Sunday, June 29, 2008

A new lifesong

About four months ago we received an email from Karalee (a good friend who lives in Sydney) she asked us to pray for her friend who had gone into premature labour. As the week went on, we prayed with Kare and received updates from afar. You can watch the full story on the video listed below.

This past week Karalee sent a link to the song that her friend, Jill, had written and sung on the new Hillsong album. Amazingly, she wrote the song before the whole journey began. Anyhow, I wanted to share it with you because it really touched me and has become my new life song. The song begins after her testimony at 4:36. The video is about 8 minutes long, but it is worth it.

The part of the song that so stands out for me says:

"All of my life,
In every season,
You are still God
I have a reason to sing,
I have a reason to Worship"

Wednesday, June 25, 2008

Phew its over!!!

Well we are back from the appointment at Children's Hospital.

We arrived for our 4:30 appointment, to wait for an hour for the doctor to come and see us. We found out after the fact that she was on call in emergency and had to see a patient in ICU.

Our appointment was short and to the point. The crux of it is that Karter's head growth is still stunted. It has not grown for almost a year. Head growth = brain growth. That is how they measure it. Also, his weight is still low. He has grown two and and half inches since January but remained the same weight...21.5lbs...pretty small for 2. So that is the concern. Not really too bad, but definitely something to look into further.

So the course of action is this. We will take him off Topomax, which is the med he has been on for almost 14 months. We will not replace it with another med but we will up the dosage of the new med that we started about three months back. We have had a lot of success on this new med. We went nearly three montsh without a seizure...that is the longest ever in our journey.

The med that he will come off has a side effect of stunting growth and weight. They wanted to give him a chance to see if his growth would pick up before taking him off this med, but since it hasn't and since it was not really the main one helping to keep his seizures under control, they feel that the benefit far outweighs the risk. It will take about 6 week to totally wean him off of it and move him up on the other med. It is always possible that in the meantime we will see more seizure activity, but that usually happenes while things are balancing out.

The other thing that we will be doing is another MRI in a couple of months. Dr. Connolly really feels that it is worth taking another look at Karter's brain. The fact that his seizure are under control and that his development is still quite slow in progress is of concern to her. She felt that we should have seen faster progress. We do know that there is another area of abnormality in the back left side of his brain. They want to look at the further and discuss if and any other options for further treatments for Karter.

Interestingly enough, Kurt and I went into today saying that we wanted another MRI. And at the last appointment they had eluded at the fact that they may take him off this medication, so we were thrilled with the outcome of today.

I was really anxious about how to emotionally prepare for today. I likened it to this. If you go to the dentist every six months for years and never have a cavity or any major dental work done outside of your routine cleanings, you really have no reason to not like going to the dentist. However, if you went to the dentist every six months and had major work done every time, it tends to leave you feeling like you don't really like going. That is how we feel about going to these appointments. We have not yet had enough 'good cleanings' to say that we like it. So here is one appointment for the good side. And here's to many more. Thanks for covering us in prayer today.

We finished off the evening with dinner out as a family, a walk around Metrotown Mall, with a visit to the Disney store for Paige... it was a nice family night. A great way to end the day!

Monday, June 23, 2008

Need some accountability....

Ok, my plan for this get a video uploaded of Karter's progress. Be patient with me, I will get it done. I just wanted to show you the comparasion on where we have come from and where we are now. I figure if I temp you with it, I will have no choice but to get it done

Anyhow, we have a rather busy week. Wednesday we meet a rep from one of the equipment companies. He will be fitting Karter for a walker and or stander and will be talking about what his needs will be over the next while and he will assess what we will need to get for Karter. As I mentioned to you a few months back, Karter was approved for the 'At home' prgoram. So these pieces of equitpment, that would have cost us $1000's out of pocket, will be paid for my that program. PTL for blessing and favor!

After that appointment we head to Chidlren's for a six month check in. Kristin was asking me the other day how I was feeling about it. Honestly, I hate it! It tends to send me realing for a few days. We have had so many 'bad appointments' when we go there (clinical I suppose I should say), that I have a hard time expecting the best. All the other agencies we work with are focused on what he IS doing rather than what is is NOT. I understand and can appreciate the 'cautious optimism' thing from the doctors, but it can still be tough to hear the things that you know in your head, but choose to look at differently and believe in your heart. So we would covet your prayers for that appointment on Wednesday afternoon.

A great thing for today....when I was doing Karter's physio routine this morning, he was able, while leaning forward, to sit unassisted for a few seconds. I showed my mom a few hours later, and still thigns are coming along. Long way to go, but one step at a time, we will get there.


Sunday, June 22, 2008

A great little story...

Someone sent this to me in an email. I thought it was really sweet, we all make choices everyday that we do not realize can change a persons life forever! Hope you enjoy this, I sure did!

At a fund-raising dinner for a school that serves learning-disabled children, the father of one of the students delivered a speech that would never
be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: 'When not interfered with
by outside influences, everything nature does is done with perfection.. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?'
The audience was stilled by the query.
The father continued.. 'I believe that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.'
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.'
Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. His Father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the stands and both teams started yelling, 'Shay, run to first! Run to first!' Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, 'Run to second, run
to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, 'Shay, Shay, Shay, all the Way Shay'
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third! Shay, run to third!'
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!' Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam
and won the game for his team.
'That day', said the father softly with tears now rolling down his face, 'the boys from both teams helped bring a piece of true love and humanity into this world'.
Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

Saturday, June 7, 2008

As transparent as saran wrap....

I am going to be as candid as I ever have been. I have been juggling with some thoughts the last while and for the first time I am really...well, I guess stumped would be the word. So here goes...

The technological world is really an amazing thing. You basically have anything at your disposal at any time of the day, anywhere. We had a friend playing in Israel a few weeks back, obviously we could not be there, but as he played, we were able to watch the LIVE feed. It really does amaze me. If I have a question, the Internet has an answer, instantly.

A week or so back, Kurt had gone out to play hockey late one night. There was nothing to watch on TV, so I went to the computer. I had just been talking with my sister in law about the Lakeville revival, that is going on in Florida right now. To sum it up, Todd Bently (an Abbotsford local) had gone down there in April for a 5 night healing conference and God broke loose and the services have not stopped. They out grew they church, church parking lot, the 7000 seat local stadium and are now in an air conditioned tent that seats 10, 000. As I sat there that night, I watched a service ( where 1000's were being healed. This night in particular, Todd was having people testify after they had just been healed. He was mainly focusing on those who had arrived in a wheelchair and were leaving on their feet. They would push their wheelchair to the stage and then testify and leave it there! Some had been in chairs for over 9 years. I watched for over an hour, moved to tears, but encouraged.

Brace yourself, I am gonna get fanatical...

You know we have walked out this journey with a firm grasp and stand that God will heal our son. Friends, I claim today 'my son is healed', healing is gradual and does take time. Each night, as I lay Karter to bed, instead of asking God heal my son, I pray for a miracle. A bible story, instantaneous, rise up and walk kind of miracle. One that everyone else in our world seems to believe in and experience, but here in North America, we seem to limit to the days when Jesus walked on this earth.

Ever since that night I have struggled with a few things. Part of me says "Get your son to Florida and claim his miracle" the other part of me says "You don't have $700 to waste on your fanatical hope and crazy whim", then I wrestle with "Is my son not worth to money to even try?". Seriously, I am driving myself crazy :-)!!!

Seriously though, those questions then lead me to this. There is an obvious movement there, God is meeting people in that place, like no other we are seeing in North America. Do we discount that and then say 'He can move just as well here'? If Karter will receive a miraculous intervention, why would I have to fly clear across the country to find it? But then, if God is moving in that way there, why wouldn't I. I mean, do we load all of our sick into a plane and fly them there? I think you get it.

I am bordering on the fanatical here, I know. But I am ok with that. I have walked this journey every step of the way, as beautiful and difficult as it has been, it has brought me to this place. A place that I feel comfortable with and a place that is right for me. It may look strange to others, you may even think "boy she has lost it now", but honestly, I stand today saying I have never believed so much on one thing as I do today. So off my rocker I may be, but better there than I heap of unbelief on the floor.

So for the first time, I am going to ask you for your thoughts...a dangerous thing I know :-) I am even ok if you say "Char, I think you are crazy, get a grip". If you don't want to post one here, you can email me

Thanks for listening to my ramblings...

Monday, June 2, 2008

Praise report!!!!

I cannot believe that I forgot to update... its been a crazy week!

Karter has started to learn to roll. Now, I would not say he is "rolling", cause he is not rolling to get where he wants to go. He does roll over from his back to his tummy at least once a day (and of course back from his tummy to his back - but he will stay there for a bit). So we know he can do it. He does get his leg in the way, he needs to straighten it out so that he does not get frustrated, but he is doing really well!

He started last Monday with one roll. Then on my birthday he rolled twice fully and 90% of the way another time, later in the day. Ever since then he has been rolling to his side a lot, he even slept on his side one nap time. He continues each day to remember how to get completely over, so we are so thankful that he did not just do it and then forget.

His physiotherapist said that she really sees motivation in him - and that's what we want! He really is working hard to get over and to do more things. His sit ups are getting higher and higher everyday. One day I think he will sit right up. I tried to capture a couple in pictures, so you can get a sense of it. They are not the best, but at least you know what I mean now.

I mentioned to Sandy, his physiotherapist, that I am scared to say that we have actually turned a corner, for fear of being disappointed. But I can say this without worry, we have certainly closed the gap between when he is learning new things. I would be lying if I said that things were coming along at a fast pace, they aren't at this point, but we are moving forward much faster than before. So for that, we are so pleased.

We continue each day to claim that his healing is happening before our very eyes. And he gets stronger everyday. Our prayer is that things pick up at an alarming rate. That we start to close the gap that they said could never be closed. We set our sights on things that are far beyond our reach, for we serve a God who can attain those things.