End of June

Hello

A few weeks ago, I let you know about our new adventures with “Jello Boy”. It’s been a very challenging time, but look! We’re surviving!!! The tough part has been remaining consistent in our follow through in what we say to Mason and expect of him. Gradually he is cooperating a little more again . . . some of the time. Here are a few big highlights in the last week or two:

• Tonight is the fourth evening in a row that Mason has gone to sleep on his own. Due to the anxiety he’s had since surgery, he would get quite hysterical if he was left alone in his room. We’ve been tucking him in and leaving the room with his door open. He can hear us, and we say something to him occasionally to reassure him we’re still here. Before surgery, I always felt that even if it had been a seizure/behavior day from ____, at least he went to bed so easy. I have now been reminded how that changes the whole dynamics of the rest of the evening!! It’s much more relaxing again.
  
• A few nights ago he slept through the WHOLE NIGHT!
  
• Last week Mason said his first 3 word sentence! Ma ree boon. (there were distinct thoughtful pauses between each word) Mommy read Goodnight Moon. His favorite book. He loves books!!!
  
• He has started speech therapy, and he is doing soooo well. His second time there, he would not get out of the car. Finally, I hauled him out, and when we got closer to the door, I told him to ring the doorbell, knowing that it would get him to the door. He pressed that button, yelled, ”Awdone! (all done)” and he zipped around and RAN to the car.”
  
• Sydney played “The Sound of Music” at her piano recital without a single mistake. She started taking lessons in February this year. She had to learn 10 different cords – including minors, and flats. She also won an award from her teacher for “Most Promising Student” That, together with a few other good things happening in school has been amazing in boosting her self esteem in recent months. It had been declining prior to that, due in part to a false perception of herself!
  
• Asia wrote and recorded a song and has a CD! Although getting her to practice her electric guitar is difficult at times, she too, has musical talent. Next year she also wants to take drum lessons. I think we may need to double up the door to the bonus room upstairs!!
  
  Only two weeks of school left. I am not as nervous about this summer as last year. Mason is much easier behavior-wise, and the worries over the seizures and all that entailed are gone. (helmet, injuries, seizures that would go on for hours, etc) It’s good for me to check back on the blog to last year to be reminded how good it is now. Having some mild seizures at night, occasionally extra mild ones during the day is a picnic.
  
  We co-own a trailer with my parents (Marge and Dick) an hour across the border since mid-last summer. It has become a favorite vacation hotspot for us. It’s an oldie, with a sunroom add-on, sitting on a large gravel lot, backing onto green-belt, in a complex with a great swimming pool. It’s easy to bring Mason there, he loves digging in the gravel, campfires, swimming (at least he did last year), and going for walks to the play ground. I find he gets bored in on place too long, so we’ll be sending a few days there, a few days home and go back and forth like that all summer. The girls love biking through the (security gated) campground, have made friends with a really nice Christian family two spots over, and we have the friends that “introduced” us to Whatcom Meadows last year, very nearby. Hotels are extremely difficult for Mason, so this is the best option for our family as a whole. The kids all love roasting hotdogs and marshmallows nearly every night we’re down here. I let Mason roast one (with my help sort of) last time. Flambé. When I wouldn’t let him do more, he went over to the table, took a couple of mm’s out of the bag and tossed them straight into the fire! Skip the stick!
  
  Well, it’s the end of Father’s Day. Daryl had a nice relaxing day today, well deserved!
  
  G’night

Still Moving Forward!

Well, things are continuing on the upswing in Mason’s life, in spite of a slight increase in seizures and I emphasize slight! They are still less intense than they have ever been even at their weakest.

Every week we see new things. In the last few weeks we have seen a dramatic increase in speech, in fact, non stop. Mason is trying to say everything we say, lots of repitition, and communication. Nearly all the words he says are partial most often saying the first part of the word. He has had one session with a speech therapist, and we’ll start up weekly once the paperwork for funding comes through.

Mason still wakes 1 – 3 times each night because of a seizure, althought very occasionally he will sleep until 4 or 6 am. Daryl and I take turns sleeping with him for the remainder of the night after he wakes up, so those are not restful nights sleeping with Mason. Before the surgery he never had a problem going to sleep on his own. But after surgery he became so much more aware that fear and anxiety set in. His imagination must also be increasing, because he seems to have a bad dream occasionally. He wakes up crying differently.

This week we have been catapulted into the “terrible twos”. We’ve been there a few times over the years, but Mason was always easy to distract. Now his general attention span is much longer, and so is his will to do as he pleases. Have you ever tried to BBQ jello? Yeah, doesn’t work, but that’s easier to do than to get Mason to cooperate with us now. A few months ago I mentioned that “time out” is the best thing that has happened here. This week that went out the window. At least two year olds are easy to pick up and handle. Not so with a seven year old weighing fifty-five pounds. Developmentally this is fantastic!! In the past it would last for a little while, then he’d regress again. This time I believe it will continue. . . . for a longgggggg time. We’ll make it through, knowing that good will come of it! J (God, You promised!!)

Mason is off nitrazepam!!!! Yep, he was irritable and moody coming off, but nothing we couldn’t handle. Thanks so very much for your prayers!!

E-mail is such a neat thing! I know we are covered by so many of you in prayer. And in reverse, we get the opportunity to pray for you. Many thanks go to God for you, and we feel privileged to pray for you when you send an e-mail, whether it’s a quick hello, or you too are in need of prayer.

Galatians 6:2 (NLT) Says:
Share each other's troubles and problems, and in this way obey the law of Christ.

So thank you for obeying the law of Christ

and giving us the opportunity to do so as well.

First EEG Post-Surgery

Well, after torturing the boy by keeping him up until nearly midnight and waking him at 5 am, Mason had his first post-surgery EEG. Sleep deprivation is necessary to make sure he falls asleep during the test. It can also trigger more seizures. The test involves wrapping Mason up tight in a sheet, then wrapping two large Velcro straps around him to keep him from getting away. The technician was (thankfully!) very quick in applying the 20+ leads (wires from the computer with little circles at the end stuck on with a special easy to remove glue) to his head. He cried most of the time, mostly from the restraint and not knowing what was going on. Otherwise it’s not painful or even very uncomfortable. Within 5 minutes of putting on the leads, he fell asleep. I didn’t notice any seizures. After 20 minutes he was woken followed by extremely bright flashing lights in his eyes . . . . poor little grumpy bear.

A few hours later we met with the doctor. She said that there was a lot of improvement on his EEG. On both sides of Mason’s brain. She also said that when they had suggested this surgery to us, they had hoped to stop only one type of seizure, the Tonic Drops. He was definitely exceeding their expectations. Because the seizures start on his left side, I had been hoping that there would be some improvement on the right side of his brain. So the improvement on both sides is really exciting! The doctor did say that she saw several seizures too small to be noticible aside from an EEG.

We have also started reducing one of his medications, Nitrazepam (same family as Valium). The last time he went off, he went into severe withdrawal, so you can really pray for this little boy over the next few weeks. None of the other meds have done this. His symptoms included being very cranky, screaming a lot for no reason, biting everything, including his toys, clothes, me and himself. I’m sure there were some others that I’ve forgotten, since it was nearly two years ago. I put him back on it at that time and have tried coming off more slowly a few times since then, but it’s been tough.

Update on Caden (I mentioned him last update). He is recovering at home getting over some side effects of the surgery – loss of speech for a few days and short-term paralysis on one side of his body. He is still having pain and unsteady walking. I’ll let you know more in the future. Thanks for your prayers for him! Please think of him as well when you pray for Mason. I just find that since we’ve gone through all this with Mason, my heart goes out to other families that have a child with such an uncontrollable seizure disorder. It’s so easy to take Asia and Sydney’s health and development for granted. Although I do that much less than I used to!

We have always kept within a couple of steps of Mason, but with his great increase in development and behavior, we are letting him wander and play farther from our reach. That seems to be resulting in more injuries. It’s actually a good thing, because it’s the normal development process. Active little boys get into stuff and get hurt. I’ve had a couple of boys from Mason’s grade one class over to play. Although I’ve been told how active they can be, I’m still not used to it when there is more than one extra boy here. Aside from minor bruises, Mason has had a couple of biggies. Last week he did something to his thumb and pulled his nail off ¾ of the way. We spent a couple of hours in emergency. It went quick, probably helped along by his nearly non-stop screaming, although the moment I told him we were going home, he stopped. The doctor had to remove the whole thing. I have no clue what he did – I don’t watch him as closely as I used to, there was no blood trail, and he can't tell me. ( I used to never take my eyes or ears off him) He spent a week with a huge bandage on his thumb holding it high, being extremely careful, but never cried after we left the hospital.

The other day we went to the playground near our house where Mason now enjoys playing on the equipment. Although we watch him, we can sit on the bench now without fear of him running away onto the road. Well, a couple pushing their cat in a cat-stroller distracted Daryl and me. Sydney wanted me to talk to them and ask about it and get a closer look. We were within 10 feet of Mason when he went head first off a 4 ½ foot high section, then smashed his chin against a metal part. He has a lot of bruising under his chin, bit a huge piece of the inside of his cheek and has a big blue bruise on the inside of his lip. There was a lot of blood, but thankfully mouth injuries stop bleeding pretty quickly. By the time we walked home (Mason in the stroller) he had stopped crying, and later that evening he ate an apple and some little hard candies!! Hasn’t cried since. Along with a high pain tolerance, he doesn’t seem to have the ongoing emotional response (self pity) to injuries like most of us. After all that, he had to be sleep deprived for the EEG the following day!

It’s tough seeing him go through these injuries, but there’s also a very positive side to it as he is becoming a little more like other boys! Hopefully he’s learning to be careful as well!

I am so very thankful that you all let me tell you about what is going on with Mason. (especially when I get long-winded like this) Although he still takes up much of our time, I am able to focus on Asia and Sydney a bit more these days. I am on a committee that is planning an eight-week session of a sibling support workshop here in Abbotsford. Personally I have no clue what to do, but am willing to learn! It’s with MCC supportive care services, the Fraser Valley Child Development Center, a couple of social workers, and parents. Our current focus is on fundraising to be able to start up in September ’06 and again in January ‘07. Professional counselors will be involved, which is where most of the costs are. This is something vitally important to families of children with Special Needs and/or Chronic conditions. The siblings are the ones most easily left out and will suffer for it (and grow from it) in the long term. Please pray that God will bless this endeavor greatly. That the finances will be poured in with ease, and the details will work out without a glitch. We have seen Him do mighty things already in the life of Mason and our family! He’s not finished yet!

Shirley

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.