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
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