September 15, 2006
Well, dear friends and family, and prayer partners, I think it’s about time to send out another update on Mason! It is now September and we are nearing a year since he had brain surgery. It has been the most amazing, miraculous year in our lives! A year ago at this time, Mason was wearing a helmet with a face guard day and night for the volume of seizures he was having as well as the severity of each one. He had also plateaued at a 12 - 18 month level developmentally for exactly 5 years.
Last year around this time I wrote:
“Ephesians 3:20, 21 has been popping into my head a lot lately: NIV20 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! AmenAmplified 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).
I’m crying right now as I read these words. Holy words, a gift from God. Did I really expect more than we could hope for? Yes I did. Did I expect as much as we have received? No, there is no possible way that we could have even begun to comprehend what we have seen and experienced this past year. infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams I need no other words than these, because I really cannot begin to explain this past year in a letter like this.
This summer we have seen Mason learn new things on a daily basis. New words, new concepts, comprehension, behaviors, emotions. He is developing in all areas of his life! He’s gone from “burping the alphabet” at the beginning of summer to being able to sing along to the alphabet song and actually singing some of the letters randomly throughout the song!!! (click on www.dropshots.com/shirleyann to watch the former ABC song!)
Mason answers questions knowingly much more often and so clearly. There are more and more words that he is able to say, even putting together the occasional 2 or 3 word sentence. He has also learned to count to 3 in the last two weeks! He recognizes a couple of letters, but seems to like R, and will point at it and say it at random.
Mason wants to do everything himself lately. “Me” is a word he is saying more often all the time. For example, he insists on poking the straw into his juice box himself. It’s a messy struggle, but he does it! Then he tries to wipe the spilled juice off his arm, while simultaneously spilling more. But he did it himself!! Pray for patience for me! One morning he wanted to help me make pancakes. I decided to let him stir, fully expecting to clean up a big mess later. Well, he did such a good job, stirring so gently, that no clean up was necessary! (click on www.dropshots.com/shirleyann to watch him)
We spent a lot of time at the trailer we own with my parents. It really was a lifesaver. Hotels, holidays, other people’s homes are just too difficult with him. He has further developed many 2-year-old behaviors and skills. Checking everything out, going where he wants, climbing, etc. These are all things he has always done, but we could always distract him - the good thing about a very short attention span. Well, now that he has a much longer attention span, he can also maintain his desire to attend to what he wants to do! And, he’s a big boy, get the drift? Well he loved going to the trailer and make “were” (his word for ‘fire’), tear and crumple up paper for the fire. He did so well there, lots of swimming and playing in the new sandbox grandpa built. He also watched an entire 33 minute kids video for the first time in his life two weeks ago! He’s never watched more than 30 seconds of TV unless we held him down on our laps for part of a “family movie”!
There is so much more to tell, and I will in upcoming updates. But for right now we would like to invite you to give glory with us to Him who did immeasurably more than all we asked or imagined, according to His power that is at work within us.
We want invite you to glorify God in our home with us as we have an Open House of Thankfulness and Celebration on Friday, September 29 from 6 to 9 pm. (One year and two days after surgery) Join us for the whole time, or drop in to say “hello” (one of Mason’s favorite words while on a walk!). We’ll have some snackies.
This invitaion is open to those of you receiving this e-mail as well as those you share it with. I know that there are so many of you that share Mason’s story with others, which is fabulous. (this is a really good excuse to meet Mason in person then!)
Hoping to see you at the open house!!
Sunday, September 24, 2006
Sunday, June 18, 2006
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.
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
Wednesday, May 31, 2006
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
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.
Friday, April 21, 2006
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
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
Saturday, April 08, 2006
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.
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
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
Saturday, April 01, 2006
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!
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!
Wednesday, January 11, 2006
"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
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
Tuesday, January 10, 2006
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
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
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