Sunday, August 21, 2011
A Great Example
One question we often get relates to Ethan's quality of life. Although things are not easy, I think it sounds a whole lot worse than it is to live (okay, so some times it is really overwhelming I admit...but you get the point I think). The following video was shared with me, and I think Can do (although not human) best illustrates how quality of life is very subjective. http://www.dogwork.com/kan6/
Wednesday, August 17, 2011
Something Neat From our Busy Day
To end off our busy day, I'd received a pretty neat link from my mom. I had intended to include it in the last post...but I would say it is likely good enough to stand on its own. I really enjoyed this song, and thought I would share it. If you have never heard of this band before, I highly recommend listening to and watching the video before reading the information posted below. Enjoy! http://everyaustraliancounts.com.au/rudely-interrupted-gets-behind-the-ndis/
Tuesday, August 16, 2011
Crazy Day of Appointments...
The Tuesday after the long weekend was a busy one for Ethan and I. We left the house at 8:30 am to have his existing stroller tray adjusted, then off to get his new set of wheels. Since it was his first time getting them, everything had to be adjusted and the appointment took almost 3 hours. After a quick stop at Clayton's work (near the hospital) to drop off a custom seat, we went to his neurosurgery appointment.
The results of the MRI were in...the good news is that the Dandy-Walker cyst is now fully communicating. When he required the emergency surgery the cyst had split into several chambers which is likely why there was such a build up of fluid. Those chambers are all gone now (the surgery was a success). During the surgery the surgeon had opened everything to flow towards the shunt. The MRI also showed that Ethan's ventricles and shunt are doing well. :) Now for the other cyst - which the surgeon and I have dubbed 'Cysty' because it is not part of the Dandy-Walker nor is there any other condition name that it fits under. So Cysty was larger in this MRI than it was in April (post surgery) but smaller than it was when it was first detected about a year ago?! I was told it could be that the size of the cyst changes, but we would not know if it is a daily thing or an over time kind of thing, but obviously it has changed. At this point we are going to wait and do imaging again in 6 months time. The surgeon said it is MAJOR surgery to try and remove a cyst in front of the brain stem with several risks...so the best course is if we do not have to do anything.
Then off we went to get Lorelei from her before/after school summer program. I unloaded Ethan from the car into his new wheels and pulled the canopy over his head to protect him from the rain (not a lot of him was exposed). On our way in to get Lorelei some little kid yells to another boy in the play yard (keep in mind these children are 6 years old or younger), "Hey Ethan, look at this weird looking baby!" I could not believe my ears. This from someone so young. I had no idea how to respond. I was shocked! I've noticed such negative behaviour from adults and kind of expect it from older kids but never from one so young. I don't think I'm ready to deal with that just yet. I heard the teacher say she was going to go deal with it as I was entering the school. In case he heard and understood, I leaned down to Ethan and told him I had no idea what the kid was talking about, he's no weirder looking than any other kid.
By the time we got out, the teacher said she did not know if I'd heard what was said (I told her I did and asked, "How does one respond to that?") but she wanted the little boy to apologize. She said she'd told him that, "Maybe he was born like that. Maybe his legs don't work very well. You might have hurt his or his mommy's feelings." I'm not sure if he told her it was that Ethan wasn't walking that he found weird or if she was just guessing at what might have prompted his comment. For all I know he could have thought that Ethan was the biggest baby he'd ever seen in a stroller. She told him how Ethan is Lorelei's little brother. He seemed bothered by what he'd done but did not out right apologize. She again suggested he ask questions as I would likely answer them...and I said to him, "How about you just say HI Ethan, I think that would be nice." With that obligation met, he was there a little for me to say that Ethan spends a lot of time in hospital but is otherwise like most kids and went off to play. The rest of the play yard had all gathered around the chain link fence and all were saying hi (and eventually bye) to Ethan some in anticipation of him responding. I told them that he doesn't speak, but that his smiles said he was happy to see them. They seemed very curious about him. This is more the behaviour I have come to expect from children. The innocent questions, curiosity and genuine interest in talking to him (sometimes touching as well). I figure it was a learned behaviour that made the boy make the comment to begin with...he is the only child in the class I noticed with glasses and one of only about a handful who is not Caucasian. I hope it wasn't anything said to him as I'm sure it hurts, but maybe something he'd heard said of others. That still sucks but maybe now he can teach them compassion too...
The results of the MRI were in...the good news is that the Dandy-Walker cyst is now fully communicating. When he required the emergency surgery the cyst had split into several chambers which is likely why there was such a build up of fluid. Those chambers are all gone now (the surgery was a success). During the surgery the surgeon had opened everything to flow towards the shunt. The MRI also showed that Ethan's ventricles and shunt are doing well. :) Now for the other cyst - which the surgeon and I have dubbed 'Cysty' because it is not part of the Dandy-Walker nor is there any other condition name that it fits under. So Cysty was larger in this MRI than it was in April (post surgery) but smaller than it was when it was first detected about a year ago?! I was told it could be that the size of the cyst changes, but we would not know if it is a daily thing or an over time kind of thing, but obviously it has changed. At this point we are going to wait and do imaging again in 6 months time. The surgeon said it is MAJOR surgery to try and remove a cyst in front of the brain stem with several risks...so the best course is if we do not have to do anything.
Then off we went to get Lorelei from her before/after school summer program. I unloaded Ethan from the car into his new wheels and pulled the canopy over his head to protect him from the rain (not a lot of him was exposed). On our way in to get Lorelei some little kid yells to another boy in the play yard (keep in mind these children are 6 years old or younger), "Hey Ethan, look at this weird looking baby!" I could not believe my ears. This from someone so young. I had no idea how to respond. I was shocked! I've noticed such negative behaviour from adults and kind of expect it from older kids but never from one so young. I don't think I'm ready to deal with that just yet. I heard the teacher say she was going to go deal with it as I was entering the school. In case he heard and understood, I leaned down to Ethan and told him I had no idea what the kid was talking about, he's no weirder looking than any other kid.
By the time we got out, the teacher said she did not know if I'd heard what was said (I told her I did and asked, "How does one respond to that?") but she wanted the little boy to apologize. She said she'd told him that, "Maybe he was born like that. Maybe his legs don't work very well. You might have hurt his or his mommy's feelings." I'm not sure if he told her it was that Ethan wasn't walking that he found weird or if she was just guessing at what might have prompted his comment. For all I know he could have thought that Ethan was the biggest baby he'd ever seen in a stroller. She told him how Ethan is Lorelei's little brother. He seemed bothered by what he'd done but did not out right apologize. She again suggested he ask questions as I would likely answer them...and I said to him, "How about you just say HI Ethan, I think that would be nice." With that obligation met, he was there a little for me to say that Ethan spends a lot of time in hospital but is otherwise like most kids and went off to play. The rest of the play yard had all gathered around the chain link fence and all were saying hi (and eventually bye) to Ethan some in anticipation of him responding. I told them that he doesn't speak, but that his smiles said he was happy to see them. They seemed very curious about him. This is more the behaviour I have come to expect from children. The innocent questions, curiosity and genuine interest in talking to him (sometimes touching as well). I figure it was a learned behaviour that made the boy make the comment to begin with...he is the only child in the class I noticed with glasses and one of only about a handful who is not Caucasian. I hope it wasn't anything said to him as I'm sure it hurts, but maybe something he'd heard said of others. That still sucks but maybe now he can teach them compassion too...
Monday, August 1, 2011
The End of Some of our Waiting...
July was a good month for us! :) We went the full month without any admissions to hospital (touching wood) and although I'm excited to say that, I also find it kind of sad given we'd spent so much time without an admission before last June. July has been a busy one for Ethan (and by extension us). Because of the lost teeth, Ethan was referred to a periodontist and last week we had our follow up appointment. After consulting with the pathologist who analysed Ethan's first few teeth that fell out, he thinks that the cementum (it is what keeps teeth in) was likely affected by the chemotherapy Ethan had as a baby. Only time will tell if his adult teeth are similarly affected or if it was just the baby teeth. He also did not think Ethan was experiencing any significant bone loss and felt that was not a worry.
Meanwhile, Ethan had a bone density scan last week from which we are still awaiting results. Our orthopedic surgeon is waiting for the results of the scan before proceeding with planning Ethan's next cast. A couple weeks ago we got to meet Ethan's new physiotherapist in our home and she came by with different equipment for him, as he outgrew some of the equipment.
Tomorrow, he gets his new wheels (and seating) and we find out the results of him brain MRI. We'll end the week with an adjustment to his back brace. The orthopedic surgeon has asked me to increase his time in the brace from about 2 hours per day to 8-10 hours per day. We just started putting him in the brace at bedtime to meet this request. Ethan has grown a lot since the brace was made, and in the past month or two has gained some weight so the brace no longer closes properly on the bottom. We're hoping to have a longer strap put on until we know what we're doing regarding casting, etc.
Meanwhile, Ethan had a bone density scan last week from which we are still awaiting results. Our orthopedic surgeon is waiting for the results of the scan before proceeding with planning Ethan's next cast. A couple weeks ago we got to meet Ethan's new physiotherapist in our home and she came by with different equipment for him, as he outgrew some of the equipment.
Tomorrow, he gets his new wheels (and seating) and we find out the results of him brain MRI. We'll end the week with an adjustment to his back brace. The orthopedic surgeon has asked me to increase his time in the brace from about 2 hours per day to 8-10 hours per day. We just started putting him in the brace at bedtime to meet this request. Ethan has grown a lot since the brace was made, and in the past month or two has gained some weight so the brace no longer closes properly on the bottom. We're hoping to have a longer strap put on until we know what we're doing regarding casting, etc.
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