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...

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.

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!

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.

What was meant for bad....

Seeing Alex's recovery progress so fast is truly amazing. There are feelings of love and joy - I am so proud at how well he takes everything - that I doubt I ever would have experienced. If I had the choice, I'd never want Alex to go through all that shit we've seen this summer - it was aweful! However, it was out of that horrendous experience that we are seeing our Miracle walk and laugh in a new light.

Alex has always been the greatest joy of my life; but, seeing him so excited about conquering this stroke is more than I can bear. Every time he laughs for joy when he takes a step, and now runs, it brings a tear to my eye. I am watching a show (Rescue Me) that often asks, "Where is God in all this?!" I can tell you that, though my faith was never really rocked this summer, I often asked, "God, where are you? Why Alex? Why now?"
Well, this fall I am hearing and seeing His answer. I know that God is using this period of healing for Alex to not only display His love by speeding Alex's recovery, but He's also doing a work in my heart. He's teaching me about the Father's Heart; He's teaching me about overcoming; He's teaching me the power of will.

God is showing that even that what is meant to harm and destroy can be turned around to create joy and life!

Eyes and Feet

Alex has started walking ALL BY HIMSELF! His first 'alone' steps were Thursday September 23. Here is the video to show you:

On September 13th we took Alex to see his opthalmologist who assessed Alex's vision. The good news is that both of his eyes can see normally. The bad news is that the nerve that controls his left eye's straight-to-left movement is not working, resulting in his left eye looking like a lazy eye.

To remedy this we have to put a patch over his right eye, forcing the left to try to work. Doc says that most of the time the nerve can recover but if he hasn't seen any improvement by the Dec 14th appointment then Alex will need surgery to make his eye straight. The surgery will force his eye straight but it won't ever look around normally, so here's praying for nerve recovery!!!

We call the patches 'pirate patches' and Alex doesn't like them much but is generally a good sport about it. We have since found smaller patches, this one is adult sized: