Alex LOVES Disney's "Robin Hood", more specifically, he loves the scene at then end of the archery tourney when the Rhinos try to catch the Chicken. We watch it just about every day and he just howls with laughter! Then he'll run around the house pretending to be the Chicken bowling over the Rhinos. It's awesome!
The last 2 times I watched it with him, I teared up. That part of the movie has come to represent Alex's own victory over what he's had to deal with. No matter what comes his way, he keeps his smile! My son is an overcomer and has a great deal to teach us all!
Sunday, January 2, 2011
Saturday, January 1, 2011
Goodbye 2010!
I must admit - I'm not sad to see 2010 end, yet I am also not bitter about it. Someone asked Jason and I recently how we were dealing with all that happened to Alex without being bitter. Honestly, I don't know. Perhaps it's the 'peace that passes all understanding'; perhaps it is the prayers of others; perhaps it is a bit of redirected angst. For a while there I found it extremely frustrating to drive and try to find parking in the Glenrose's underground parkade, much more frustrating than watching my son try to make his left hand move without success. It just doesn't make sense.
Alex's EEG was inconclusive. Half the symptoms indicate seizures, half indicate muscles spasm, the docs really have no idea. They want to run another EEG and try to figure it out. As for Alex, he has started to be able to feel the 'dizzies' come on and can either fling himself onto the couch, hold onto something to steady himself or, the latest development - he has even managed to remain on his feet throughout the spasm without holding onto anything!
All the while, all throughout, Alex remains himself - inquisitive, loving and happy. Some kids cry and scream when they see the occupational therapist coming, but not Alex. He 'hides' and then pops out and runs to give him a hug! The physical therapists have constantly rearranged their schedules in order to keep Alex as a patient, and he absolutely adores them! He told me the other day that he wants to marry those two girls (didn't have the heart to tell him that they're taken).
I'm aware that some of you who read this are not Christian, or are not religious, while some of you are church friends and share our faith. Whichever the situation I appreciate your support and love and hope that you have been blessed by our story. While we would never choose to relive these past experiences we are also astonished by the highs and lows that have accompanied the journey. I never thought that watching a kid run could bring so much joy!!!
God bless you all and Happy New Year!
Alex's EEG was inconclusive. Half the symptoms indicate seizures, half indicate muscles spasm, the docs really have no idea. They want to run another EEG and try to figure it out. As for Alex, he has started to be able to feel the 'dizzies' come on and can either fling himself onto the couch, hold onto something to steady himself or, the latest development - he has even managed to remain on his feet throughout the spasm without holding onto anything!
All the while, all throughout, Alex remains himself - inquisitive, loving and happy. Some kids cry and scream when they see the occupational therapist coming, but not Alex. He 'hides' and then pops out and runs to give him a hug! The physical therapists have constantly rearranged their schedules in order to keep Alex as a patient, and he absolutely adores them! He told me the other day that he wants to marry those two girls (didn't have the heart to tell him that they're taken).
I'm aware that some of you who read this are not Christian, or are not religious, while some of you are church friends and share our faith. Whichever the situation I appreciate your support and love and hope that you have been blessed by our story. While we would never choose to relive these past experiences we are also astonished by the highs and lows that have accompanied the journey. I never thought that watching a kid run could bring so much joy!!!
God bless you all and Happy New Year!
Thursday, December 9, 2010
Seizure or Spasm?
As some of you may know we had to take Alex in to see the doctor again this week. Last week sometime he began tipping over whenever he stood up. We've since noticed that it happends whenever he's been sitting for a period of time and that his arms and legs seem to seize up. He then falls forward and does not put his hands out to stop himself. When we told the docs and therapists at the Glenrose about this they immediately told us it may be seizures and that we should contact his neurologist. We did so and also took him to see his community pediatrician. Both of them agreed that an EEG should be done (brainwave measurements) immediately and so one was done on Tuesday. We are getting the results on Tuesday coming up.
Another doctor at the Glenrose witnessed one of the 'episodes' today, which last only about 2 or 3 seconds, long enough to cause him to fall over. This doc said that it doesn't quite line up with vertigo but it also doesn't look like seizures, he is wondering if it might be a simple case of muscle spasms due to his recovery. Guess we'll find out Tuesday.
If it's seizures then he will need some meds and careful monitoring. If it's spasms then he doesn't need meds but we need to make sure he doesn't hurt himself when he falls over. And this can make other things dangerous, like going up/down stairs, swimming, etc.
Obviously we're just hoping it will go away and we won't have to do anything. On the up side, Alex tipped over last night here at home after getting out of his high chair and landed on a pile of blankets then said "let's do it again!" Ha! Guess it can't be all that bad...
Another doctor at the Glenrose witnessed one of the 'episodes' today, which last only about 2 or 3 seconds, long enough to cause him to fall over. This doc said that it doesn't quite line up with vertigo but it also doesn't look like seizures, he is wondering if it might be a simple case of muscle spasms due to his recovery. Guess we'll find out Tuesday.
If it's seizures then he will need some meds and careful monitoring. If it's spasms then he doesn't need meds but we need to make sure he doesn't hurt himself when he falls over. And this can make other things dangerous, like going up/down stairs, swimming, etc.
Obviously we're just hoping it will go away and we won't have to do anything. On the up side, Alex tipped over last night here at home after getting out of his high chair and landed on a pile of blankets then said "let's do it again!" Ha! Guess it can't be all that bad...
Thursday, November 18, 2010
Alex on CARL
Today I got a great video of Alex jumping in the automated legs machine which I have dubbed 'CARL' (Cool Automated Robot Legs). Apparently my name is catching on slowly...
In case it's fuzzy, Alex is saying that he is the "Great American Jackelope" from the Pixar short. And you can see the robotic legs in the background, Alex doesn't need the intensive help so the therapists just use the machine to help him jump and run.
Saturday, October 23, 2010
Some School Photos
Thought I'd share some of the therapy pics, Alex is doing so well!
Alex here keeping his balance while walking and kicking the die.
They put his left arm in this sling to remove the effects of gravity, enabling him to target his shoulder muscles. His goal here is to swing his arm and hit the ball the therapist is tossing.
No More Needles!
This past Monday, October 18th, we were able to meet with Alex's pediatric stroke specialist and the rheumatologist. They showed us the pics of his MRA (magnetic resonance angiogram) and gave us his test results. They also agreed that he no longer needs the blood thinner injections, hooray!!!
When Alex was in the hospital this summer the MRA showed that of the four arteries going into his brain, his two carotid arteries (the ones you feel for a pulse at) were completely blocked (see posts below). The most recent MRA showed that his left carotid artery has since opened back up but his right artery is still blocked. Even with this blockage the experts felt it was safe to take him off of the blood thinners and just maintain his progress with low-dose aspirin. There is the possibility that his right artery may never open up. His brain may rebuild the artery with a different route. There's really no way to tell what is going to happen, so we wait and see.
The antiphospholipid antibody results were also quite good. A normal result is below 15, indeterminate is 15-20 and Alex's current level is 19. His level this summer was 58, so things are getting better!
Alex will be getting a more traditional angiogram sometime in the next 3-6 months. They will be sedating him more fully for this procedure, even requiring intubation, so this is a little scarier but he has come bouncing out of the past sedations so well that we know he will be fine! This procedure involves inserting a dye into his arteries then taking x-rays with the MRI machine, which will light up his blood vessels much more clearly for the docs and show them if there are any issues. We are confident that things will continue to progress!
When Alex was in the hospital this summer the MRA showed that of the four arteries going into his brain, his two carotid arteries (the ones you feel for a pulse at) were completely blocked (see posts below). The most recent MRA showed that his left carotid artery has since opened back up but his right artery is still blocked. Even with this blockage the experts felt it was safe to take him off of the blood thinners and just maintain his progress with low-dose aspirin. There is the possibility that his right artery may never open up. His brain may rebuild the artery with a different route. There's really no way to tell what is going to happen, so we wait and see.
The antiphospholipid antibody results were also quite good. A normal result is below 15, indeterminate is 15-20 and Alex's current level is 19. His level this summer was 58, so things are getting better!
Alex will be getting a more traditional angiogram sometime in the next 3-6 months. They will be sedating him more fully for this procedure, even requiring intubation, so this is a little scarier but he has come bouncing out of the past sedations so well that we know he will be fine! This procedure involves inserting a dye into his arteries then taking x-rays with the MRI machine, which will light up his blood vessels much more clearly for the docs and show them if there are any issues. We are confident that things will continue to progress!
Wednesday, October 13, 2010
MRI and Blood Tests Coming up...
This Friday Alex will be sedated and undergo an MRI at the Stollery to determine if there are any remnants of the blood clots that he had this summer. Two weeks ago he had bloodwork drawn to test for the syndrome that caused the clots. On Monday we will be seeing the doctors to hear the results and are hoping and praying that they will declare Alex fully healed. It would be so wonderful to not have to inject him with is needles anymore, even though he is such a trooper about it (doesn't even complain anymore, just watches us do it and then moves on).
A quick update on his therapy: we are now working on fine-tuning Alex's walking so that it is not so jolted and so that he can begin to run soon! His arm's movement is coming much more slowly but this is expected since there is a lot you can do with one arm, he's not very motivated to move the other arm.
Last Friday Alex was the first kid to test run the Glenrose's new MILLION dollar walking machine. He was so patient while they took the 20+ minutes to strap him into the thing, everyone learning as they go. There were eight therapists and the guy from the company that built the machine either helping strap Alex in or watching and taking notes. He is the smallest person that can possibly fit into it. It's technically called some sort of Swedish sounding name, but I've named the machine CARL (Cool Automated Robot Legs). I've got a video and some pics on my phone and as soon as I've figured out a way to get them off my phone and onto my computer I'll post them.
A quick update on his therapy: we are now working on fine-tuning Alex's walking so that it is not so jolted and so that he can begin to run soon! His arm's movement is coming much more slowly but this is expected since there is a lot you can do with one arm, he's not very motivated to move the other arm.
Last Friday Alex was the first kid to test run the Glenrose's new MILLION dollar walking machine. He was so patient while they took the 20+ minutes to strap him into the thing, everyone learning as they go. There were eight therapists and the guy from the company that built the machine either helping strap Alex in or watching and taking notes. He is the smallest person that can possibly fit into it. It's technically called some sort of Swedish sounding name, but I've named the machine CARL (Cool Automated Robot Legs). I've got a video and some pics on my phone and as soon as I've figured out a way to get them off my phone and onto my computer I'll post them.
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