more than he did!" Apparently kindergarten moms are allowed to do that. Especially if it is their last child.

He will be in the all day kindergarten program. The plan is for him to be in the kindergarten classroom in the morning and the resource room (special needs) for lunch and the afternoon. So we will work into that. So far he is there for about two and a half hours.

With this as my first official entry I shall say good night, and look up other stuff I have written about Mason and post it in the near future. Bye!

Mason on the ketogenic diet

We have completed the second day of the ketogenic diet. We have to be at Childrens Hospital four days in a row for most of the day for teaching the parents and watching Mason closely as his body adjusts to the changes. He fasted for part of the first day, and had a special drink (tiny amount) for lunch and later for supper at home. The ratio of his food is about 90% fat with the remaining 10% consisting of a combination of carbohydrates and protein. He will have whipping cream, butter, and oil in each meal, along with small amounts of certain veggies and meat, egg, or cheese. Everything has to be weighed to the .1 gram. For example I prepared a beaten egg for him for supper. It weighed 47.4 grams, and he could have 41 grams, so I discarded 6.4 grams of the egg. Along with 33 grams of green pepper(about 1/3 cup), 11 grams of butter (about 1 tablespoon), 10 grams of canola oil (about one tablespoon), and 25 grams of whipping cream (36% had to be special ordered). Part of the whipping cream went into the "omelet" while the rest was mixed with a measured amount of water (fluids are limited, although a fair amount) a couple of drops of stevia sweetener (only certain brands allowed) and a drop of vanilla for flavor. I scraped the oil and butter with a rubber spatula from his plate at the end of his meal to feed it to him, to make sure he got the entire amount. It took me a long time to prepare it!! I have to test Mason's blood sugars for a few days (it's really good so far), as well as check hi urine for ketosis many times per day initially, then morning and bedtime on a regular basis after that. He reached the right level of ketosis this morning (ahead of schedule) so that he could have a full, real keto meal for supper. Otherwise he would not have been able to eat until tomorrow. The quick version, this diet tricks the body into thinking that it is starving, causing ketosis - a chemical produced when fat us burned for fuel. For unknown reasons, this seems to help some children with difficult to control seizures. If you are really curious there is more information at the following website. http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/
A ketogenic story: http://www.jhu.edu/~jhumag/495web/fat.html
What a blessing it is that we have wonderful friends to take Asia and Sydney after school, friends and family to come along to the hospital, and others who are bringing meals. Today after I got home, I thought, "hey I would have been able to make supper, no problem!" then when Daryl and I didn't get to eat until 7 pm, I realized, no, I couldn't have done it today. So the combination of help and prayer, cooks up just the right concoction for what God knows we need!! As a 'refining fire' in our lives, this experience will require me to become extremely organized and structured. Eeeeeeeeeek!!!!!!!! My personality is the opposite, laid back and spontaneous. Mason will have to eat at certain times, and the rest of us will have to be very careful in what we eat around him, including food preparation. It will be a lot of work yet, but worth it in the end when we find out one way or another if this is the answer. Thanks again for your thoughts and prayers!!!!! Shirley

April 2004

April 2004

Mason has just turned 5 and has been registered for Kindergarten for September of 2004. He is eligible for all day kindergarten where he will remain in the regular classroom for the morning and have lunch and a nap and the afternoon in the Special Needs classroom. He is so ready for it. Currently he is in pre-school three mornings per week, and is quite bored at home when the girls are not here. His Epilepsy continues to keep one step ahead of the doctors. He has recently started his tenth treatment. Currently he is on three medications and continues the VNS. In June of 2002 Mason had surgery to implant a Vagal nerve stimulator in an attempt to control his seizures. This is like a pacemaker under his skin in his chest, wired to the Vagal nerve, sending electrical impulses to his brain every few minutes. (look at May 2000 update) They were reduced for a time, but as in all of his meds, the seizures increased again. A year ago we attempted alternative therapy with Mannatech supplements which very quickly quadrupled the number of daily seizures. Over the years we have had many suggestions in alternative treatments, but none are formally documented, so we usually stay away. Some work for some, but we won’t be attempting anything else unless closely supervised by our Neurologist (Whom, we have found out recently, is world renown for her work. We are thankful to God who has provided us with the best!)

The number of Mason’s seizures varies from week to week, month to month. He has not gone a day without one for . . . I can’t even remember. December 2003, on new meds, he went down to one or two per day. That was wonderful! After gradually changing in length and appearance for about eight months, shortly after we moved this fall, his seizures suddenly happened very quickly and became more intense. When he started falling with them last spring he would buckle first and land in a sitting position. Now he would suddenly drop and usually hit his head on the floor. He was having from four to six or more per day, and began wearing a helmet most of the time. Right now he is not wearing a helmet because the new meds have slowed down the seizures enough that Mason sits when he feels it coming on. That’s my theory, anyway. March update on seizures: after having the flu, Mason had three days in a row without me seeing a seizure. That hasn’t happened in at least three years.

As of April 10, we increased meds again, as Mason’s seizures have once again been changing, slowing down, but longer in time. He has also added a new one in the last couple of days. Long blinks. I know they are seizures because of the way the rest of his face gets this blank look or the way his eyes move just before or after the blink.

We had the opportunity to build a house last year. Our previous home sold very quickly, so off we were designing and building. Moving into our new house was quite a pleasant experience in spreading our wings! You can imagine!! We designed this house pretty much around Mason and his abilities and disabilities. His ability to pick locks and escape inspired us to put keyed locks on all the doors on the main floor, including double keyed dead bolts. Mason’s ability to climb as high as possible, has our dining table in storage at Auntie Kim’s place. We designed the kitchen in such a way that we have a raised eating counter that seats seven or eight comfortably. The open design and well placed mirror allows us to know what our trouble maker is up to quite easily. Mason’s room is on the main floor facing the street, where all the activity entertains him when he is ‘supposed’ to be sleeping. Our bedroom is also on the main floor so that I can quickly get to him at night when he is up. The girls’ bedrooms are upstairs, and I must say that they are quite enjoying their own space. The stairs are gated so that Mason can’t go up the stairs but it also gives a place for Asia and Sydney to play with their stuff and protect it from their destructive little brother. Going outside is just one small step into a flat back yard, so Mason will be able to play outside on his own, yet still in full view from inside. And as much as we have made it a ‘Mason proof’ home, he continues to find and conquer new challenges.

Although it’s been quite a while since I updated this web site, I thank you for visiting again. Thank you for your thoughts and prayers, for without them we would not be where we are right now.

May 2004

A quickie update about Mason. After doing quite well for nearly three months (only 1 - 3 seizures per day and sleeping through most nights - new meds since December) Mason’s seizures have been getting worse, so we have increased the newest med, but behavior and extreme emotional issues have developed. Extremely cranky or extremely hyper. We cannot take our eyes off him for even a few seconds at this time. Recently he climbed up the outside of the stairs as high as the second floor. ( although we thought of almost everything in designing this house, we missed one or two things) I ran up quickly, grabbed him, brought him back down, and a minute later he attempted it again. Absolutely no fear or sense of danger. He quite enjoyed it up there. It left me shaking for quite a while, and I cried many times throughout the day.

The next thing on our agenda is trying the Ketogenic diet. Basically it is 90% fat, derived from foods like whipping cream, butter, eggs, bacon, mayonnaise etc. Everything he eats or drinks is weighed to the gram and eaten at specific times. Eating even a cracker would through the whole thing off. Their success rate is in the range of 10 - 15 percent. We will begin June 21 and will be going in to Childrens Hospital for the first four or five days all day for training and watching Mason closely. They used to keep the kids overnight during the first week, but is now on an outpatient basis.

Mason’s seizure “type” is beginning to change, which is expected with Infantile Spasms (IS), his initial diagnosis. The neurologist said it is looking like it’s changing to Lennox-Gastaut Syndrome. The prognosis is about the same as IS, and not a surprise to us.

As for the girls, Asia made the Rep Soccer team (where they play other cities) for next year. It means more driving for us, but it’s something she really wanted. Sydney has also decided to continue playing soccer. I don’t know if she’ll love it as much as Asia does, but Sydney’s best friend is playing, so . . . . . Both girls continue to be incredibly great big sisters to Mason.