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
Friday, April 21, 2006
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!
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