Today I got to say goodbye to one of Joey's therapists...his dietitian. This is the first therapist involved with Joey that we have been able to say "we don't need you anymore" to, and it feels GREAT! One less person visiting the house, one less note to add to our ever-growing binder. I certainly don't anticipate we will be giving out walking papers to any other therapists but it sure feels good to cut down Joey's "fan club" by one!
I am pleased to report that Joey is eating extremely well. He gave up Pediasure Plus from a bottle when Ben was about one month old and has never looked back. His tolerance for texture has been steadily increasing and the variety of foods he is eating is the best it's ever been (can you say green beans? peas? beef???). We still have a long way to go to feeding independence as he is not feeding himself at all and still consumes purees and fork-mashed foods, but I am 1000% confident he is getting all of the nutrients he needs on a daily basis and has for quite some time. It makes working on the other stuff a whole lot easier.
Joey also received a visit at preschool from the special education teacher and vice-principal from the elementary school he will be starting in September. I stuck around for the morning and watched Joey through the one-sided mirror window, just to see what they were seeing. I was impressed that the vice-principal came as well, and he sat with me, asking questions, throughout their visit. They were there to assess his needs regarding an educational assistant and equipment he will need in September. While neither of them gave me the warm and fuzzies I do feel like they are caring people who are good at their jobs, I have a lot of confidence that they will do everything possible to make this transition as easy as possible. We are having a big team meeting at the school on May 11th so I am preparing with questions and concerns that I would like addressed.
Ben, my Sweet Potato, is growing and thriving. I can't believe he's 7 months old! I am in love with the little personality he has developed, he is a complete joy to have in our lives. He just began rolling both ways in the past week so I am bracing myself for his increased mobility and the baby-proofing that we'll need to do. We've been pretty active together when Joey is in school, doing mommy and baby yoga and aquafit togther, I'm enjoying our alone time together as I sometimes feel like he doesn't get as much of our attention as Joey did when he was a baby. A mother's guilt I suppose...
- P, J, J & B
Wednesday, April 21, 2010
Tuesday, April 20, 2010
Grab the Kleenex
Someone brought this blog to my attention, and I mistakenly read this entry first thing this morning, right before the morning rush to get 2 kids out the door and Joey to preschool by 9am.
I have never written about Joey's birth, not even in a journal for myself. The pages in his baby book remain blank, I look at them every so often and say to myself that I'll get around to it.
It's been 4 years.
I can't bring myself to do it. The entire experience, including his birth, me leaving the hospital without him and the 26 days he spent there on his own are just too painful for me to recall in any great detail, though I know I should sit down and write it out before all of the details are gone forever. I'm sure I've already lost a lot by waiting this long.
Then I read this blog. This Mom wrote about the birth of her daughter 7 days later. Her daughter that was born with Down Syndrome, which they were not aware of beforehand. The fact that she threw in some AMAZING photography of the day really had an effect on me.
Anyway, here it is. I warn you, you WILL shed a tear, so get the kleenex.
http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
I have never written about Joey's birth, not even in a journal for myself. The pages in his baby book remain blank, I look at them every so often and say to myself that I'll get around to it.
It's been 4 years.
I can't bring myself to do it. The entire experience, including his birth, me leaving the hospital without him and the 26 days he spent there on his own are just too painful for me to recall in any great detail, though I know I should sit down and write it out before all of the details are gone forever. I'm sure I've already lost a lot by waiting this long.
Then I read this blog. This Mom wrote about the birth of her daughter 7 days later. Her daughter that was born with Down Syndrome, which they were not aware of beforehand. The fact that she threw in some AMAZING photography of the day really had an effect on me.
Anyway, here it is. I warn you, you WILL shed a tear, so get the kleenex.
http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
Monday, April 19, 2010
New Neuro, New Meds
I can't believe it's been 2 months since I updates, time has FLOWN by. Lots of changes and news.
First off, Joey's seizures. We started the valproic acid, Joey took it for about a month and at our follow up appointment with our pediatrician it was decided to wean him off prior to his appointment with the neurologist. It wasn't making much of a difference, he was still having at least one or two seizures a day. The pediatrician wasn't comfortable increasing the dose or changing medications....I brought the videos of the seizures with me to the appointment, and while he is sure it's some sort of "neurological event" that Joey is experiencing he said they weren't common seizures and wanted the neurologist to decide where to go from here. So we discontinued the medication and by the time we met with Dr. M at Sick Kids last week he had been off the medication for about 2 weeks.
Dr. M is the neurologist we met with a few times a couple of years ago when Joey was originally diagnosed with Angelman Syndrome. Once it was determined that Joey didn't actually have AS, and at the time he wasn't experiencing seizures, Dr. M said there was no reason for Joey to remain his patient because his specialty was AS and seizures. From there we have met with numerous neurologists, none of whom we really connected with (to put it nicely!). Now that Joey is having seizures I requested that we see Dr. M again and now he will be our neurologist for good, which makes us very happy as he is a wonderful man.
We met with Dr. M last Wednesday. We showed him the video of Joey's seizures, he thinks they are "complex partial" seizures, rather than "atonic". He has prescribed another med, Trileptal, which is another class of medication and is prescribed specifically for this type of seizure (and various mental illnesses, including depression and bi-polar disorder) so we're hopeful this will put an end to the seizures. Whiel the seizures themselves are short and do not in an of themselves cause any harm to Joey, he does lose most of his muscle control which can cause him to fall. I don't want him to start falling while he's learning to walk! We will have a follow up at with Dr. M in 2 months, along with another EEG at Sick Kids under sedation to hopefully get a better idea of what is going on.
In other Joey news, I am pleased to say that he is eating better than ever before! While it's still mostly purees and baby foods he is eating up to 80 calories in a meal, which is amazing for him. He is eating a lot of things he previously refused, like green beans, peas and cereals. Starting this week we are going to experiment with his prescool snack. I've been sending chocolate pudding for his snack, because it's easy and it's guaranteed Joey will eat it. Often I would pack something else, like a yogurt or fruit, but of course he was refusing it because he knew the chocolate pudding wasn't far behind. Since he is eating such huge breakfasts now I think it's safe to start sending fruit or yogurt and NO pudding...if he doesn't eat his snack it's not the end of the world, he has lunch an hour later. We'll see how this goes!
This week the special education teacher from the school Joey will be attending next year will be coming to observe him at preschool. This is in preparation for our big meeting at the school on May 11th, where we will be getting together with the teacher, the principal and all of Joey's therpaists to discuss his transition to junior kindergarten in September. ~sniff sniff~ I am a little sad that Joey is going to be starting school, a little nervous about how he will cope with such a huge transition and also really excited for his world to be expanded so much. He has made such huge progress attending preschool for just 5 hours a week, I am eagerly anticipating huge leaps when he's attending school 8 hours a day, 5 days a week.
Last month we braved the drive to Florida with both kids, taking 3 days to get down there. While the kids were AMAZING (no whining or crying at all!) that's because we stopped a lot and spent 2 nights in hotels on the way down. The boys and I ended up staying an extra week with Gramma Phyllis and Papa Roy and Jason drove back on his own. I flew back with the boys, and while most everyone was very helpful I don't think I will do that again until one of them is walking and can understand simple directions. It was exhausting! But well worth it, 2 weeks in Florida was a great treat. I'll post photos soon.
- P, J, J & B
First off, Joey's seizures. We started the valproic acid, Joey took it for about a month and at our follow up appointment with our pediatrician it was decided to wean him off prior to his appointment with the neurologist. It wasn't making much of a difference, he was still having at least one or two seizures a day. The pediatrician wasn't comfortable increasing the dose or changing medications....I brought the videos of the seizures with me to the appointment, and while he is sure it's some sort of "neurological event" that Joey is experiencing he said they weren't common seizures and wanted the neurologist to decide where to go from here. So we discontinued the medication and by the time we met with Dr. M at Sick Kids last week he had been off the medication for about 2 weeks.
Dr. M is the neurologist we met with a few times a couple of years ago when Joey was originally diagnosed with Angelman Syndrome. Once it was determined that Joey didn't actually have AS, and at the time he wasn't experiencing seizures, Dr. M said there was no reason for Joey to remain his patient because his specialty was AS and seizures. From there we have met with numerous neurologists, none of whom we really connected with (to put it nicely!). Now that Joey is having seizures I requested that we see Dr. M again and now he will be our neurologist for good, which makes us very happy as he is a wonderful man.
We met with Dr. M last Wednesday. We showed him the video of Joey's seizures, he thinks they are "complex partial" seizures, rather than "atonic". He has prescribed another med, Trileptal, which is another class of medication and is prescribed specifically for this type of seizure (and various mental illnesses, including depression and bi-polar disorder) so we're hopeful this will put an end to the seizures. Whiel the seizures themselves are short and do not in an of themselves cause any harm to Joey, he does lose most of his muscle control which can cause him to fall. I don't want him to start falling while he's learning to walk! We will have a follow up at with Dr. M in 2 months, along with another EEG at Sick Kids under sedation to hopefully get a better idea of what is going on.
In other Joey news, I am pleased to say that he is eating better than ever before! While it's still mostly purees and baby foods he is eating up to 80 calories in a meal, which is amazing for him. He is eating a lot of things he previously refused, like green beans, peas and cereals. Starting this week we are going to experiment with his prescool snack. I've been sending chocolate pudding for his snack, because it's easy and it's guaranteed Joey will eat it. Often I would pack something else, like a yogurt or fruit, but of course he was refusing it because he knew the chocolate pudding wasn't far behind. Since he is eating such huge breakfasts now I think it's safe to start sending fruit or yogurt and NO pudding...if he doesn't eat his snack it's not the end of the world, he has lunch an hour later. We'll see how this goes!
This week the special education teacher from the school Joey will be attending next year will be coming to observe him at preschool. This is in preparation for our big meeting at the school on May 11th, where we will be getting together with the teacher, the principal and all of Joey's therpaists to discuss his transition to junior kindergarten in September. ~sniff sniff~ I am a little sad that Joey is going to be starting school, a little nervous about how he will cope with such a huge transition and also really excited for his world to be expanded so much. He has made such huge progress attending preschool for just 5 hours a week, I am eagerly anticipating huge leaps when he's attending school 8 hours a day, 5 days a week.
Last month we braved the drive to Florida with both kids, taking 3 days to get down there. While the kids were AMAZING (no whining or crying at all!) that's because we stopped a lot and spent 2 nights in hotels on the way down. The boys and I ended up staying an extra week with Gramma Phyllis and Papa Roy and Jason drove back on his own. I flew back with the boys, and while most everyone was very helpful I don't think I will do that again until one of them is walking and can understand simple directions. It was exhausting! But well worth it, 2 weeks in Florida was a great treat. I'll post photos soon.
- P, J, J & B
Tuesday, February 23, 2010
Joey's Seizures
We've managed to get a couple of Joey's seizures on video. The first was taken on Saturday and we didn't realize until after the fact that the camera was set to capture video in low quality, so it's pretty grainy:
The second was taken this morning, just before we were getting ready to leave for the hospital for Joey's EEG. It was pretty early and we didn't have many lights on so it was a really dark video that I lightened afterwards, so again, not the best quality:
We don't normally just let him fall over like that (and he's totally fine, I promise!) but he also doesn't normally fall on his head when he is leaning against something. In the first video he sort of gently slides down, but he just fell over fast and hard in the second video. You'll notice in both that he very quickly recovers and it's like nothing ever happened. Unfortunately we just had to do what we had to do in order to get some video of this, it was pretty difficult not to just drop the camera and attend to Joey.
I brought the second video with me today and the technician who performed the EEG was very glad to see it. She said that based on the type of seizures he is having (atonic seizures) she didn't expect to see much abnormal activity on the EEG because there is no "focal point" with that type (not sure what that means yet, haven't had a chance to Google it!). Sure enough, she didn't see anything unusual on his EEG but she said that what Joey is experiencing is definitely seizure activity.
So I will bring the videos with me to the pediatrician in 2 weeks so he can also see what is happening. While I am not happy Joey is having seizures I am glad that someone has finally confirmed for us that these are indeed seizures.
- P, J, J & B
The second was taken this morning, just before we were getting ready to leave for the hospital for Joey's EEG. It was pretty early and we didn't have many lights on so it was a really dark video that I lightened afterwards, so again, not the best quality:
We don't normally just let him fall over like that (and he's totally fine, I promise!) but he also doesn't normally fall on his head when he is leaning against something. In the first video he sort of gently slides down, but he just fell over fast and hard in the second video. You'll notice in both that he very quickly recovers and it's like nothing ever happened. Unfortunately we just had to do what we had to do in order to get some video of this, it was pretty difficult not to just drop the camera and attend to Joey.
I brought the second video with me today and the technician who performed the EEG was very glad to see it. She said that based on the type of seizures he is having (atonic seizures) she didn't expect to see much abnormal activity on the EEG because there is no "focal point" with that type (not sure what that means yet, haven't had a chance to Google it!). Sure enough, she didn't see anything unusual on his EEG but she said that what Joey is experiencing is definitely seizure activity.
So I will bring the videos with me to the pediatrician in 2 weeks so he can also see what is happening. While I am not happy Joey is having seizures I am glad that someone has finally confirmed for us that these are indeed seizures.
- P, J, J & B
Monday, February 22, 2010
Lessons From Ben
Ahhh, my sweet baby Ben. Already I feel as though he is somewhat left out of our public celebrations of achievement. But that's not to say that in the privacy of our own home we don't marvel over his milestones, because we absolutely do. All of the little things that Ben does that Joey did so late, or not at all, are all cause for a "Honey, come quick! Look at what Ben is doing!" in our household. With Joey we shelved the baby books at around 4 months, since it was pretty clear by then that he was not going to follow the standards set by typically-developing children. With Ben it was a pleasure to pull them off the shelf and exciting to follow along as he does his thing. So far he has done what he's supposed to when he's supposed to, which is such a relief.
Baby Ben is now referred to as "Big Ben"...he weighed in at 5 months last Wednesday at 18.5 lbs! To put that in perspective Joey was 17 lbs on his first birthday. Ben falls in the 75th percentile for weight and 95th percentile for height and head circumference. He's a big baby! I know you're not supposed to compare kids but I think it's only natural to compare your experiences, and I think it's harmless enough as long as you're not expecting one kid to "measure up" to another. Despite having 2 boys we're not able to re-use a lot of Joey's clothing. Joey needs all of his waistbands taken in while Ben needs them taken out! From a very young age, maybe 6 months, I was shopping for tight-waisted clothing for Joey and already I am looking for loose-waisted clothing for Ben. I recently had to put a pair of size 6-12 month pants in the donation bag because they were just too tight on Ben, it looked like I had put a rubber band around his waist!
Here's a couple of pictures from Valentines Day...Joey in 2007 and Ben in 2010,both wearing the same outfit. Joey was 10.5 months old and Ben 4.5 months old, but fitting into the same outfit!
I love seeing Joey through Ben's eyes. Ben only sees his older brother, he doesn't see any limitations or disabilities, he doesn't know that Joey *should* be talking, or *should* be walking. He sees a sweet, gentle and happy little boy who provides endless hours of entertainment. Ben contentedly sits in his car seat while we work with Joey on his physiotherapy at preschool, just watching quietly, almost as though he doesn't want to interrupt this very important work. In return Joey sees a little baby who doesn't threaten him, or bully him, or expect anything of him except smiles and laughter. Such an amazing start to what I hope is a close friendship between brothers.
Baby Ben is now referred to as "Big Ben"...he weighed in at 5 months last Wednesday at 18.5 lbs! To put that in perspective Joey was 17 lbs on his first birthday. Ben falls in the 75th percentile for weight and 95th percentile for height and head circumference. He's a big baby! I know you're not supposed to compare kids but I think it's only natural to compare your experiences, and I think it's harmless enough as long as you're not expecting one kid to "measure up" to another. Despite having 2 boys we're not able to re-use a lot of Joey's clothing. Joey needs all of his waistbands taken in while Ben needs them taken out! From a very young age, maybe 6 months, I was shopping for tight-waisted clothing for Joey and already I am looking for loose-waisted clothing for Ben. I recently had to put a pair of size 6-12 month pants in the donation bag because they were just too tight on Ben, it looked like I had put a rubber band around his waist!
Here's a couple of pictures from Valentines Day...Joey in 2007 and Ben in 2010,both wearing the same outfit. Joey was 10.5 months old and Ben 4.5 months old, but fitting into the same outfit!
And some bathtime photos which really show off that adorable baby chunk:
So enough about his size...Ben has also proven to be the sweetest, most even-tempered and agreeable baby. He picked up on the rhythm of our household and just followed along all on his own, he has a nice long nap in the afternoon just like his big brother and most recently has slept through from 8:30pm to 7am on most nights. When he is awake he is just so happy and content, he is at that magical age when just looking at him and smiling can cause an outburst of laughter. He finds Joey particularly amusing, and Joey is just so gentle with him...most of the time. The very few times that Joey has been less than gentle was not on purpose, he just doesn't understand that he can't climb on Ben like he climbs on everyone else. I am often asked how Joey is adjusting to having Ben around...for the first month I think his nose was a bit out of joint, and he expressed his displeasure by crying at bedtime every.single.night for 4 weeks straight. That quickly ended and now it seems they love having each other around. When I pick Joey up from preschool and put him in his car seat it is a struggle to get him buckled up because he is lunging over at Ben trying to make him laugh.
Here is a little video I call the Joey and Ben Show. Joey is a bit of a scene-stealer, but Jason and I laugh our heads off every time we watch it:
Some random photos, just because:
I love seeing Joey through Ben's eyes. Ben only sees his older brother, he doesn't see any limitations or disabilities, he doesn't know that Joey *should* be talking, or *should* be walking. He sees a sweet, gentle and happy little boy who provides endless hours of entertainment. Ben contentedly sits in his car seat while we work with Joey on his physiotherapy at preschool, just watching quietly, almost as though he doesn't want to interrupt this very important work. In return Joey sees a little baby who doesn't threaten him, or bully him, or expect anything of him except smiles and laughter. Such an amazing start to what I hope is a close friendship between brothers.
Saturday, February 13, 2010
Joey's New Tricks
As promised, here are some videos of Joey's new tricks. The first is Joey attempting the stairs from the playroom to the kitchen. Ironically, these are the stairs he fell down when he first got mobile about 2 years ago, and you'll notice they are hardwood with tile at the bottom. Eeek! But now he's showing interest in going up. The toy I'm using was actually a Christmas gift for Ben from Nonno Joe and Nanny Sue but Joey has made it his favourite, so it's our current method of motivation.
Here is the first of 3 videos of Joey using his latest walker. This is the first walker where there is no support around his body at all, it's all up to him to hold on, steer and walk. The only thing we're doing to help is we attached two "leashes" to the handles to pull back on a bit because otherwise he gets going way too fast and wipes out, LOL. This is in the basement of his preschool, where he receives therapy weekly. His therapy assistant Patricia is the one "holding the reins" and you can also see his Resource Teacher in one of the videos as well.
The cool thing about this last one is that he pulls himself up and just gets going again!
Day one of the medication for Joey's seizures has gone off without a hitch. Well, mostly. He doesn't like taking it, and it's a red liquid, and he drools, so we still have to figure out the logistics of doing this 3x/day without staining all of his clothing. But it doesn't appear to be having an effect on him in any way yet...no "dopiness" at all. He's had 3 seizures today, the first two were the same as always and the last one was a bit shorter. Coincidence? Probably, I doubt the medication would have any effect after 2 doses. Next post will be dedicated to sweet Baby Ben, since he too has had some amazing changes! - P, J, J & B
Here is the first of 3 videos of Joey using his latest walker. This is the first walker where there is no support around his body at all, it's all up to him to hold on, steer and walk. The only thing we're doing to help is we attached two "leashes" to the handles to pull back on a bit because otherwise he gets going way too fast and wipes out, LOL. This is in the basement of his preschool, where he receives therapy weekly. His therapy assistant Patricia is the one "holding the reins" and you can also see his Resource Teacher in one of the videos as well.
The cool thing about this last one is that he pulls himself up and just gets going again!
Day one of the medication for Joey's seizures has gone off without a hitch. Well, mostly. He doesn't like taking it, and it's a red liquid, and he drools, so we still have to figure out the logistics of doing this 3x/day without staining all of his clothing. But it doesn't appear to be having an effect on him in any way yet...no "dopiness" at all. He's had 3 seizures today, the first two were the same as always and the last one was a bit shorter. Coincidence? Probably, I doubt the medication would have any effect after 2 doses. Next post will be dedicated to sweet Baby Ben, since he too has had some amazing changes! - P, J, J & B
Friday, February 12, 2010
Long Overdue, Lots of News
Some cuteness from my boys right off the top :)On to other news....
Lots of progress with Joey. He is using a new walker at preschool and when he is in the mood he can really get going. As usual it's a motivation thing with him, and like his mother he also needs to be very well rested to be cooperative. We did manage to get some great video though, which I will post soon.
Joey has made some gains at preschool with his peers as well. Although he still eats mostly purees he has eaten snack with his friends, when the menu is applesauce or yogurt. Twice now there have been chocolate cupcakes and Joey has taken a few bites...he doesn't chew, but sort of sucks it off the spoon, sucks it in his mouth to sort of melt it down and then swallows, but it's a start.
He also did something pretty amazing this past Thursday and I am so grateful to his wonderful teachers who immediately grabbed the camera and documented it for us. He was scooting around on the floor as usual, playing with a truck, when it suddenly hit him that some of his friends seemed to be doing something fun at the tables, so he moseyed on over and pulled himself up to play at the table!
What I love most about those pictures is that he looks just like all the other kids. It's so heartwarming as his Mom to see him looking so "normal".
Last week I registered Joey for kindergarten. ~sniff sniff~ I can't believe my baby is going to be 4 years old in less than 2 months, and will be starting school in September! Our local school was one of those chosen to be the first to implement full day, full week kindergarten for 4 and 5 year olds in Ontario, which works out well from a daycare perspective. The school will be offering before and after school care on-site so he won't have to move from school to a different location for daycare until I am finished work.
The registration itself was much better than expected. Joey was at preschool so I went with Ben, who was extremely charming and flirted with everyone. I am in love with the school, so clean and modern while still quite small. All of the staff I met were wonderful, the other parents registering kids for kindergarten that have older kids at the school were all telling me how wonderful it is. The special education teacher, Mrs.B, spent over an hour with me and I was very impressed with the facilities they have for students with special needs. I also appreciated her attitude...after asking me about his disabilities and what accommodations they will need to make for him she then spent lots of time asking about who Joey is aside from what he *can't* do. She asked what he likes, what he's good at, how he can best be comforted when upset. It made me feel good as a parent knowing that she cares about him as a person, not just a disabled kid. So the next step is to bring Joey for a tour, and Mrs. B. welcomes us at any time, and as often as we'd like. It's literally a 5 minute walk from our house so I'd like to get Joey over there often before September.
Now for the bad news...Joey has developed seizures. We had noticed a strange thing Joey would do once in a while, he would sort of make a humming noise, his muscle tone would decrease and he'd drool more than normal. At first we thought it might be another one of his unusual sensory-seeking behaviours, and it only happened very infrequently. Over the past few weeks Jason and I noticed a marked increase in frequency and started to wonder if it was a controllable behaviour or seizure activity. This morning it happened while he was in his high chair for breakfast and he slumped right over and put his head on the table, and his eyes sort of closed and rolled back a little bit. I called our nurse practitioner just to leave a message, hoping he'd talk to our doctor on Monday when she was in next and they could let me know what to do, I wasn't overly concerned. He was immediately concerned and called our doctor at home. Our doctor wanted us to go to the hospital immediately to meet with the pediatrician on call, who happens to be our regular pediatrician (Dr. K.) anyway.
After describing to the Dr.K what Joey's episodes are like he is positive they are atonic seizures, will likely continue to increase in frequency (they've gone from maybe 1x/week 3 months ago to several times a day...today he's had 2 already) and as he learns to walk there are increased risks of injury from falling. He suggests starting medication right away and has said that he's not overly surprised at this development because Joey already has neurological issues going on. He said he would have been more surprised if we had made it out of childhood without seizures developing. He basically said it's very likely Joey will need to be on meds for the long term, like well into adulthood. And these meds are 3x/day...blech. To date Joey has never needed medication for anything other than Tylenol :(
So he gave us a prescription for Epival (Valproic Acid) and has set us up with an EEG on the 23rd. Tonight Jason and I were discussing whether or not we want to start medication, and of course we were second-guessing what we've observed and wondered if maybe it's NOT seizures. As if he was listening to us Joey proceeded to have a seizure while standing at the couch, and fell straight backwards, banging his head on the floor. That pretty much sealed the deal for us, we'll be starting the meds in the morning.
There's more to update, and of course my little Ben has many honourable mentions, but it is late and we have a long first day of new medications ahead of us tomorrow so that's all for now.
- P, J, J & B
Sunday, January 10, 2010
Ooops! Sorry to leave you hanging.
The holidays were so busy I just didn't have time to update after Joey's appointment in December with the neurosurgeon.
Anyway,the neuro appt was as expected, another doctor with a God complex. When I asked my first question he cut me off with "if you don't believe me I'll send you for a second opinion".
~sigh~
I wish doctors understood it's not that we don't believe them, it's that we just want to understand what they're telling us.
He claims that "no doctor in Canada would operate on Joey's cyst even with a gun to their head" and "I will see 4 more of these cycts today and by far Joey's will be the smallest". So glad he's clairvoyant.
I tried to explain that while he sees this all the time we don't, and we're talking about MY CHILD, but that got him even more ridiculously defensive. I think we have a big black X on our file there as "difficult parents who ask too many questions". So we'll do another MRI in 6 months to monitor the growth and that's it for now. By that time our regular neuro will be back from sabbatical thank God, since she is very kind and takes the time to explain things.
The positive thing is that it seems the cyst presents no immediate danger according to 2 neurologists now, so we'll put it out of our mind for now.
Ben is growing like a weed and Joey has made some progression towards walking, including ANOTHER new walker. I'll post more soon!
- P, J, J & B
Anyway,the neuro appt was as expected, another doctor with a God complex. When I asked my first question he cut me off with "if you don't believe me I'll send you for a second opinion".
~sigh~
I wish doctors understood it's not that we don't believe them, it's that we just want to understand what they're telling us.
He claims that "no doctor in Canada would operate on Joey's cyst even with a gun to their head" and "I will see 4 more of these cycts today and by far Joey's will be the smallest". So glad he's clairvoyant.
I tried to explain that while he sees this all the time we don't, and we're talking about MY CHILD, but that got him even more ridiculously defensive. I think we have a big black X on our file there as "difficult parents who ask too many questions". So we'll do another MRI in 6 months to monitor the growth and that's it for now. By that time our regular neuro will be back from sabbatical thank God, since she is very kind and takes the time to explain things.
The positive thing is that it seems the cyst presents no immediate danger according to 2 neurologists now, so we'll put it out of our mind for now.
Ben is growing like a weed and Joey has made some progression towards walking, including ANOTHER new walker. I'll post more soon!
- P, J, J & B
Wednesday, December 9, 2009
Not much to update, just that our consult with the neurosurgeon has been bumped up to December 18 from January 8. I'm crossing my fingers that this guy will be a bit more thorough in his explanations. It could go either way...he's seen the email I sent to Dr. M so he may feel badly for us and want to explain things well, or we may now have a big black X on Joey's file at Sick Kids as being "difficult parents". We shall see, I'm trying to stay positive about it.
In other news...here are some photos that were taken at a grocery store photo studio. I don't usually go to those after the bad experience I had with Joey (I took him at 8 months and when I told the photographer that he couldn't sit up because of a medical condition I got a big sigh, followed by "well, that will make things difficult". That was the last time we ever went somewhere to have pictures done, and not coincidentally when I bought my Canon Rebel DSLR and started taking pictures myself!) but we did this to get a picture of Joey and Ben along with cousin Ty as a gift for Gramma. I made up my mind earlier that day not to get all uptight about this, as we are only given a 20 minute allotment to get these pictures done, and we were dealing with a 9 week old, a 10 month old and a disabled 3.5 year old. I'm glad I gave myself the pep talk because this was a colossal FAIL! Joey started crying as soon as he saw Ty and that was it. Ty is a perfectly pleasant, happy and sweet 10-month old but is very busy, as all kids are at that age, and it's just too overwhelming for Joey. He takes some time to warm up to Ty every time we see him and 20 minutes in a strange place just wasn't enough. Anyway, here they are:
Photo #1: Joey only appears mildly annoyed in this one, he hadn't gotten all geared up yet. Ty is one second away from smacking Ben on the top of the head, which resulted in a a brief bit of crying but Ben's tough. I especially like the placement of Joey's right hand.
Photo # 2: Joey now appears to be in great pain, and oddly, he also appears to be a giant! Something about the perspective of this photo is waaaay off. Ty is happy about it all though :)
Photo #3: Ty has left the room! We couldn't coax a smile out of Ben, nor could we get him to actually look at the camera. And as Jason says..."gee, where have I seen a baby in a basket against a white background before?" Yeah, not very original.
Photo #4: This is actually photo #1, taken at the very beginning before Ty or Ben entered the room.
And Photo #5: This is the best that could be done to get the two of them together. Blah.
I took some great pictures for our Christmas card but I'll save the one we used for the new year, I don't want to spoil the surprise for those of you on our Christmas card list! But here are some others to tide you over:
I'm trying to post some videos of Joey and Ben together but am having technical difficulties, so I'll save those for another day.
I'm trying to post some videos of Joey and Ben together but am having technical difficulties, so I'll save those for another day.
- P, J, J and B
Monday, November 30, 2009
Benign
Email from Dr. M, the Chief of Pediatric Neurology, received today:
Thank you --
I have had Joey's MRI from November 2006 read here. The cyst is not seen.
I have asked Dr. T (the neurosurgeon) to review the MRIs --he feels that the cyst seen in the October 2009 scan is benign and there is no need for concern, however he will attempt to arrange an earlier appointment so you can discuss the cyst directly with him.
I had left a telephone message for you --but you do not need to return my call unless you have other concerns. I will ask our booking office to provide an appointment for Joey with Dr. B (the neuro that we had asked to be switched to after our first experience with Dr. L, but she is on sabbatical until July 2010) as soon as she returns.
- Dr. M.
Good enough for me....for now. Of course I still have questions:
WHY it is considered benign? How can something be so big and push on the brain so much and not be a problem?
How can they be sure it is not causing pressure and/or headaches?
How do they know it is not responsible for some of Joey's unusual and unexplained emotional outbursts?
How big will they allow it to get before doing something about it?
How often will it be monitored by MRI?
Can those MRIs be done at our local hospital?
At the very latest we should see Dr. T January 8th as originally scheduled, but it sounds like it could be sooner. I feel a bit better about the whole thing now that 2 other people have reviewed Joey's case, so now I will be a good girl and wait patiently for my turn to see the fancy doctor :)
- P, J, J & B
Thank you --
I have had Joey's MRI from November 2006 read here. The cyst is not seen.
I have asked Dr. T (the neurosurgeon) to review the MRIs --he feels that the cyst seen in the October 2009 scan is benign and there is no need for concern, however he will attempt to arrange an earlier appointment so you can discuss the cyst directly with him.
I had left a telephone message for you --but you do not need to return my call unless you have other concerns. I will ask our booking office to provide an appointment for Joey with Dr. B (the neuro that we had asked to be switched to after our first experience with Dr. L, but she is on sabbatical until July 2010) as soon as she returns.
- Dr. M.
Good enough for me....for now. Of course I still have questions:
WHY it is considered benign? How can something be so big and push on the brain so much and not be a problem?
How can they be sure it is not causing pressure and/or headaches?
How do they know it is not responsible for some of Joey's unusual and unexplained emotional outbursts?
How big will they allow it to get before doing something about it?
How often will it be monitored by MRI?
Can those MRIs be done at our local hospital?
At the very latest we should see Dr. T January 8th as originally scheduled, but it sounds like it could be sooner. I feel a bit better about the whole thing now that 2 other people have reviewed Joey's case, so now I will be a good girl and wait patiently for my turn to see the fancy doctor :)
- P, J, J & B
Wednesday, November 25, 2009
Approximately 45 minutes after sending my email yesterday I received a response from Dr. M:
Thank you for your e-mail.
I'm sorry that you had a difficult experience in our clinic. Would you please courier the CDs of Joey's MRI to me. I will arrange to have the MRI from 2003 loaded onto our system here and then reviewed by neuroradiologists.
We can then discuss the results with Dr. T.
Due to her prompt response time and willingness to deal with this situation I will forgive her error...the first MRI was in 2006, Joey didn't exist in 2003 :)
I sent the CD and reports by Purolator today, guaranteed to be there by 10:30am tomorrow. I'm hopeful she will get back to me by Friday evening.
- P, J, J & B
Thank you for your e-mail.
I'm sorry that you had a difficult experience in our clinic. Would you please courier the CDs of Joey's MRI to me. I will arrange to have the MRI from 2003 loaded onto our system here and then reviewed by neuroradiologists.
We can then discuss the results with Dr. T.
Due to her prompt response time and willingness to deal with this situation I will forgive her error...the first MRI was in 2006, Joey didn't exist in 2003 :)
I sent the CD and reports by Purolator today, guaranteed to be there by 10:30am tomorrow. I'm hopeful she will get back to me by Friday evening.
- P, J, J & B
Tuesday, November 24, 2009
More Unanswered Questions
Rather than re-hashing what happened at our appointment yesterday, which will only make me more angry, I will simply cut and paste the letter I sent to the Associate Pediatrican-in-Chief, Neurology. She is the doctor that called me last week.
Dear Dr. M,
I would like to thank you for taking the time out of what I am sure is a very busy schedule to call me personally regarding Joey's MRI results last week. I appreciate the quick action you took in arranging an appointment for us to meet with Dr. L, and I also appreciate being called again when a cancellation arose for yesterday, allowing us to be seen a week earlier.
However, upon meeting with Dr. L yesterday I was immediately reminded why I had requested for Joey to be transferred to another neurologist. Either Dr. L is constantly plagued with "computer problems" or it has been an unlucky coincidence that each of the three times we've met with him he has been unable to access the files he needed. He began our appointment by apologizing that we waited so long but he had to try 3 different computers to view the CD that contained the images from Joey's first MRI in 2006, though he did give the impression that he was able to view them. He quickly explained what was found and then told us that he is "assuming" what Joey has is an arachnoid cyst but he wasn't sure. I then told him that the MRI report said that Joey does in fact have an arachnoid cyst so I was confused as to why he wasn't sure that was what Joey has, he then concurred and said that yes, Joey has an arachnoid cyst. He told us that is unlikely that surgical intervention was necessary, given that there was no indication the cyst was causing pressure to the brain and given that Joey was not exhibiting any symptoms. When I explained a few things that I suspected could be attributed to this cyst, such as his poor appetite and frequent emotional outbursts that had no rhyme or reason to them, he told us that the cyst could not be causing these symptoms. I felt that perhaps the emotional outbursts were an indication that Joey was suffering from a headaches and Dr. L said he "doubted that very much", despite the fact the Joey is completely non-verbal and intellectually he functions at approximately the level of a nine-month-old. I asked what we should be looking for, he advised us that "waking in the middle of the night screaming in pain and vomiting" was a good indicator of a headache, and also explained what seizures can look like. It was apparent that these were the only two symptoms that Dr. L would accept as being a result of the cyst.
I came prepared with a list of questions, but each time I attempted to ask one I was cut off. At one point I asked what the part of the brain where Joey's cyst is located is responsible for, and he said it really only dealt with emotions. When I asked why it would then not be reasonable to suggest that it could be related to Joey's emotional outbursts he was unable to answer me.
After several attempts Dr. L was able to pull up an image of Joey's most recent MRI to show me the cyst. To me, it appeared to be occupying quite a large space in the brain so I asked how it was that he could be sure that it was not causing pressure, again, he was unable to answer this question for me but rather suggested an eye exam would be useful to make sure there was no pressure on the brain. I asked if it was possible for this cyst to rupture, Dr. L said it was not. When I said that I had done some reading that said it was possible for an arachnoid cyst to rupture causing further problems like hemorrhage, he changed his answer to say it was possible but that he had never once seen it happen. His attitude towards the fact that I had done some reading, such as him asking me to cite my sources, suggests to me that he does not appreciate people trying to educate themselves before meeting with him.
I asked if this cyst would be considered as growing rapidly or slowly, Dr. L replied that getting to this size over 3 years would be considered slow growth. When I asked how he could be sure it had taken 3 years to grow and not 3 months, since he had already told us it wasn't evident on the first MRI, Dr. L replied that he "may have seen a sliver of it" on the first MRI. At this time I became frustrated with the contradiction in his information and asked him "was it there 3 years ago or wasn't it?" since he had told us not 10 minutes beforehand that it was not on the first MRI. At that point his answer indicated that he had NOT EVEN VIEWED the first MRI images, as he answered me by saying he "could not recall". I still am not clear whether the cyst was there 3 years ago or not, therefore the question of whether this cyst s growing rapidly or slowly is also unanswered.
After a brief physical exam Dr. L told us he would refer us to a neurosurgeon, however I advised him that we already had an appointment booked with Dr. T in January. He then suggested we look into MEDEK therapy with Esther Fink, something he suggested to me over 2 years ago, but doesn't seem to know that Ms. Fink is not even accredited by the doctor who developed the therapy! He also recommended horseback therapy...I am sure he was trying to be helpful but after a frustrating 20 minutes of unanswered questions it was like a slap in the face to be told that "the hypotonic kids" seem to respond to animals. I may not be a neurologist but I am an educated person, and I didn't travel all the way to a world-class hospital to be told by a specialist to get my son involved with horses.
At this point I was so upset that I decided not to ask any further questions and to simply wait until our neurosurgery appointment with Dr. T in January. However since leaving there yesterday I became increasingly upset by our experience yesterday, prompting me to write to you today.
I am sure Dr.L is a skilled and knowledgeable neurologist, but unfortunately his ability to impart that knowledge to the parents of his patients seems greatly impaired. We left our appointment with him extremely frustrated and did not feel that our questions were answered adequately. I don't feel my expectations going into this appointment were unreasonable; I did not expect Dr.L to provide definitive explanations for my son's disabilities, but I did expect a yes or no answer to the question of whether the cyst was there 3 years ago or not an whether this growth would be considered rapid or slow and what the difference would be in regards to how the cyst was treated. Our pediatrician sent this referral marked "urgent" yet Dr. L did not feel there was anything urgent about this, but didn't explain why. I also expected Dr. L to be prepared to meet with us, and I don't feel that he was. We did a lot of preparation in advance to ensure we utilized his time wisely and I don't feel the same consideration has been paid to us. His disorganization and contradictory statements does not inspire the greatest of confidence.
I am not sure how realistic it is to request to be seen by another neurologist at this point. I am hopeful that you may be able to review the images from both of Joey's MRIs and if you are able to agree with Dr. L that there is absolutely nothing urgent about Joey's cyst, that it is growing slowly, is not causing pressure to his brain and is not a factor in Joey's symptoms then I will gladly wait until January to meet with Dr. T.
Respectfully,
Pamela L
Dear Dr. M,
I would like to thank you for taking the time out of what I am sure is a very busy schedule to call me personally regarding Joey's MRI results last week. I appreciate the quick action you took in arranging an appointment for us to meet with Dr. L, and I also appreciate being called again when a cancellation arose for yesterday, allowing us to be seen a week earlier.
However, upon meeting with Dr. L yesterday I was immediately reminded why I had requested for Joey to be transferred to another neurologist. Either Dr. L is constantly plagued with "computer problems" or it has been an unlucky coincidence that each of the three times we've met with him he has been unable to access the files he needed. He began our appointment by apologizing that we waited so long but he had to try 3 different computers to view the CD that contained the images from Joey's first MRI in 2006, though he did give the impression that he was able to view them. He quickly explained what was found and then told us that he is "assuming" what Joey has is an arachnoid cyst but he wasn't sure. I then told him that the MRI report said that Joey does in fact have an arachnoid cyst so I was confused as to why he wasn't sure that was what Joey has, he then concurred and said that yes, Joey has an arachnoid cyst. He told us that is unlikely that surgical intervention was necessary, given that there was no indication the cyst was causing pressure to the brain and given that Joey was not exhibiting any symptoms. When I explained a few things that I suspected could be attributed to this cyst, such as his poor appetite and frequent emotional outbursts that had no rhyme or reason to them, he told us that the cyst could not be causing these symptoms. I felt that perhaps the emotional outbursts were an indication that Joey was suffering from a headaches and Dr. L said he "doubted that very much", despite the fact the Joey is completely non-verbal and intellectually he functions at approximately the level of a nine-month-old. I asked what we should be looking for, he advised us that "waking in the middle of the night screaming in pain and vomiting" was a good indicator of a headache, and also explained what seizures can look like. It was apparent that these were the only two symptoms that Dr. L would accept as being a result of the cyst.
I came prepared with a list of questions, but each time I attempted to ask one I was cut off. At one point I asked what the part of the brain where Joey's cyst is located is responsible for, and he said it really only dealt with emotions. When I asked why it would then not be reasonable to suggest that it could be related to Joey's emotional outbursts he was unable to answer me.
After several attempts Dr. L was able to pull up an image of Joey's most recent MRI to show me the cyst. To me, it appeared to be occupying quite a large space in the brain so I asked how it was that he could be sure that it was not causing pressure, again, he was unable to answer this question for me but rather suggested an eye exam would be useful to make sure there was no pressure on the brain. I asked if it was possible for this cyst to rupture, Dr. L said it was not. When I said that I had done some reading that said it was possible for an arachnoid cyst to rupture causing further problems like hemorrhage, he changed his answer to say it was possible but that he had never once seen it happen. His attitude towards the fact that I had done some reading, such as him asking me to cite my sources, suggests to me that he does not appreciate people trying to educate themselves before meeting with him.
I asked if this cyst would be considered as growing rapidly or slowly, Dr. L replied that getting to this size over 3 years would be considered slow growth. When I asked how he could be sure it had taken 3 years to grow and not 3 months, since he had already told us it wasn't evident on the first MRI, Dr. L replied that he "may have seen a sliver of it" on the first MRI. At this time I became frustrated with the contradiction in his information and asked him "was it there 3 years ago or wasn't it?" since he had told us not 10 minutes beforehand that it was not on the first MRI. At that point his answer indicated that he had NOT EVEN VIEWED the first MRI images, as he answered me by saying he "could not recall". I still am not clear whether the cyst was there 3 years ago or not, therefore the question of whether this cyst s growing rapidly or slowly is also unanswered.
After a brief physical exam Dr. L told us he would refer us to a neurosurgeon, however I advised him that we already had an appointment booked with Dr. T in January. He then suggested we look into MEDEK therapy with Esther Fink, something he suggested to me over 2 years ago, but doesn't seem to know that Ms. Fink is not even accredited by the doctor who developed the therapy! He also recommended horseback therapy...I am sure he was trying to be helpful but after a frustrating 20 minutes of unanswered questions it was like a slap in the face to be told that "the hypotonic kids" seem to respond to animals. I may not be a neurologist but I am an educated person, and I didn't travel all the way to a world-class hospital to be told by a specialist to get my son involved with horses.
At this point I was so upset that I decided not to ask any further questions and to simply wait until our neurosurgery appointment with Dr. T in January. However since leaving there yesterday I became increasingly upset by our experience yesterday, prompting me to write to you today.
I am sure Dr.L is a skilled and knowledgeable neurologist, but unfortunately his ability to impart that knowledge to the parents of his patients seems greatly impaired. We left our appointment with him extremely frustrated and did not feel that our questions were answered adequately. I don't feel my expectations going into this appointment were unreasonable; I did not expect Dr.L to provide definitive explanations for my son's disabilities, but I did expect a yes or no answer to the question of whether the cyst was there 3 years ago or not an whether this growth would be considered rapid or slow and what the difference would be in regards to how the cyst was treated. Our pediatrician sent this referral marked "urgent" yet Dr. L did not feel there was anything urgent about this, but didn't explain why. I also expected Dr. L to be prepared to meet with us, and I don't feel that he was. We did a lot of preparation in advance to ensure we utilized his time wisely and I don't feel the same consideration has been paid to us. His disorganization and contradictory statements does not inspire the greatest of confidence.
I am not sure how realistic it is to request to be seen by another neurologist at this point. I am hopeful that you may be able to review the images from both of Joey's MRIs and if you are able to agree with Dr. L that there is absolutely nothing urgent about Joey's cyst, that it is growing slowly, is not causing pressure to his brain and is not a factor in Joey's symptoms then I will gladly wait until January to meet with Dr. T.
Respectfully,
Pamela L
Friday, November 20, 2009
Off to See the Neuro Tomorrow
Quick update - there was a cancellation at Sick Kids for tomorrow and they called to offer us the appointment, which of course we accepted. Luckily I told our local hospital that I needed the CD with Joey's previous MRI and brain ultrasound images urgently and it was ready and picked up by Jason on Friday, so we are prepared. I'm just putting together my list of questions now so we use our time wisely when meeting with the neurologist.
Here are some random pictures of the kids:
Jason and Ben when we were in Niagara Falls...don't the look alike?
I absolutely LOVE this picture. That's totally his Daddy's expression.
Whoops! I took apart this gate to wash it and didn't put it together properly. Joey quickly realized my mistake and let the cats through before attempting to escape himself!
Here are some random pictures of the kids:
Jason and Ben when we were in Niagara Falls...don't the look alike?
Ben posing by the window in our Niagara hotel room
I absolutely LOVE this picture. That's totally his Daddy's expression.
Whoops! I took apart this gate to wash it and didn't put it together properly. Joey quickly realized my mistake and let the cats through before attempting to escape himself!
Ben at 2 months, getting bigger by the day!
A ridiculously huge grin!
A ridiculously huge grin!
- P, J, J & B
Wednesday, November 18, 2009
Mission Accomplished
Joey has an appointment with a neurologist on Monday November 30, how's that for action?!
It's with the very first neuro we saw when Joey was a baby and it will be at Sick Kids Hospital. We are to bring all of his images with us on a CD...his first MRI, EEG and head ultrasound...for comparison purposes.
We still have the appointment with the neurosurgeon on January 8th, but depending on the results of the appointment on the 30th that may get bumped up.
Now, to get the images on CD in time for the appointment, that's my next mission!
- P, J, J & B
It's with the very first neuro we saw when Joey was a baby and it will be at Sick Kids Hospital. We are to bring all of his images with us on a CD...his first MRI, EEG and head ultrasound...for comparison purposes.
We still have the appointment with the neurosurgeon on January 8th, but depending on the results of the appointment on the 30th that may get bumped up.
Now, to get the images on CD in time for the appointment, that's my next mission!
- P, J, J & B
Tuesday, November 17, 2009
Neurosurgeon Appointment is Booked
As I was told to do last week, I called the neurology department on Monday to find out when an appointment was booked for Joey. A very kind lady looked him up on the computer and told me that the neurologist attempted to triage his referral on Friday but was missing some information, which was received later in the day from the pediatrician but now it has to be re-triaged and this wouldn't be done until Friday of this week. I asked what information was missing and she told me it was the MRI results. Ummmmmm, you mean the MRI that was conducted AT Sick Kids?!?! I was in disbelief, this was turning into another comedy of errors.
I immediately called the "Patient Representative" department of the hospital. Let me just say this...if you are ever dissatisfied with anything that happens in a hospital the first thing to do is contact the hospital ombudsman, or patient advocate/representative department. The very kind lady who took my call got things done, and quickly. She managed to find out that we had been booked to see a neurosurgeon on January 8th, and told me that I would be receiving a call tomorrow morning from the neurosurgery/neurology clinic supervisor to discuss what was happening with a referral to a neurologist. We still need to see/talk to a neurologist prior to January 8th as we have a million questions about the MRI findings and no one to explain it to us.
I was satisfied with all of this for now, and then to my surprise I received a call on my cell phone at 5:30pm from the Chief of Pediatric Neurology. After just having read her biography and list of awards and achievements on the Sick Kids website I felt honoured that she actually took the time to call me herself, almost like I was getting a call from the Queen or something! She spent a good 20 minutes on the phone with me...her initial assessment based only on the MRI report in front of her and nothing else was that an arachnoid cyst like Joey's are somewhat common, they are very conservative about treatment and likely would just watch it closely for growth or change with the support of a neurosurgeon. She also said the changes to his white matter were very non-specific. I asked her if it would make a difference if there was no evidence of this cyst or white matter changes on his MRI at 7 months of age and she was confused, since this report specifically says there is no past MRI for comparison. I advised her that there was, in fact, another MRI done at RVH in Barrie and that the report from that MRI was completely normal. Add this to the comedy of errors! She did say that changes things quite a bit, that it would indicate obvious growth over the past 3 years and that is when they consider surgery. She said that while it is routine to the neurosurgeon (burr a small hole in the skull, drain, close) it is major surgery for a child.
The bottom line is that she was unaware we didn't have a neurologist and agreed that we needed to meet with someone ASAP. She said she was going to leave a message for her assistant to deal with this first thing in the morning and get us an appointment with the very first neuro we met with when Joey was 6 weeks old, since that would be a "follow up" appointment rather than a "new patient consult", the latter taking much longer to schedule. She assured us it would be a matter of days or weeks before we could see him, not months, and certainly before the neurosurgeon consult in January. She is going to ask that a copy of the MRI from 3 years ago be sent to this neuro's attention so that he can compare the images from both to get an accurate picture of what is going on.
So now it's time to compile my list of questions to ask the neurologist, and I do have many! I hope he books off a substantial amount of time for our appointment :)
- P, J, J & B
I immediately called the "Patient Representative" department of the hospital. Let me just say this...if you are ever dissatisfied with anything that happens in a hospital the first thing to do is contact the hospital ombudsman, or patient advocate/representative department. The very kind lady who took my call got things done, and quickly. She managed to find out that we had been booked to see a neurosurgeon on January 8th, and told me that I would be receiving a call tomorrow morning from the neurosurgery/neurology clinic supervisor to discuss what was happening with a referral to a neurologist. We still need to see/talk to a neurologist prior to January 8th as we have a million questions about the MRI findings and no one to explain it to us.
I was satisfied with all of this for now, and then to my surprise I received a call on my cell phone at 5:30pm from the Chief of Pediatric Neurology. After just having read her biography and list of awards and achievements on the Sick Kids website I felt honoured that she actually took the time to call me herself, almost like I was getting a call from the Queen or something! She spent a good 20 minutes on the phone with me...her initial assessment based only on the MRI report in front of her and nothing else was that an arachnoid cyst like Joey's are somewhat common, they are very conservative about treatment and likely would just watch it closely for growth or change with the support of a neurosurgeon. She also said the changes to his white matter were very non-specific. I asked her if it would make a difference if there was no evidence of this cyst or white matter changes on his MRI at 7 months of age and she was confused, since this report specifically says there is no past MRI for comparison. I advised her that there was, in fact, another MRI done at RVH in Barrie and that the report from that MRI was completely normal. Add this to the comedy of errors! She did say that changes things quite a bit, that it would indicate obvious growth over the past 3 years and that is when they consider surgery. She said that while it is routine to the neurosurgeon (burr a small hole in the skull, drain, close) it is major surgery for a child.
The bottom line is that she was unaware we didn't have a neurologist and agreed that we needed to meet with someone ASAP. She said she was going to leave a message for her assistant to deal with this first thing in the morning and get us an appointment with the very first neuro we met with when Joey was 6 weeks old, since that would be a "follow up" appointment rather than a "new patient consult", the latter taking much longer to schedule. She assured us it would be a matter of days or weeks before we could see him, not months, and certainly before the neurosurgeon consult in January. She is going to ask that a copy of the MRI from 3 years ago be sent to this neuro's attention so that he can compare the images from both to get an accurate picture of what is going on.
So now it's time to compile my list of questions to ask the neurologist, and I do have many! I hope he books off a substantial amount of time for our appointment :)
- P, J, J & B
Wednesday, November 11, 2009
Google is my Best Friend
Who was I trying to fool? There's no way I could wait 2 weeks to follow up! At 8:30am I was on the phone to Sick Kids Hospital trying to determine when we will be seen. 2 very unfriendly clerical staff later I now know that there is no such thing as an "urgent referral"...in fact, the second receptionist had a snide little chuckle when I told her that Dr. J had sent an urgent referral. She was all too happy to inform me that how urgent a referral is is not up to the referring doctor, or up to me or anyone else, it is at the sole discretion of the neurologist who triages all referrals. This doctor, whose name I am not allowed to know, will be reviewing referrals this Friday. So apparently if I call back on Monday this woman, who obviously has never had the experience of being told that HER child has a cyst in their brain, may be able to tell me when our appointment is. It really should be a prerequisite for ALL staff at a children's hospital to have a bit of compassion and understanding.
Aside from all of that I have of course done a whole lot of Googling, and have also managed to get a copy of the actual MRI report (Sick Kids told me 4 weeks to get a copy, luckily Dr. J and our own family doctor treat us like actual people and provided me with a copy today). According to the report the type of cyst Joey has is an "arachnoid cyst", more common in males, and more common on the left side but Joey's is on the right. It also states there is some "increased FLAIR signal in the parietal white matter". I'm not exactly sure what this means in layman's terms but it seems to mean abnormal electrical activity in the brain? The myelination is consistent with his age, which is ironic since this was the only abnormal finding in his first MRI and the reason for the repeat exam!
There is a LOT of information out there on arachnoid cysts and it's difficult at this time to apply a lot of it to Joey specifically. In what I've read it would appear suspicious that the cyst didn't appear on the first MRI as they are usually present at birth. What is scaring me the most right now is a possible rupture if Joey sustains a fall or blow to the head of some sort. What is making me sad is that it seems highly likely that Joey has been experiencing headaches but of course is unable to communicate to us when something hurts. The idea that my baby could be experiencing pain and he can't tell me so therefore I can't try to fix it is something NO parent or child should ever have to experience.
We are seeing our family doctor on Monday so hopefully she can help me interpret this report a little bit.
- P, J, J & B
Aside from all of that I have of course done a whole lot of Googling, and have also managed to get a copy of the actual MRI report (Sick Kids told me 4 weeks to get a copy, luckily Dr. J and our own family doctor treat us like actual people and provided me with a copy today). According to the report the type of cyst Joey has is an "arachnoid cyst", more common in males, and more common on the left side but Joey's is on the right. It also states there is some "increased FLAIR signal in the parietal white matter". I'm not exactly sure what this means in layman's terms but it seems to mean abnormal electrical activity in the brain? The myelination is consistent with his age, which is ironic since this was the only abnormal finding in his first MRI and the reason for the repeat exam!
There is a LOT of information out there on arachnoid cysts and it's difficult at this time to apply a lot of it to Joey specifically. In what I've read it would appear suspicious that the cyst didn't appear on the first MRI as they are usually present at birth. What is scaring me the most right now is a possible rupture if Joey sustains a fall or blow to the head of some sort. What is making me sad is that it seems highly likely that Joey has been experiencing headaches but of course is unable to communicate to us when something hurts. The idea that my baby could be experiencing pain and he can't tell me so therefore I can't try to fix it is something NO parent or child should ever have to experience.
We are seeing our family doctor on Monday so hopefully she can help me interpret this report a little bit.
- P, J, J & B
Monday, November 9, 2009
The MRI Results
This morning I received a call from Joey's pediatrician, Dr. J, with the results of his MRI...Joey has a fluid-filled cyst measuring approximately 3cm x 2cm, the fluid is cerebrospinal fluid (CSF). It is located in the right middle cranial fossa, which is over the right ear in the temporal lobe.
Ummmm, yeah. She really couldn't tell us much more, since neurology is not her specialty, and currently we do not have a neurologist since they all decided that they had done everything they could in regards to investigations. Obviously not! Apparently the only people who thought a repeat MRI was necessary were Joey's parents and this pediatrician, and obviously we were on to something.
What Dr. J could tell us was that the cyst is relatively large, and is likely contributing to his symptoms (low muscle tone, lack of speech, cognitive delay etc.) but that it would be unrealistic to think that once the cyst has been dealt with Joey will turn into a "normal" little boy. She did say that this is a big indicator that Joey's brain did not develop correctly in utero, likey in the first trimester. She could not say why this wasn't found on the first MRI at 7 months or what that could mean, and she could not tell us for sure what the best course of action will be. What she did say that there are a few treatment options in the case of a cyst that is obviously symptomatic...it can be left alone and monitored regularly for growth, a shunt could be placed in the cyst to drain it to another part of the body where the fluid will be absorbed or we could be looking at a craniotomy to remove the cyst. It all sounds pretty scary to me.
So an "urgent" referral has been made to both a neurologist and a neurosurgeon at the Hospital for Sick Kids in Toronto. Funny enough, when we left there 2 weeks ago after the MRI we were sure that we'd seen the last of that place for a while, and now it looks like we'll be spending more time there than ever.
We will update again once we know more.
- P, J & J
Ummmm, yeah. She really couldn't tell us much more, since neurology is not her specialty, and currently we do not have a neurologist since they all decided that they had done everything they could in regards to investigations. Obviously not! Apparently the only people who thought a repeat MRI was necessary were Joey's parents and this pediatrician, and obviously we were on to something.
What Dr. J could tell us was that the cyst is relatively large, and is likely contributing to his symptoms (low muscle tone, lack of speech, cognitive delay etc.) but that it would be unrealistic to think that once the cyst has been dealt with Joey will turn into a "normal" little boy. She did say that this is a big indicator that Joey's brain did not develop correctly in utero, likey in the first trimester. She could not say why this wasn't found on the first MRI at 7 months or what that could mean, and she could not tell us for sure what the best course of action will be. What she did say that there are a few treatment options in the case of a cyst that is obviously symptomatic...it can be left alone and monitored regularly for growth, a shunt could be placed in the cyst to drain it to another part of the body where the fluid will be absorbed or we could be looking at a craniotomy to remove the cyst. It all sounds pretty scary to me.
So an "urgent" referral has been made to both a neurologist and a neurosurgeon at the Hospital for Sick Kids in Toronto. Funny enough, when we left there 2 weeks ago after the MRI we were sure that we'd seen the last of that place for a while, and now it looks like we'll be spending more time there than ever.
We will update again once we know more.
- P, J & J
Saturday, October 24, 2009
Joey's MRI and Ben's First Smile
Thursday we took Joey to Sick Kids in Toronto for an MRI, a follow up to the one he had at 7 months of age. This one required general anaesthetic which is always a little bit scary. He seemed to do fine with it though, despite his cold. We were in at 9am and on the road home at 12:30pm,not bad! The results should be in in about 2 weeks. Here's the little guy in his hospital gown waiting patiently for his turn:
Ben surprised us with his first smiles on the early side, only 4.5 weeks! This was the first one we captured with the camera at about 6 weeks:
So more pictures of the ever-changing Ben:
Ben surprised us with his first smiles on the early side, only 4.5 weeks! This was the first one we captured with the camera at about 6 weeks:
So more pictures of the ever-changing Ben:
- P, J & J
Monday, October 19, 2009
Another New Walker, Some Cruising and a Healthy Chunky Baby!
Yet another new walker! This was brought last Friday as an experiment, just to see how close Joey was to reaching this level of walker, not really expecting much at all. Well, he surprised us all, check it out:
- P, J & J
I think we've reached the end of the line with walkers, which is great news! Not to say Joey doesn't need one anymore, but I just mean that there really isn't another one for him to "graduate" to after this. We've gone from a very supportive walker to one with almost no support at all. The "walking wings" that we're using around Joey's chest almost like a leash is more for safety than anything else. We started off without using them and Joey was just fine, but as he learns how to use it he is prone to moving a bit too quickly and falling so we use them as a way to catch him. He looks pretty happy with himself!
Another new development is that Joey has begun to "cruise" furniture. For those not familiar with what that means it's the stage in learning to walk when a kid uses furniture to hang on to for support while moving from one spot to the next. So far he's only done it in one place but as we've learned with Joey that's how it all begins!
On Thanksgiving we went to Papa Roy's daughter Julie's house for some turkey yumminess. There Joey was met with not one, not two but THREE dogs! Joey has never really shown a fondness for dogs....okay, he's basically cried every time he's around one, and we really don't want him to grow up with a fear of dogs so this was a great opportunity. Two of the best behaved Jack Russell terriers I've ever met were quite interested in him, and after about 10 minutes Joey warmed up to them. Here's a picture of Joey trying to share his truck with Abby:
And on to my sweet little Ben. Or my sweet giant Ben I should say. At his check-up today he weighed in at a whopping 10 lbs 5 oz, an entire 2 lbs heavier than 2 weeks ago! He is in the 75th percentile for both head circumference and weight, 50th for height. Having always had feeding issues with Joey this is a delight for us. He's just over a month old now and still an incredibly easy-going baby. He loves to be held and carried, and if neither is possible he adores his swing:
And now just some general cuteness of both my boys:
- P, J & J
Sunday, October 4, 2009
Joey Runs Away from Home
Okay, well maybe he didn't "run" but "Joey Butt-Scoots Away from Home" didn't have the same ring to it.
The playmat you see in the foreground with the polka dots on it has been Joey's safety zone for well over a year. We would take it everywhere and he would pretty much stay right on the mat and rarely stray. If he did go off the mat it was usually to retrieve a toy and he'd scoot right back onto it.
So yesterday Jason was cleaning out the garage and he had Joey set up to play out there. All of a sudden the door to the house opens and Jason yells "come look! he's running away from home!" and sure enough there is my child halfway down the driveway! I thought maybe it was a fluke but he did it over and over again each time we brought him back to the mat. He's certainly gaining confidence!
This was the second video I took. The first one is dizzying to watch because the camera is shaking with my laughter. I wonder what the person in the car that drove by must have thought!
Joey is definitely settling into his role of big brother. He is now more interested in Ben and is surprisingly gentle with him.
Ben is a little chunk. He was weighed again on Thursday and is now 8 lbs 5 oz! He eats ALL.THE.TIME. This is new territory for us, a child who enjoys eating, asks to eat, finishes what we give him to eat etc. What a treat! He's already out of newborn diapers and into size one! Just look how his face has filled out:
Week one home with both boys went much better than expected, though I do have to give a shout out to Gramma Phyllis, who took Joey to preschool on Tuesday and Thursday and also took him all morning on Wednesday. It made getting errands done much easier with just one child. And of course Lori, who accompanied us on our shopping trip on Wednesday and treated me like royalty by carrying Ben in the car seat, bringing in my groceries etc. I finally did tell her that I was feeling great now and had no problems lifting/carrying, but she insisted :)
- P, J & J
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