Nostalgia is Fun

Can you tell which one is which? (Hint: one is Alex and one is Troy, around the same age..)

So Troy isn't Left Out....

Here's a comparison of Troy one year ago:

September 2010:

September 2011:

Alex Has Come So FAR!

A couple weeks ago Alex went to give his dad a high-five, and OPENED HIS LEFTY FINGERS FIRST!!!! This is seriously amazing stuff! The therapists all wanted to see this happen within the first 6 months of his stroke, so to see it happen a full year afterward is just unbelievable! When we told the OT the other day she really pointed out how big a deal that this is - it usually doesn't happen.

I find myself comparing to this time last year so often lately and tearing up. I am just so proud of my little man, and so thankful to God for leaving him here with us. We had a dance party at the end of a movie the other day and I took a quick video of him dancing, swinging his arms. I don't want to post it because he's in his pj's but will show you in private one day if you come over, I promise!

September 13, 2010, at the Glenrose Hospital. He is puffy from the medications and his left eye won't look straight:

June 2011, Posing for Mom and the camera...refusing to look at me

(I think there was a squirrel that was more interesting)

And here he is just a few weeks ago, making a face and just finished playing with neighbourhood kids.



New Adventures for Dad

I've often been quite proud of my 'potty-record' with Alex and Troy. I've never had a mishap - you know, peeing in my face or poo smeared everywhere... until today.

I now have a Poo Story.

I gave Alex a bath this morning, then when he was finished, I had my shower and decided to take Troy in with me - he needed to get the breakfast off. :) After we were done, I saw Alex playing with his tools downstairs and decided to let Troy play in his room while I shaved. I also thought he could use some bare-bum time, so left him without a diaper - he'd just peed in the shower, so I figured I was safe.
As I'm wrapping up my shave, I think, "Boy, Troy sure is playing well - not a peep!" WELL...!

I go in, and there it is - POO! And, it stank! Thankfully, there were only 2 piles and he'd only just discovered one when I got in. But, that first fist full went right to the mouth! AAAAAGGGGHHHH!
I quickly grabbed his hand and ran him back to the bathtub. I turned on the water and just started wiping! All I could figure was get as much of that shit out of his mouth as possible! Then I could take care of the rest on his hands, arm, shoulder, legs and bum.
Of course this whole time Alex wants to help. I'm telling him that he should just go play in his room or downstairs, but of course there's nothing more interesting that Poo!
Once I get Troy hosed down and dressed (while being adamant with Alex not to step in the poo), I toss him into his crib so I can get dressed and deal with the poo smears on the floor. Alex then asks me if he can join Troy in the crib, and I think it's a wonderful idea - keeps both kids out of my way! After using the baby wipes to scoop the crap up, I have to find a way to get rid of the stains...
The in-laws have a steam cleaner - I'll be borrowing that tonight! But, in the mean time, I run down to the basement to get that bottle of Club Soda that's been sitting around since our last tequila binge. It does the trick on the 2 smaller stains (yep, I found another one!), but the bigger spot is still noticeably... discolored.

The boys are now both clean and lunched. Troy hasn't puked, so I'm guessing the small amount of poo that he did injest hasn't caused much harm. He's now sleeping, and I think my stomach has settled enough for me to go eat.

Good times!

Seizures

Last week Jason took Alex for his third (or fourth?) EEG and another meeting with the neurologist. While Alex once again did not have one of his episodes during the EEG the neurologist did say that they saw some midline activity, whatever that means. The good news is that while Jason and Doc were talking Alex had one of his dizzies right in front of the Doc's nurse. She confirmed that he has been having seizures and the Doc has put Alex on some anti-seizure meds.

I am so thrilled to report that since day two of only HALF the dose of his new meds Alex has not had any more dizzies!!! So for about 9 days now he has not needed any new bandaids on his head!

Thanks to all of you for your support again, we are still working on his left hand which is at about 5-10% functionality. This is just going to take some time.

Hello New Home!

We moved this week and the house is looking better and better (especially when I close my eyes!) Thank you to all of you who pitched in, I think this was the most time pressured move we've ever had and I'm not likely to repeat it!!!

March - and another new chapter

At the end of this month we will be moving back to Sherwood Park. I know, Jason said he never would, but we have been thinking about where Alex will be going to school and we believe that the supports just may be better there, so off we go. And they REMOVE the snow there! For all you Edmontonians, you realize how valuable this is, and for all you who have attempted to visit us this winter you realize just how much more amazing it will be for us to live somewhere where visitors will be able to park!

Alex started a new therapy with an organization funded by Alberta Learning back in early February, the woman comes four days a week for 3.5 hours and works one on one with Alex. She even picks him up and takes him to preschool and swimming lessons, following him while he plays and interacts with the other kids, enacting the prescribed actions that the therapists have advised. I asked her about what the other kids think and she said that they just accept that she's there and haven't bugged Alex about it at all; it makes me really grateful that Alex is so young.

We are noticing some improvement with his left hand! He is able to very lightly grab onto something if you place it in his hand and then let it go on command, we are extremely excited about it!

Troy has started crawling and is picking up speed and has also begun to 'furniture walk'. He has also discovered the joys of toilet paper and the mysterious 'water bowl' in the bathroom that he can now reach and splash (yuck!). Needless to say we keep the bathroom door closed now!

Thanks, and Good-bye

Yesterday was our last session at the Glenrose Rehabilitation Hospital. I quite honestly, don't know where we - as a family - would be without the help of Ryan, Sarah and Kristen, and all the support staff. They have been such an encouragement to Alex and to Jenn & I. I have never really been a huge fan of "traditional medicine" but these people have been such a HUGE blessing in our life. I would not trade the last 5 months there for anything in the world. If any of you guys read this, you have made a world of difference - you have picked the best time in history to be in your field, if only to improve the life of one family.

I hope to see you all again. I want you guys to witness the path you've put Alex on, as he continues to improve, recover, and become the Little Man he is meant to be. Without you guys, none of it could be possible!

Playschool

This week Alex has taken another step in growing up - he has officially started playschool. Since these only run once per week we have enrolled him in two classes, once on Tuesday and once on Thursday for the next 8 weeks. He absolutely loves it! Apparently the conversation on the way to school on Tuesday went something like this:

Jason: "today is your first day of new school"
Alex: "is this school with other kids?"
Jason: "yes"
Alex: "are you going to stay or are you going to go?"
Jason: "would you like me to stay or should I go?"
Alex: "you can go"

But apparently Alex was the first to GO! He was into absolutely everything before J had time to finish the paperwork: jumping in the squares on the floor, play-doh, etc etc.

The Thursday program introduces the kids to science, all sorts of kid-friendly experiments (not sure who thought this one up, they're only three!) that they get to bring home later (eek?!?)

I went back to work last Monday and while I don't really miss the daily routine too much I sure am sad that I'm missing the first days of real school. Good thing Jason is there to record these moments!

"Sieze the fat one!"

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!

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!

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:

Being a Dad, Learning from his 3yr old

I've got to say, these past couple of months have been.... well, they've been hard, and interesting and exciting, and painful, and draining. I've got to say, I've struggled a lot with how everything is going. I have allowed my heart to get quite calloused toward the medical profession - every time a doctor calls and wants an appointment with Alex, I get upset. I assume that because what he had is so rare, they all want a piece of the action - want Alex as their little pet project. As much as I am a proponent of research and development, it really sucks when it's your own son that has to be the guinee pig.

But, Alex is such an amazing teacher! This kid takes everything in stride. He knows that things are wrong with his body, but he's got the best mind-set of anyone! Just the other day while we were driving home he says to me, "When my leg gets better, I'm going to run all the way to the big fish!" He's refering to the Sea Life Caverns at WEM - about a 1/2hr drive from our house. But, I bet he'll run it in less than 10 minutes!
Seeing how much he improves every day is a testament to his desire to fully recover. The rehab specialists all said when Alex first started, "Recovery will be up to him - it all depends on how willing he is to do the excersises." Holy crap, is he willing! Well, he may not be totally willing to do all of the excersises, but he is learning a lot about how to will oneself better!

Now, I'm wanting to take away from all of the help this little man has had. I know full well that prayer has had a HUGE part in this. The word miraculous has been mentioned a few times in how fast he's recovering. And, the alternative medicines (homeopathy, magnets, etc) have also been a great benefit. I know that all goodness comes from God. But, I believe that we - ourselves - are the greatest thing we have.
When God made everything on Earth, He said it was good; but, when He made people, He said it was GREAT! He made us to be like Him, and this is what Alex is learning. He's learning to be GREAT! He's learning that life is not just what we see around us, but it is what we want it to be. When God wanted something formless and void to take shape and be populated, He said, "Let there be light!" And there was. And, when Alex says, "I'm going to run to the big fish!" he will.

I am so blessed to have such a great kid. I hate that this happened to Alex and to us; but, I love that we are still able to learn so much about life. This kid is so focused on what his true intentions are that he is beeting all timelines. It was written that God said, "My people perish for lack of vision," but not this kid! He triumphs because of his clear vision.
I have spent the last 2 months just trying to get by - to make this new life work. I've lost sight of what I want, what I'm called to do. But, the more I look at Alex and see how focused he is on where he needs to be, the more I realize that I need to stop looking at my feet and set my eyes on what's ahead once more.

Alex, the world is a better place because of you, and I am a better man. Bless you, Boy.

Our Dearest Alex:

You have already amazed us with your resilience and spirit, and now with your willingness to heal and accept each challenge head on. Here is a record of your progress so far:

Week One - ending August 8, 2010
This week you came home from the hospital, unable to adjust yourself on the couch. Lifting your head was a chore. You slept much of each day and concentrated on eating and healing. We were so happy that you were home, able to sleep in your own bed and be surrounded by your own things.

Week Two - ending August 15, 2010
You have been able to lift your head more and more each day and are also sitting up for prolonged periods, although you cannot sit unassisted. We are having to lay you down often as your bum gets sore after even 5 minutes sitting up. Travelling anywhere in the van must be done in short stints and we have a folded up blanket on your car seat to help you last a little longer. This week you started therapy at the Glenrose but your sessions were short lived because you developed kidney stones and had to be readmitted to the hospital. Thankfully you recovered quickly and were back at home by the end of the week. You also began to move your arm and leg in tiny, flickers of movement which gave us hope that you would begin using them again someday.

Week Three - ending August 22, 2010
This week you began to really pay attention to your limbs. Up until now it has been as if they were removed, you would only let them hang or wave around. Your teachers are forcing you to lift your left hand with your right hand in an effort to raise your awareness of that left hand and it's working! Your arm is not so limp and is starting to hold itself steady, although we suspect that you may have more movement once the pic line comes out.

You have also begun to help us put on your pants by straightening your left leg when asked, we are starting to see that you just may be walking someday after all!

Alex can play if he sits in his Elmo chair which is cushy for his bum. You can see the pic line on his left arm, the line itself is small but the tubing is long and needs to be tied up to keep it out of the way

Week Four - ending August 29, 2010
This week you walked for the first time! You aren't steady enough to hold yourself upright when standing but you are able to force that left leg of yours to take steps forward and we are all so excited! Your arm also moves just a bit when you want it to (mostly shoulder movement, your elbow stays bent and your hand does little or nothing). On Saturday the 28th your IV meds finished and we are looking forward to having that pic line removed so that we can see you start working your left arm, and go swimming!

They make him play on his knees to strengthen them

Week Five - ending September 5, 2010
On Tuesday morning you got your pic line removed without any issues and we were told that you could go swimming starting on Saturday, so we continued with the 'dry' school for the week. You have started to crawl on your knees but this doesn't last long since your knees have lost their previous callouses. But mommy has been crawling around with you and things are getting better. You also got out of bed for the first time this week all by yourself! Mommy was too lazy to come get you out of bed so she told you to get out all by yourself and you did! You even came all the way down the hall to mommy's room and found her!

You have been so antsy this week, it's good to see that you are tired of sitting still. We've had your teachers show you how to get off the couch all by yourself although you can't get back up yet. You're also all over the floor, playing and scootching wherever you want to be. On Saturday you got to have your first bath and loved it, requesting another one about 20 minutes after the first one ended.

Week Six - Ending September 12
Wet Wet Wet! There is a pool at the Glenrose and you went swimming almost every day for school, reaquainting yourself with the water. After so many weeks not moving and then a bunch more with only one side of your body working you have had many difficulties with balance but in the water it almost seems that all things are nearly equal and you are back to your old 'swim like a fish' self. Oops...I mean, 'swim like a dolphin/seal/sea lion'.

He is holding the pail with his left hand and filling it with toys using his right hand.

Your walking is improving more and more, you even do this little hop/skip thing when you're excited. You still need to hold onto us to walk but your legs are getting stronger and stronger everyday, and you are more willing to crawl on your knees too. On Thursday Daddy takes you to the orthopedist who makes a cast of your leg and lets you pick out a zoo animal pattern for your new leg brace. This will help you walk further and longer since your ankle will get tired of walking long before your knee and hip are finished.

On Wednesday we went swimming for Mommy's birthday and you astonished us by going down a waterslide by yourself (Mommy caught you at the bottom before you drowned) and walking up the stairs by alternating your feet!!!

Week Seven (has it been 7 weeks already?) - ending September 19
This week has already seen so much progress and it's not even finished:

• You have stood without holding onto something for a millisecond and you keep doing it
• You have gone down the stairs by yourself, scootching your bum along
• You are much more willing to travel from the front door to the living room by yourself, crawling or scootching
• You can get back up onto the couch now
• You are furniture walking
• Your left arm can be raised up into the air and you can even aim your hand for a high five with somewhat decent accuracy!

We are so proud of you and we see that you are loving life and playing, getting the most out of what you can do. You are also not satisfied with sitting still and are so proud of your accomplishments, as you should be!