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!
Wednesday, September 29, 2010
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:
Thursday, September 16, 2010
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.
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.
Tuesday, September 14, 2010
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!
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!
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'.
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:
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!
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