I found a note I wrote on September 19, 2005 (10 days before surgery):
Tonic Clonic (grand mal) seizure at 7 am. I woke up to Mason's face buried in the blankets and teddy bears. I imagine his breathing was limited. When it was over, he fell asleep again.
Another TC at 8, then again, less severe, at 8:30. He slept until 10:30.
It's so hard to see this happen. The verse in my head lately is where the bible says that God will exceed my expectations. The Amplified version says something to the effect thatt He will do wha we even dare not ask.
While Mason slept, I thought this (didn't pray it, just thought it): Dare I ask for the full restoration of his ability to learn and develop?
"COME BOLDLY" were the words I heard in my head.
OK, so I did.
Then in the afternoon I drove past the church on McMillan. The words on the sign said, "I will sing to the Lord for He has head my cry."
Now, two years and one month later we are seeing exactly this happen. Back then it was an extremely scary thing to pray ... with confidence? I don't know how confident that prayer was because we had seen 5 years of no developmental growth at all. God continues to completely exceed our expectations, as we are seeing non-stop progress!! He has restored Mason's ability to learn!! Notice that the thought to ask for Mason's full restoration was not what I asked for (I don't know why!? I guess it wasn't what God wanted me to ask for!).
Tuesday, October 23, 2007
Saturday, October 20, 2007
Two Year Update (since surgery)
Well, it’s been a VERY long time since I did an update on Mason and our family. I just checked … five months actually! First let me reassure you that the reason for the gap is because Mason is doing so well. But many of you keep asking when the next update is coming, so I’ll do a quickie timeline of the last few months:
May & June ~ Potty training. Well at school anyway. He was very cooperative with everyone at school. They set him in the bathroom every 10 minutes and he was dry most days. My plan of action was to let him get into the pattern of it at school, then carry it over to home. Yeah… the best laid plans… He decided that he would not do it at home. Plain and simple. And forcing him and trying to bribe him just didn’t work. So I really have no idea how it’s going to come about. They are going to start working on it at school again soon. So that is a huge prayer request: get this boy trained! I think once he decides to want to do it, it will be a matter of days. It’s just getting to that point! (we do get our good-nites and wipes supplied – even delivered to our door) (they’re really good at school with it, and I doubt that his friends know, so don’t tell any little kids!) So between all three kids, I’ve done 13+ years of diapers.
~ Respite Funding. It came through! It is so neat seeing how God will exceed our expectations! The funding came through without a glitch. Well, one glitch … we had to wait an extra month for the first payment. We get direct funding, then choose our respite caregivers. It was in the area of caregivers that God really exceeded our expectations. My first thought was am I going to find enough people to use all this money for? Well, YES! I had people that were available for overnights, some for day hours only, and even some teenagers down at the trailer here and there! I never went without help this summer when I needed it!! And Mason of course loved going with all these different people. He now has several extended families! He is also exposed to many new experiences that he otherwise would not have. The reason we need so much more respite right now is because he is going through a phase where he does not want to cooperate with me very often. We are seeing a LOT of 2/3 year old behaviors. And as I’ve put it before, it’s hard peeling an 8 year old off the road! 2 year olds are easy to pick up!
July & August ~ LOTS of time down at the trailer. (Whatcom Meadows ~ whatcommeadows.com) I had many opportunities to be down there with just the girls, with friends along, the girls and Mason, or with Daryl and the girls. Daryl went to a Mariners game in Seattle with the girls, we all went to Deception Pass beach many times, lots of camp fires, girls went biking, sleepovers with our campground neighbors (their kids are the same age as ours and our families get along well), shopping, walks, swimming, building projects (I built a deck onto the sunroom attached to the trailer this summer all by myself!! The kids helped…). ~ Because of the respite, Daryl and I got away for 5 nights in a row this summer!! First time in nearly 14 years! By the fourth day I was driving Daryl nuts. He kept telling me to relax and read a book. Well I’d done that! I am so not used to relaxing that many days in a row! I’ll try again sometime. Now I know what to expect, and I can plan better for it!
~ Camp Squeah ~ as all summers, the girls spend 5 days at bible camp. This year Asia also went to ‘What A Girl Wants’ 5-day camp at church. (not overnight) It was an amazing week focused on purity. They had a lot of fun, discussion groups, a fashion show and much more. They addressed many, many teen issues, purity, peers, health, modesty, etc. All from biblical perspective. She wants to go again next year! They have a younger aged group that Sydney wants to go to next year.
~ Daryl got lots of golfing in this summer, and I had a lot of unstructured time. I didn’t realize how close to being burnt out I was. The timing for the respite was perfect.
September & October ~ Back to school! Asia is in grade 8 and Sydney is in grade 6. Both in the same middle school. We are happy with the teachers they both have. Both girls are doing well in school and are involved in a few activities. Asia is in grade 8 band (drums) and Jazz band (electric guitar) as well as continuing guitar lessons. Sydney is in grade 6 band (drums) and continues taking piano lessons. Both girls do well in music (a talent they do NOT get from me!). Asia is playing house league soccer and started school cheerleading. Sydney’s new love is basketball, so she has joined Friday Night Basketball (Athletes in Action). And yes, they find time for homework, family, friends and relaxing! After many years of having to baby-sit Mason so I could get a break, they haven’t had to do that anymore. Instead, I find that they are starting to want to play with him! And he of course, adores his sisters. The respite had done more for us as a family than I thought it would.
~ Youth groups for the girls. Asia goes to Vertical Edge (grade 7 & 8) and occasionally plays electric guitar in the VE band. Last time she was going to add to that and sing as well, but she hurt her arm, so couldn’t play guitar, and wasn’t comfortable up front without the guitar. Next time. Sydney has started Jump 6, youth for grade sixes, something she’s waited for since Asia was in grade 6.
~ Mason is in grade 3 as well as the Special Ed class. The combination works so well for him and he loves school.
~ I am back at being involved in the women’s ministry at church. I am leading Oasis, the Wednesday morning group and really enjoying it a lot. It’s a lot of work, but the whole team of women is great! I am learning so much, being guided by our women’s pastor, and from so many others! Our theme this year is Pay it Forward – God’s Love, and we make a plan of action each week to reach out. We are definitely pushing past our comfort zones a bit!
Mason Progress Report ~ Seizures ~ In general, they’ve gradually been going up since last winter. Still very slight compared to what they were before surgery. We adjusted meds a bit, which seemed to help, although that brought on some Tourette Syndrome-like vocal tics, which sounded like grunts last spring. That wore off, but we still see some physical tics on occasion. One of his medications has that as a rare side effect. Mason will be having an EEG and Dr. appointment sometime around January, so we’ll ask more questions then if all continues as it is. Mason started sleeping through the night a year ago, but started waking at night with seizures again in the last few months. (I don’t keep close records like I used too, so I lose track of time/days/months) This summer Mason got grass allergies and hay fever. He’s never had that before, but they did a number on his seizures. He had a few more per day, and they were more intense. Because of his medications, we are not able to give him cough meds or allergy meds. But I finally called the pharmacist and begged for something. He was sneezing so hard, and his face was red and swollen. So she gave me something for him. It calmed the allergies as well as the seizures. He started sleeping through the night again! So that’s another area to explore. I think we may be looking into allergy testing and seeing if there is a link there. I’m continuing to give him the allergy meds even though that season is over. When I stop, I see an increase in seizures again and waking at night. So he may have something else going on.
~ Development ~ WOW! Amazing, Incredible!! It’s been just over two years since his surgery, and I think he has gained two years of development in that time!! We see changes every week, nearly every day. So I’ll try to list off some examples.
~ huge increase in vocabulary. ~ Mason is trying hard to say full words. Example: house (instead of hou__), cat (instead of ca_) etc. ~ He is very willing to repeat/practice words nearly all the time.
~ We have begun copying sentences in speech therapy. Example: when he and I were driving home the other day and he said: “dad … hockey”. So I had him repeat after me one word at a time: “dad … is … watching … hockey”. We must have done that at least 20 times! And there was noticeable improvement in his words and the speed in putting them together in that short time. Today, after lots of coaching, he said “I … want … cheese”. All by himself!! Lots of cheering! His speech therapist is loving working with him, kids with special needs that learn this fast are less than rare!
~ He understands what we’re saying even when we “talk around” the subject! ~ He can verbally spell his name sometimes. He’ll pretend to ‘write’ and say the letters of his name. (I remember when the girls were around 2 or 3 and they thought they were actually printing words!!)
~ He really knows what he wants and can often, brokenly, communicate that to us. When he can’t communicate, or wants his own way, or wants something he can’t have, we see his very strong will! Thankfully time-out still works. ~ He wants to do everything we do! Pour milk, cereal, set the table, make toast. One morning he was determined to make his own toast. He put the bread in the toaster, pushed it down. Got a plate while he waited. Toast popped, he took it out and put it on the plate. I got the jam ready, but he scooped it and spread it on the toast. Putting the jam on took him about 5 minutes – he enjoyed doing this himself so much. He poured his own milk, with a bit of help from mommy. He then took his breakfast around the other side of the counter and ate it. Very proud of himself! We are seeing a lot of these kinds of things.
~ He acts out a lot with me, Mommy. Behaviors that I see all the time, he seldom does with other people. I get great reports from everyone who takes him for respite, and even school – although he’s acting out a smidge more at school than he used to. The word ‘no’ is being heard more there, now.
~ He had a Dr. appointment at Childrens Hospital in July. It was more of a ‘show and tell’ session than a doctor visit! From their reactions, I am certain that Mason is not typical of the results they see. I can only attribute this to the work God is doing. Your prayers, past, present, and future, are all a part of His work!
~ He goes to Church with us. That started a year and a half ago, and for the first while I spent the whole time with him in the preschool area with the toys. It felt so wonderful to attend church as a whole family! Even if I missed most of it. We had a young woman volunteer to assist him for a year which was wonderful! Mason loved it and really did well in following the routines in Kidstown and church. We’ve had some others start to help out there as well. And Mason loves going to church! Well, that seems like it was a bit longer than the ‘quickie timeline’, but it really only scratches the surface of the ongoing changes we see.
May & June ~ Potty training. Well at school anyway. He was very cooperative with everyone at school. They set him in the bathroom every 10 minutes and he was dry most days. My plan of action was to let him get into the pattern of it at school, then carry it over to home. Yeah… the best laid plans… He decided that he would not do it at home. Plain and simple. And forcing him and trying to bribe him just didn’t work. So I really have no idea how it’s going to come about. They are going to start working on it at school again soon. So that is a huge prayer request: get this boy trained! I think once he decides to want to do it, it will be a matter of days. It’s just getting to that point! (we do get our good-nites and wipes supplied – even delivered to our door) (they’re really good at school with it, and I doubt that his friends know, so don’t tell any little kids!) So between all three kids, I’ve done 13+ years of diapers.
~ Respite Funding. It came through! It is so neat seeing how God will exceed our expectations! The funding came through without a glitch. Well, one glitch … we had to wait an extra month for the first payment. We get direct funding, then choose our respite caregivers. It was in the area of caregivers that God really exceeded our expectations. My first thought was am I going to find enough people to use all this money for? Well, YES! I had people that were available for overnights, some for day hours only, and even some teenagers down at the trailer here and there! I never went without help this summer when I needed it!! And Mason of course loved going with all these different people. He now has several extended families! He is also exposed to many new experiences that he otherwise would not have. The reason we need so much more respite right now is because he is going through a phase where he does not want to cooperate with me very often. We are seeing a LOT of 2/3 year old behaviors. And as I’ve put it before, it’s hard peeling an 8 year old off the road! 2 year olds are easy to pick up!
July & August ~ LOTS of time down at the trailer. (Whatcom Meadows ~ whatcommeadows.com) I had many opportunities to be down there with just the girls, with friends along, the girls and Mason, or with Daryl and the girls. Daryl went to a Mariners game in Seattle with the girls, we all went to Deception Pass beach many times, lots of camp fires, girls went biking, sleepovers with our campground neighbors (their kids are the same age as ours and our families get along well), shopping, walks, swimming, building projects (I built a deck onto the sunroom attached to the trailer this summer all by myself!! The kids helped…). ~ Because of the respite, Daryl and I got away for 5 nights in a row this summer!! First time in nearly 14 years! By the fourth day I was driving Daryl nuts. He kept telling me to relax and read a book. Well I’d done that! I am so not used to relaxing that many days in a row! I’ll try again sometime. Now I know what to expect, and I can plan better for it!
~ Camp Squeah ~ as all summers, the girls spend 5 days at bible camp. This year Asia also went to ‘What A Girl Wants’ 5-day camp at church. (not overnight) It was an amazing week focused on purity. They had a lot of fun, discussion groups, a fashion show and much more. They addressed many, many teen issues, purity, peers, health, modesty, etc. All from biblical perspective. She wants to go again next year! They have a younger aged group that Sydney wants to go to next year.
~ Daryl got lots of golfing in this summer, and I had a lot of unstructured time. I didn’t realize how close to being burnt out I was. The timing for the respite was perfect.
September & October ~ Back to school! Asia is in grade 8 and Sydney is in grade 6. Both in the same middle school. We are happy with the teachers they both have. Both girls are doing well in school and are involved in a few activities. Asia is in grade 8 band (drums) and Jazz band (electric guitar) as well as continuing guitar lessons. Sydney is in grade 6 band (drums) and continues taking piano lessons. Both girls do well in music (a talent they do NOT get from me!). Asia is playing house league soccer and started school cheerleading. Sydney’s new love is basketball, so she has joined Friday Night Basketball (Athletes in Action). And yes, they find time for homework, family, friends and relaxing! After many years of having to baby-sit Mason so I could get a break, they haven’t had to do that anymore. Instead, I find that they are starting to want to play with him! And he of course, adores his sisters. The respite had done more for us as a family than I thought it would.
~ Youth groups for the girls. Asia goes to Vertical Edge (grade 7 & 8) and occasionally plays electric guitar in the VE band. Last time she was going to add to that and sing as well, but she hurt her arm, so couldn’t play guitar, and wasn’t comfortable up front without the guitar. Next time. Sydney has started Jump 6, youth for grade sixes, something she’s waited for since Asia was in grade 6.
~ Mason is in grade 3 as well as the Special Ed class. The combination works so well for him and he loves school.
~ I am back at being involved in the women’s ministry at church. I am leading Oasis, the Wednesday morning group and really enjoying it a lot. It’s a lot of work, but the whole team of women is great! I am learning so much, being guided by our women’s pastor, and from so many others! Our theme this year is Pay it Forward – God’s Love, and we make a plan of action each week to reach out. We are definitely pushing past our comfort zones a bit!
Mason Progress Report ~ Seizures ~ In general, they’ve gradually been going up since last winter. Still very slight compared to what they were before surgery. We adjusted meds a bit, which seemed to help, although that brought on some Tourette Syndrome-like vocal tics, which sounded like grunts last spring. That wore off, but we still see some physical tics on occasion. One of his medications has that as a rare side effect. Mason will be having an EEG and Dr. appointment sometime around January, so we’ll ask more questions then if all continues as it is. Mason started sleeping through the night a year ago, but started waking at night with seizures again in the last few months. (I don’t keep close records like I used too, so I lose track of time/days/months) This summer Mason got grass allergies and hay fever. He’s never had that before, but they did a number on his seizures. He had a few more per day, and they were more intense. Because of his medications, we are not able to give him cough meds or allergy meds. But I finally called the pharmacist and begged for something. He was sneezing so hard, and his face was red and swollen. So she gave me something for him. It calmed the allergies as well as the seizures. He started sleeping through the night again! So that’s another area to explore. I think we may be looking into allergy testing and seeing if there is a link there. I’m continuing to give him the allergy meds even though that season is over. When I stop, I see an increase in seizures again and waking at night. So he may have something else going on.
~ Development ~ WOW! Amazing, Incredible!! It’s been just over two years since his surgery, and I think he has gained two years of development in that time!! We see changes every week, nearly every day. So I’ll try to list off some examples.
~ huge increase in vocabulary. ~ Mason is trying hard to say full words. Example: house (instead of hou__), cat (instead of ca_) etc. ~ He is very willing to repeat/practice words nearly all the time.
~ We have begun copying sentences in speech therapy. Example: when he and I were driving home the other day and he said: “dad … hockey”. So I had him repeat after me one word at a time: “dad … is … watching … hockey”. We must have done that at least 20 times! And there was noticeable improvement in his words and the speed in putting them together in that short time. Today, after lots of coaching, he said “I … want … cheese”. All by himself!! Lots of cheering! His speech therapist is loving working with him, kids with special needs that learn this fast are less than rare!
~ He understands what we’re saying even when we “talk around” the subject! ~ He can verbally spell his name sometimes. He’ll pretend to ‘write’ and say the letters of his name. (I remember when the girls were around 2 or 3 and they thought they were actually printing words!!)
~ He really knows what he wants and can often, brokenly, communicate that to us. When he can’t communicate, or wants his own way, or wants something he can’t have, we see his very strong will! Thankfully time-out still works. ~ He wants to do everything we do! Pour milk, cereal, set the table, make toast. One morning he was determined to make his own toast. He put the bread in the toaster, pushed it down. Got a plate while he waited. Toast popped, he took it out and put it on the plate. I got the jam ready, but he scooped it and spread it on the toast. Putting the jam on took him about 5 minutes – he enjoyed doing this himself so much. He poured his own milk, with a bit of help from mommy. He then took his breakfast around the other side of the counter and ate it. Very proud of himself! We are seeing a lot of these kinds of things.
~ He acts out a lot with me, Mommy. Behaviors that I see all the time, he seldom does with other people. I get great reports from everyone who takes him for respite, and even school – although he’s acting out a smidge more at school than he used to. The word ‘no’ is being heard more there, now.
~ He had a Dr. appointment at Childrens Hospital in July. It was more of a ‘show and tell’ session than a doctor visit! From their reactions, I am certain that Mason is not typical of the results they see. I can only attribute this to the work God is doing. Your prayers, past, present, and future, are all a part of His work!
~ He goes to Church with us. That started a year and a half ago, and for the first while I spent the whole time with him in the preschool area with the toys. It felt so wonderful to attend church as a whole family! Even if I missed most of it. We had a young woman volunteer to assist him for a year which was wonderful! Mason loved it and really did well in following the routines in Kidstown and church. We’ve had some others start to help out there as well. And Mason loves going to church! Well, that seems like it was a bit longer than the ‘quickie timeline’, but it really only scratches the surface of the ongoing changes we see.
Left to right:
Asia, Shirley, Mason, Daryl, Sydney
Monday, May 14, 2007
Daily Miracles
Hello all!
The adventures carry on here. Mason continues to amaze us all the time.
This Mother’s Day weekend, Pastor Bev prayed for the moms in a beautiful long list of detail, including the moms of kids with special needs. She prayed about the ‘daily miracles’. A few of things impacted me as she prayed this. 1. Others have a window into what God is doing in my life as a mom to Mason. 2. Yes, there ARE daily miracles, even when they seem non-existent. 3. How often I overlook the daily miracles in the lives of our daughters in their own struggles, even if they aren’t as drastic as Mason’s.
So here are some of those daily miracles!
· In the last few weeks Mason has started ‘telling’ us about his day! For example: Auntie Kim played with him in the back yard last week. A couple of hours after she left, Mason looks at me and says, “Kim…….. pay……..box.” He was telling me that Kim had played with him in the sand box! WOW!!!
· He also gets it into his head that he wants to go to the trailer. He is starting to think abstract. Normally he says words that have to do with what he can see or touch – right now. Lately he just says “…ler” (trailer) out of the blue, which means he’s thinking about it without us saying anything. Saturday he wouldn’t get out of the car because he had decided he was going to the “….ler”.
· He is modifying his behavior a little more often when given the choice to obey Mommy, or go to his room for time-out. Putting him on the couch for time-out just doesn’t seem to be working any more. He does not like getting locked in his room for that minute or two!
· Words. He keeps getting more of them and is saying them better. After years of “yeah” or “yup”, in the last two days he has started saying “yes”. Sounding a bit like “yesh”. He wants to speak so much. He tries so hard and repeats us a lot. Most of the time if we tell him to say something he will, eagerly. Then when I want to show him off, he just clams up.
· He fights with the girls more. Yeah, fun….. I keep trying to tell the girls that this is what typical brothers do. They still get mad at him!! I changed vehicles in December. 5 year old Acura MDX - 7 SEATS!!!! Not as big as a van, I liked my Honda Accord because I could zip around. The Acura is actually shorter than my car was! So I can still make easy u-turns for all the times I pass the street I’m supposed to turn at! Now the girls sit in the third row most of the time. They arrive home without injuries, and Mommy is just that much more relaxed and in control of her emotions.
· School. Mason still loves it. I pop into his special ed class often, and he gives me a big hug, or just says “mom” half a dozen times. But he doesn’t cry, he knows he’ll see mommy soon again! The elementary school is doing a musical this week and all the kids are involved. Apparently Mason is actually doing quite well at the choreographed dance steps his grade 2 class is doing!!
· Chalk drawing on the sidewalk. He often takes that chalk and makes little strokes as he says, “M….A….O….N”. He practices ‘writing’ his name a lot at school. He tries to draw a ‘face’.
· Mason loves watching all kinds of TV shows and movies. He is repeating so much of what he hears on the TV, songs, actions. Same with games he plays on the computer. www.starfall.com is an amazing website for learning to read. Well the alphabet and numbers for Mason for now, but it has up to Grade 1 or 2 level stuff!!
· A miracle-to-be: potty training. So far not even a glimpse of it, but one day…………. Thankfully the ‘goodnights’ and other supplies are funded and get delivered.
· We’ve just had an increase in respite funding, and our social worker is looking for more funding for us. Recently we went for a little walk up the street. 6 houses or so. Then Mason decided he didn’t want to go back home with me. Once again the ‘crisis management hold’ was put into effect. But he still pulled up his feet, and I could carry him a few steps, then had to rest. Thankfully my neighbor offered to help and grabbed his legs and we carried him home that way…. Screaming …. Mason that is, although I was inside! But exhausting. Hopefully he becomes easier to manage as his weight and height increase.
· Mason LOVES going to church. He jumps, claps, and squeals during the up-beat music. Sometimes he even shouts “more!”. Enthusiasm without reserve! One time during a slower song of worship, I watched him as he slowly lifted his right hand. He was watching it go up. It looked as though his hand was being pulled up and Mason was just watching it. Was God drawing Mason to himself in that moment? Mason doesn’t have the intellect most of us have, but I believe that God does meet him and communicate with Mason in His own unique way. Child-like faith.
Well that should be all for tonight. There are, of course, many more stories, but you’ve had lots to read for today! Thanks, by the way. Your continued support is so appreciated!!
Shirley
New prayer request:
· Crystal – my second cousin, and family friend growing up – my age, single mom of four – just found out a few days ago that she has 6 tumors. 4 in her brain, 2 on her spinal cord, plus one cyst on her spinal cord. Surgery is coming up for the largest one golf ball size at the back of her brain. Here are her personal prayer requests:
· Prayer requests For now:
· The Doctors - well rested and confident
· the surgery - no cancellations or delays
· No complications - bleeding , infections, freak laryngoscope accidents
· Peace and assurance for me and My family
· That, above all, God will be glorified!
Previous prayer updates:
· 10 year old Cailyn continuing cancer treatments.
· Auntie Darlene. I had the awesome opportunity to fly to Winnipeg for a few days last weekend to see her. (thanks Daryl!!!) I got to spend time with her and Uncle Frank and their daughters. She is nearing the end. She wants to go home now. She is so ready to meet Jesus. Pray that it will come quickly and without any further pain. Thank-you Auntie Darlene for your endless encouragements to me.
…but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31
The adventures carry on here. Mason continues to amaze us all the time.
This Mother’s Day weekend, Pastor Bev prayed for the moms in a beautiful long list of detail, including the moms of kids with special needs. She prayed about the ‘daily miracles’. A few of things impacted me as she prayed this. 1. Others have a window into what God is doing in my life as a mom to Mason. 2. Yes, there ARE daily miracles, even when they seem non-existent. 3. How often I overlook the daily miracles in the lives of our daughters in their own struggles, even if they aren’t as drastic as Mason’s.
So here are some of those daily miracles!
· In the last few weeks Mason has started ‘telling’ us about his day! For example: Auntie Kim played with him in the back yard last week. A couple of hours after she left, Mason looks at me and says, “Kim…….. pay……..box.” He was telling me that Kim had played with him in the sand box! WOW!!!
· He also gets it into his head that he wants to go to the trailer. He is starting to think abstract. Normally he says words that have to do with what he can see or touch – right now. Lately he just says “…ler” (trailer) out of the blue, which means he’s thinking about it without us saying anything. Saturday he wouldn’t get out of the car because he had decided he was going to the “….ler”.
· He is modifying his behavior a little more often when given the choice to obey Mommy, or go to his room for time-out. Putting him on the couch for time-out just doesn’t seem to be working any more. He does not like getting locked in his room for that minute or two!
· Words. He keeps getting more of them and is saying them better. After years of “yeah” or “yup”, in the last two days he has started saying “yes”. Sounding a bit like “yesh”. He wants to speak so much. He tries so hard and repeats us a lot. Most of the time if we tell him to say something he will, eagerly. Then when I want to show him off, he just clams up.
· He fights with the girls more. Yeah, fun….. I keep trying to tell the girls that this is what typical brothers do. They still get mad at him!! I changed vehicles in December. 5 year old Acura MDX - 7 SEATS!!!! Not as big as a van, I liked my Honda Accord because I could zip around. The Acura is actually shorter than my car was! So I can still make easy u-turns for all the times I pass the street I’m supposed to turn at! Now the girls sit in the third row most of the time. They arrive home without injuries, and Mommy is just that much more relaxed and in control of her emotions.
· School. Mason still loves it. I pop into his special ed class often, and he gives me a big hug, or just says “mom” half a dozen times. But he doesn’t cry, he knows he’ll see mommy soon again! The elementary school is doing a musical this week and all the kids are involved. Apparently Mason is actually doing quite well at the choreographed dance steps his grade 2 class is doing!!
· Chalk drawing on the sidewalk. He often takes that chalk and makes little strokes as he says, “M….A….O….N”. He practices ‘writing’ his name a lot at school. He tries to draw a ‘face’.
· Mason loves watching all kinds of TV shows and movies. He is repeating so much of what he hears on the TV, songs, actions. Same with games he plays on the computer. www.starfall.com is an amazing website for learning to read. Well the alphabet and numbers for Mason for now, but it has up to Grade 1 or 2 level stuff!!
· A miracle-to-be: potty training. So far not even a glimpse of it, but one day…………. Thankfully the ‘goodnights’ and other supplies are funded and get delivered.
· We’ve just had an increase in respite funding, and our social worker is looking for more funding for us. Recently we went for a little walk up the street. 6 houses or so. Then Mason decided he didn’t want to go back home with me. Once again the ‘crisis management hold’ was put into effect. But he still pulled up his feet, and I could carry him a few steps, then had to rest. Thankfully my neighbor offered to help and grabbed his legs and we carried him home that way…. Screaming …. Mason that is, although I was inside! But exhausting. Hopefully he becomes easier to manage as his weight and height increase.
· Mason LOVES going to church. He jumps, claps, and squeals during the up-beat music. Sometimes he even shouts “more!”. Enthusiasm without reserve! One time during a slower song of worship, I watched him as he slowly lifted his right hand. He was watching it go up. It looked as though his hand was being pulled up and Mason was just watching it. Was God drawing Mason to himself in that moment? Mason doesn’t have the intellect most of us have, but I believe that God does meet him and communicate with Mason in His own unique way. Child-like faith.
Well that should be all for tonight. There are, of course, many more stories, but you’ve had lots to read for today! Thanks, by the way. Your continued support is so appreciated!!
Shirley
New prayer request:
· Crystal – my second cousin, and family friend growing up – my age, single mom of four – just found out a few days ago that she has 6 tumors. 4 in her brain, 2 on her spinal cord, plus one cyst on her spinal cord. Surgery is coming up for the largest one golf ball size at the back of her brain. Here are her personal prayer requests:
· Prayer requests For now:
· The Doctors - well rested and confident
· the surgery - no cancellations or delays
· No complications - bleeding , infections, freak laryngoscope accidents
· Peace and assurance for me and My family
· That, above all, God will be glorified!
Previous prayer updates:
· 10 year old Cailyn continuing cancer treatments.
· Auntie Darlene. I had the awesome opportunity to fly to Winnipeg for a few days last weekend to see her. (thanks Daryl!!!) I got to spend time with her and Uncle Frank and their daughters. She is nearing the end. She wants to go home now. She is so ready to meet Jesus. Pray that it will come quickly and without any further pain. Thank-you Auntie Darlene for your endless encouragements to me.
…but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31
Friday, March 23, 2007
Spring Break
Hello all!!!!
Well, we’re nearing the end of two weeks of Spring Break. School starts in less than 4 days. Mason needs it badly. We started off with the time change at the start of the break, and he has still not adjusted. I think back to school will help. He’s been quite uncooperative for the most part, much like the Christmas break. I think he’s really out of sync when he’s not in school. He’s had sleepovers and day visits at Grandpa and Grandma Martens, Auntie Kim & Uncle Tony, and some respite, so he’s had LOTS of fun, but he’s ready to get back into routine. So am I.
The girls just returned from nearly two weeks away. They were in Manitoba with Grandpa and Grandma Wiebe, Auntie Connie & Uncle Zac, Auntie Lisa & Uncle Kevin, and all their cousins. I asked them what their favorite part was and they rattled off ALL the names of the people they spent time with. They really got “familied up”!! G & G drove out and picked them up, then the girls flew home all by themselves for the first time ever. This will be a trip they will never forget!
This whole learning thing with Mason is just not ending!! He can put on his own shoes (mostly on the wrong foot!) and his own jacket. He puts it down on the floor, puts his hands into the sleeved up-side-down then flips it over his head and “tada” it’s on! Last week he went to play outside (one of few days that it didn’t rain on the break) and got out his little plastic T-ball set. He put that ball on the T, showed me where he threw the bat over the fence. (I had to go get it –hoping that Julius – the Doberman dog – wasn’t outside). Mason grabbed that bat and swung at the ball and hit it and it went flying 25 feet!! Now I’ll take you back to last summer – the last time he played with it. We kept showing him how to hit it properly, and he would practice swing with us many times. Then when he’d go to hit it, it was a vertical thump on top of the ball!!! Every single time!! So this was a HUGE surprise to me to see him hit it with great accuracy and hard – and properly!! Then he did it over and over! I was running to keep from being hit, that would have hurt!
His “printing” has improved a lot too. He used to scribble big wild scribbles all over the page. Now he takes his pencil and does short strokes like he’s trying to write! All the while he’s naming off various letters of the alphabet at random.
Mason is repeating words we say with great enthusiasm. He is also willing to be taught to repeat after us. It used to be so random, now it’s daily. We have also noticed that he is starting to become aware of his “inside voice”. He’s never had that before. In fact since surgery it’s gotten louder. And he has a “bold” voice to begin with. His little boy cousin in Winnipeg apparently has the same one!!
Here are some ideas to help you pray for us:
Ø Patience for Mommy and Daddy, as Mason tends to behave the worst with us. He gets very strong willed and says “ME” a lot, wanting to have his own way. Very much in that two year old stage, but 65 pounds. I took him to the pet store to get cat food yesterday. Usually he likes it, but this time I ended up having to peel him off the floor, while he’s screaming, grab him in the “crisis management hold”, and drag him out to the car while EVERYBODY is watching. Not that that bothers me too much. Thankfully autism is getting so well known, most people assume that is what he has once they clue in that this boy isn’t as typical as he looks! But I sure am grateful that we can use the handicap parking near the doors! This is all part of the developmental process, and he has to go through it – so we’re thankful for that, but his size and volume add a … let’s say … ‘challenge’?!?!
Ø Mason’s seizures have been increasing a bit over the last month. Normally they seem to happen mostly at night or upon waking. Lately we’ve been seeing more at supper time. They are all still VERY mild compared to before surgery, but we need to keep them at bay. We haven’t increased med in about 2 years, and he’s grown and gained weight in that time, so the concentration is getting lower in his body. So I hope it’s just a matter of having the meds catch up to his weight. We started a small increase this week, and may go up a bit more next week. The neurologist, via the nurse, said he is not on high doses now, so we have plenty of room to increase meds if needed.
PRAYER UPDATE
Daryl’s Aunt ~ I mentioned her in my last e-mail. She has had an immune disorder for many years, which had been in remission for quite some time, although it left her unable to hear. Well that returned a while back, her Cochlear hearing implant stopped functioning, then she got Bells Palsy (partial paralysis on one side of her face??), shingles in one eye (is now blind in that eye), then got an infection in the other eye (nearly unable to see). Last week the doctors informed them that she now has Leukemia. And there is no treatment for the type she has. She will be turning 60 this weekend. As I mentioned last time, she has been an amazing encourager to me over these years of what we’ve gone through with Mason. PLEASE, please take a moment to pray for her and her family. Husband, two daughters and their families. (grandchild #5 on the way)
My former neighbor’s daughter ~ from where I grew up ~ I mentioned her as well in my last e-mail ~ Little 10 year old Cailyn was diagnosed with cancer a few weeks ago. They have now determined that it’s stage 3 (out of 4). The doctors feel it’s still treatable, but very aggressive treatment and will go on for many months. They had to insert some kind of “line” to give her the chemo. Normally it’s not a difficult procedure, but they had trouble with her and it took 3 ½ hours. And Cailyn screamed that whole time. Because she had post-surgery trouble the week before, they couldn’t sedate her. She seems to have fallen into deep depression as well. Her Grandpa died of cancer last year. So she is a very scared little girl. This really hits me as Sydney is 10, and I can’t imagine her going through something like this.
So thank you for taking a minute or two to pray. I know there are so many people with big trials in their lives and much to deal with. I would also be honored to hear your prayer requests as you “send for help.” Psalm 121:1-3 says: “I look up to the mountains—does my help come from there? My help comes from the Lord, who made heaven and earth! He will not let you stumble; the one who watches over you will not slumber.” (NLT)
Shirley
Well, we’re nearing the end of two weeks of Spring Break. School starts in less than 4 days. Mason needs it badly. We started off with the time change at the start of the break, and he has still not adjusted. I think back to school will help. He’s been quite uncooperative for the most part, much like the Christmas break. I think he’s really out of sync when he’s not in school. He’s had sleepovers and day visits at Grandpa and Grandma Martens, Auntie Kim & Uncle Tony, and some respite, so he’s had LOTS of fun, but he’s ready to get back into routine. So am I.
The girls just returned from nearly two weeks away. They were in Manitoba with Grandpa and Grandma Wiebe, Auntie Connie & Uncle Zac, Auntie Lisa & Uncle Kevin, and all their cousins. I asked them what their favorite part was and they rattled off ALL the names of the people they spent time with. They really got “familied up”!! G & G drove out and picked them up, then the girls flew home all by themselves for the first time ever. This will be a trip they will never forget!
This whole learning thing with Mason is just not ending!! He can put on his own shoes (mostly on the wrong foot!) and his own jacket. He puts it down on the floor, puts his hands into the sleeved up-side-down then flips it over his head and “tada” it’s on! Last week he went to play outside (one of few days that it didn’t rain on the break) and got out his little plastic T-ball set. He put that ball on the T, showed me where he threw the bat over the fence. (I had to go get it –hoping that Julius – the Doberman dog – wasn’t outside). Mason grabbed that bat and swung at the ball and hit it and it went flying 25 feet!! Now I’ll take you back to last summer – the last time he played with it. We kept showing him how to hit it properly, and he would practice swing with us many times. Then when he’d go to hit it, it was a vertical thump on top of the ball!!! Every single time!! So this was a HUGE surprise to me to see him hit it with great accuracy and hard – and properly!! Then he did it over and over! I was running to keep from being hit, that would have hurt!
His “printing” has improved a lot too. He used to scribble big wild scribbles all over the page. Now he takes his pencil and does short strokes like he’s trying to write! All the while he’s naming off various letters of the alphabet at random.
Mason is repeating words we say with great enthusiasm. He is also willing to be taught to repeat after us. It used to be so random, now it’s daily. We have also noticed that he is starting to become aware of his “inside voice”. He’s never had that before. In fact since surgery it’s gotten louder. And he has a “bold” voice to begin with. His little boy cousin in Winnipeg apparently has the same one!!
Here are some ideas to help you pray for us:
Ø Patience for Mommy and Daddy, as Mason tends to behave the worst with us. He gets very strong willed and says “ME” a lot, wanting to have his own way. Very much in that two year old stage, but 65 pounds. I took him to the pet store to get cat food yesterday. Usually he likes it, but this time I ended up having to peel him off the floor, while he’s screaming, grab him in the “crisis management hold”, and drag him out to the car while EVERYBODY is watching. Not that that bothers me too much. Thankfully autism is getting so well known, most people assume that is what he has once they clue in that this boy isn’t as typical as he looks! But I sure am grateful that we can use the handicap parking near the doors! This is all part of the developmental process, and he has to go through it – so we’re thankful for that, but his size and volume add a … let’s say … ‘challenge’?!?!
Ø Mason’s seizures have been increasing a bit over the last month. Normally they seem to happen mostly at night or upon waking. Lately we’ve been seeing more at supper time. They are all still VERY mild compared to before surgery, but we need to keep them at bay. We haven’t increased med in about 2 years, and he’s grown and gained weight in that time, so the concentration is getting lower in his body. So I hope it’s just a matter of having the meds catch up to his weight. We started a small increase this week, and may go up a bit more next week. The neurologist, via the nurse, said he is not on high doses now, so we have plenty of room to increase meds if needed.
PRAYER UPDATE
Daryl’s Aunt ~ I mentioned her in my last e-mail. She has had an immune disorder for many years, which had been in remission for quite some time, although it left her unable to hear. Well that returned a while back, her Cochlear hearing implant stopped functioning, then she got Bells Palsy (partial paralysis on one side of her face??), shingles in one eye (is now blind in that eye), then got an infection in the other eye (nearly unable to see). Last week the doctors informed them that she now has Leukemia. And there is no treatment for the type she has. She will be turning 60 this weekend. As I mentioned last time, she has been an amazing encourager to me over these years of what we’ve gone through with Mason. PLEASE, please take a moment to pray for her and her family. Husband, two daughters and their families. (grandchild #5 on the way)
My former neighbor’s daughter ~ from where I grew up ~ I mentioned her as well in my last e-mail ~ Little 10 year old Cailyn was diagnosed with cancer a few weeks ago. They have now determined that it’s stage 3 (out of 4). The doctors feel it’s still treatable, but very aggressive treatment and will go on for many months. They had to insert some kind of “line” to give her the chemo. Normally it’s not a difficult procedure, but they had trouble with her and it took 3 ½ hours. And Cailyn screamed that whole time. Because she had post-surgery trouble the week before, they couldn’t sedate her. She seems to have fallen into deep depression as well. Her Grandpa died of cancer last year. So she is a very scared little girl. This really hits me as Sydney is 10, and I can’t imagine her going through something like this.
So thank you for taking a minute or two to pray. I know there are so many people with big trials in their lives and much to deal with. I would also be honored to hear your prayer requests as you “send for help.” Psalm 121:1-3 says: “I look up to the mountains—does my help come from there? My help comes from the Lord, who made heaven and earth! He will not let you stumble; the one who watches over you will not slumber.” (NLT)
Shirley
Sunday, March 04, 2007
Hello Everyone!
Well it's been nearly six months since I filled you in out the latest with Mason. He just continues to amaze us all the time. Comprehension levels keep going up and he's been putting two word phrases more frequently. So much of it is baby steps, but we notice every detail of progress. We just take for granted that the girls continue to progress that we don't notice the details as closely.
Christmas was a blast! NOT! The neat thing was that Mason understood what the gifts were about! In the past we would let him play with his gift beforehand so that he could get excited when he recognized it when he opened it. All the excitement though, increased his seizures a bit, and made him VERY incorrigible!!! Cranky, uncooperative - stressful. All of it was progress, but difficult. That first Monday back to school was Christmas Vacation to me!!! Since then he's been doing a lot better in the behavior department.
I wanted to tell you a bunch of 'Mason stories' today, but I'm kinda thick with a head cold. Got it from Mason! He's a kid that next-to-never gets sick. But last week he did catch a cold and on Tuesday afternoon the fever came on. Then it triggered a status (seizure that doesn't stop) seizure . The seizure ended up lasting 3 hours that night. In him it was mostly staring off with watery eyes and a bit of eye rolling. Status increases body temp, so they feed off each other and that's when we need extra intervention. (The last time he had a fever, nearly 2 years ago, we needed IV fluids to get the temp down when the Tylenol didn't help at all.) It was a hard decision to make, because Mason didn't look like he was having a seizure. I knew the signs, so I had to explain over and over to the ambulance guys, nurses and doctor. I felt so sad for him because he was scared of the ambulance, then of the hospital. Because of his greatly increased level of awareness since surgery, he now gets scared, knows he's scared, and was saying "cared" all the way in. :-( Yet it was really neat to see him able to express his emotions! Bittersweet.
This time Advil worked at the hospital - they give a higher dose than we normally do at home. 15-20 minutes later I saw the "seizure look" on his face just go away. I touched his forehead and it was cool. No IV was needed!!!! That's a whole event that takes 4 people to get done. I called the ambulance around 7:30 and I called Daryl to pick us up at 8:40. Fast!!! There were a couple of people who knew and prayed. :-) I kept sane!!! And Mason was pretty good after a while at the hospital.
What I didn't expect was tears near the surface (me). It was a big flashback to what life used to be like on a daily basis. Not the hospital part, but the ongoing crisis or near-crisis. Always being on edge, watching. Emotions having to be set aside regularly to be able to function to help my baby. How amazing the last year and a half has been to not be dealing with that all the time!!!!
We also now have the Special Needs Bus come to our door!!!! It picks up Mason and Sydney every morning, and drops them off!! I'd been trying to get that for over two years! It's very exciting for Mason and much less stressful for me!
Well, I should try to get to bed earlier than usual today. Get over this cold........
www.masonm.blogspot.com
I also want to say thanks for praying for the people in trouble that I e-mailed about recently.
- Malcolm, my cousin's husband is at home and on the mend. (serious flesh-eating disease) He is able to walk, and they are doing skin grafts to fix that leg which was eaten away. He has been quite overwhelmed that you ( and a couple of other prayer groups) would pray for him!
- Daryl's aunt had surgery for shingles in her eye, but is still at risk to get that in her other eye as well as several other medical conditions flaring up, keeping her in the hospital.
New prayer request:
- I just have to ask this because my heart breaks for this family. The mom was a very close friend to my sister, as well as being our neighbors, growing up - small community - they still keep in touch:
Cailyn just turned 10 years old on Feb. 24.
Friday, Feb 23 Cailyn had a severe stomach ache so they took her to the Hospital. It was discovered that there was a large mass in her abdomen. Surgery was done on Wednesday when the larger than a grapefruit tumor was removed as well as one ovary. The one ovary was completely infected and the tumor was sucked on to a number of different organs but had apparently not infected them. It was also discovered that the tumor had ruptured as well, spilling tumor cells all over the inside of her abdomen. This happened probably at the time of the severe stomach pain the previous Friday or possibly even at the onset of surgery. Not all of the pathology reports are back but yes, this is cancer. It is a relatively rare one called germ cell cancer. Generally this is a very treatable type of cancer although the size of the tumor, the rupturing of the tumor, and even what the final lab tests determine may make it a bigger challenge. Starting tomorrow (Monday) they will be doing tests to determine if the cancer is anywhere else particularly the lungs and bones as that is what this cancer sometimes goes. They meet with the doctors again on Friday and the plan is to start chemo on the following Monday. She will be staying in the hospital for the first 3 weeks of treatment to keep an eye on her as well as help manage pain and nausea.
As for how she is doing now, she did great following the surgery and there was talk of letting her out of the hospital for a few days. That changed on Saturday when she ended up with a high fever and vomiting. Saturday was a rough day for her.
The family will be getting a family picture taken this week. After that, sometime on the weekend, they plan on buzz cutting her hair. They were told that is a lot less traumatic than having big chunks of it fall off and that will probably happen within the first 2-3 days of the start of the chemo.
Shirley
2 Corinthians 1:3,4 Message: All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.
Well it's been nearly six months since I filled you in out the latest with Mason. He just continues to amaze us all the time. Comprehension levels keep going up and he's been putting two word phrases more frequently. So much of it is baby steps, but we notice every detail of progress. We just take for granted that the girls continue to progress that we don't notice the details as closely.
Christmas was a blast! NOT! The neat thing was that Mason understood what the gifts were about! In the past we would let him play with his gift beforehand so that he could get excited when he recognized it when he opened it. All the excitement though, increased his seizures a bit, and made him VERY incorrigible!!! Cranky, uncooperative - stressful. All of it was progress, but difficult. That first Monday back to school was Christmas Vacation to me!!! Since then he's been doing a lot better in the behavior department.
I wanted to tell you a bunch of 'Mason stories' today, but I'm kinda thick with a head cold. Got it from Mason! He's a kid that next-to-never gets sick. But last week he did catch a cold and on Tuesday afternoon the fever came on. Then it triggered a status (seizure that doesn't stop) seizure . The seizure ended up lasting 3 hours that night. In him it was mostly staring off with watery eyes and a bit of eye rolling. Status increases body temp, so they feed off each other and that's when we need extra intervention. (The last time he had a fever, nearly 2 years ago, we needed IV fluids to get the temp down when the Tylenol didn't help at all.) It was a hard decision to make, because Mason didn't look like he was having a seizure. I knew the signs, so I had to explain over and over to the ambulance guys, nurses and doctor. I felt so sad for him because he was scared of the ambulance, then of the hospital. Because of his greatly increased level of awareness since surgery, he now gets scared, knows he's scared, and was saying "cared" all the way in. :-( Yet it was really neat to see him able to express his emotions! Bittersweet.
This time Advil worked at the hospital - they give a higher dose than we normally do at home. 15-20 minutes later I saw the "seizure look" on his face just go away. I touched his forehead and it was cool. No IV was needed!!!! That's a whole event that takes 4 people to get done. I called the ambulance around 7:30 and I called Daryl to pick us up at 8:40. Fast!!! There were a couple of people who knew and prayed. :-) I kept sane!!! And Mason was pretty good after a while at the hospital.
What I didn't expect was tears near the surface (me). It was a big flashback to what life used to be like on a daily basis. Not the hospital part, but the ongoing crisis or near-crisis. Always being on edge, watching. Emotions having to be set aside regularly to be able to function to help my baby. How amazing the last year and a half has been to not be dealing with that all the time!!!!
We also now have the Special Needs Bus come to our door!!!! It picks up Mason and Sydney every morning, and drops them off!! I'd been trying to get that for over two years! It's very exciting for Mason and much less stressful for me!
Well, I should try to get to bed earlier than usual today. Get over this cold........
www.masonm.blogspot.com
I also want to say thanks for praying for the people in trouble that I e-mailed about recently.
- Malcolm, my cousin's husband is at home and on the mend. (serious flesh-eating disease) He is able to walk, and they are doing skin grafts to fix that leg which was eaten away. He has been quite overwhelmed that you ( and a couple of other prayer groups) would pray for him!
- Daryl's aunt had surgery for shingles in her eye, but is still at risk to get that in her other eye as well as several other medical conditions flaring up, keeping her in the hospital.
New prayer request:
- I just have to ask this because my heart breaks for this family. The mom was a very close friend to my sister, as well as being our neighbors, growing up - small community - they still keep in touch:
Cailyn just turned 10 years old on Feb. 24.
Friday, Feb 23 Cailyn had a severe stomach ache so they took her to the Hospital. It was discovered that there was a large mass in her abdomen. Surgery was done on Wednesday when the larger than a grapefruit tumor was removed as well as one ovary. The one ovary was completely infected and the tumor was sucked on to a number of different organs but had apparently not infected them. It was also discovered that the tumor had ruptured as well, spilling tumor cells all over the inside of her abdomen. This happened probably at the time of the severe stomach pain the previous Friday or possibly even at the onset of surgery. Not all of the pathology reports are back but yes, this is cancer. It is a relatively rare one called germ cell cancer. Generally this is a very treatable type of cancer although the size of the tumor, the rupturing of the tumor, and even what the final lab tests determine may make it a bigger challenge. Starting tomorrow (Monday) they will be doing tests to determine if the cancer is anywhere else particularly the lungs and bones as that is what this cancer sometimes goes. They meet with the doctors again on Friday and the plan is to start chemo on the following Monday. She will be staying in the hospital for the first 3 weeks of treatment to keep an eye on her as well as help manage pain and nausea.
As for how she is doing now, she did great following the surgery and there was talk of letting her out of the hospital for a few days. That changed on Saturday when she ended up with a high fever and vomiting. Saturday was a rough day for her.
The family will be getting a family picture taken this week. After that, sometime on the weekend, they plan on buzz cutting her hair. They were told that is a lot less traumatic than having big chunks of it fall off and that will probably happen within the first 2-3 days of the start of the chemo.
Shirley
2 Corinthians 1:3,4 Message: All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.
Sunday, September 24, 2006
One year after Surgery!
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!!
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, 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
Monday, December 19, 2005
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
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
Saturday, October 29, 2005
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
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
Sunday, October 23, 2005
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???”
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???”
Sunday, October 16, 2005
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.
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
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
Monday, October 10, 2005
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
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
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