Wednesday, December 17, 2008

Monday's Appointment at Children's

Monday morning we had an MRI scheduled at Children's Hospital. We have been waiting on this for just over 6 months. It was originally scheduled for November 26th, but Karter was too sick to go and we had to postpone it. Karter was sedated for the scan and was in and out within about 35 minutes.

After the MRI, we had a neurology appointment. We ended up getting in an hour early (which was amazing). We met with Dr.Conoly, whom we have not seen since June. She was thrilled with the strength that Karter had gained since the last time she saw him. She was happy to see that he was tracking and concentrating much better than in the past. She commented on how well he was doing, the babbling, the smiles, how healthy he appeared etc. All good things for me to hear.

One huge answer to prayer was that his head had grown. This was the first time in almost 18 months that there has been any growth. This was something I had been really praying for,something I asked the Lord to show me as an encouragement to my spirit and my faith (call it a fleece, call it a sign or whatever you want to.)So thank you Lord!

Technology is an amazing thing. Dr. Conoly was able to pull up the MRI that Karter had an hour earlier right on the computer screen in the room where we sat. She showed it to me and walked me through it. What an amazing thing to see. She will review the scan further and we will talk in depth about it next week, however what she did say was two fold. First off, she comment on how small the resection (brain surgery) was that they had originally done back in May of 2007. She did say that the abnormality does clearly appear to extend further back behind the original resection. So at this point, we are going to re-look at further surgery. Karter has not responded like the had hoped with the first surgery. We had know that there was a possibility that we may need to go back at a later time and revisit the idea. It appears that we are going to go down that road again. They really want to try and get his seizures under control and obsolete is at all possible.

Next Monday we will stay in hospital for 24 hours to do a prolonged EEG (overnight). That will tell us if there is seizure activity happening in his sleep or at other times in the day. We will meet with Dr.Conoly that day as well as with the dietitian to get some ideas on how we can help Karter gain weight - something they are a bit concerned with.

After the neurology appointment, we met with Dr. Matsuba, an opthamologist. Although I did understand what he said, I am struggling with the words to reiterate it back to you. The long and short of that appointment was that Karter does have a visual impairment. Not one that needs glasses, but rather one that is caused by his brain abnormalities.

Part of it is that he cannot see 3D (so if he was to watch a 3D IMAX movie, he would not be able to see the images that pop out of the screen). In everyday life, this could possibly play out in depth perception - things like climbing stairs etc. But is easily overcome. IN addition to this, on the left side he does not respond as quickly to stimuli. So if I hold up an object on the right side, he will look immediately. If I hold up the same object on the left side, it is not an automatic reaction for him to look, it takes more time for the brain to process that stimuli, thus taking a longer time to focus on the object. The good news about this, is that we can improve and change the impairment over the next few years. Vision is not established until you are 6-8 years of age. The doctor felt that Karter was already well on his way to correcting this and he gave us some ideas on how to work on this daily.

It was a busy day, full of information and lots of things to think about. We feel very positive about the day but do also covet your prayers as we embark on another part of this journey and gear up to make some decisions on behalf of our sons well being.

Wednesday, December 3, 2008

A BIG Boy Bed

We had decided last week, that it was time to move from the crib to a bed. There were a few nights that I came in and Karter's long legs were peeking through the sides of the crib. There were other nights when I would come in and he was either completely sideways, with his legs and feet up the side of the crib or he had scooted to the bottom of the crib and him legs were up the end of the crib. It was looking like the crib was getting to small. So Sunday we made the move.

Karter was thrilled with his new sleeping arrangements. We had a spare twin mattress and so we used that. Both our kids cribs turn into a double bed (head board and foot board) however, at this time, we could not afford to purchase the double mattress (after Christmas maybe). He will be getting bedding for Christmas (although I am still looking for that). We put the bed rail up, just as we did with Paige when she transitioned. There were no problems - this was an easy sell for Karter. Every time we ask him if he is in a big boy bed, he just grins and laughs. I think he likes it!

I left the crib up, just in case the bed did not work, but this weekend that will be disassembled as well.

I took some pictures of him during his first nap in the bed, just before he went to sleep.

 
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Sunday, November 30, 2008

When God Speaks, We Listen!

At the beginning of the year I told you I felt that the Lord spoke to me that this year was a year to "Take back what the devil has stolen from us".

I sat this morning reminiscing of the year gone by; the things Karter has accomplished and the goals we had set. The house was quiet, Paige was at church (I wasn't feeling well so Karter and I stayed home) and I was spending some time praying and conversing with God.

The physical goals we set this year for Karter was that he would be sitting independently and that he would be rolling. Is he there yet? - well no. He is really close in both areas, but we have not yet reached our goal.

I started thinking about it and thinking about what it was that I was certain that the Lord spoke to me at the opening of this year. I found myself becoming a little discouraged. "Lord how are we taking back what was stolen if he cannot even sit or roll?" Then as quick as I could think those thoughts, the resounding answer "I did give you back what had been stolen." I thought about it for a while - "really?" And then it came to me. Karter has never rolled or sat or walked or talked - so that was never stolen from us, it couldn't have been, that is something we never had to lose. It is something we will have, we just have not seen it happen YET.

So I sat a while longer and started to think about what it was that we had lost last year. Here are a few -

1 - Because I quit my job and had no income for 8 months (so that I could properly care for Karter in the beginning stages of this journey) we lost our financial stability. Not wealth by any means, but the comfort from month to month that things were taken care of.
2- Mental and Physical Wellness - Although we maintain that God truly has carried us in this journey and has sustained us, there were definite times of real stress and times where (me especially) our coping strategies for everyday life were challenged. I have shared with some of my close friends, that I did see a wonderful woman counselor for a time. Something that I stand today very proud to say I have done.
3- A cohesive family unit - When you spend close to three months on and off in the hospital and then life as you dreamed has been turned upside down, the time for extra things as a family falls by the wayside. Time together doing things like planning to go camping, going to the park or doing other family things, tend to get overlooked just so that you can get through each day.
4- Fear of not being able to take care of Karter properly - we had no idea what Karter's needs would entail. Nor do we really fully now. But we do have an idea when it comes to therapy and different equipment needs. Both of those are very expensive. With Kurt's salary, those things are financially unattainable. Something that was really scary for us.

I have said all that to share this with you. This year we have really seen breakthrough in all of these areas. Here are some examples of that:

1- I have been blessed with an amazing job. One that I can do from home at my own pace. Although it does not allow us to retire early (grin) it does help out financially every month. In addition to that, this year we were blessed with a miraculous tax return. One that honestly I cannot speak of without becoming emotional over. Karter received disability status and that status was backdated to his birth. The government recognizes that with a monetary amount to help families each year recoup some of the costs and burdens that may take on a family. We were able to pay off the debt that we incurred the previous year when I ceased to work. In addition, there were other benefits that we received. That tax return was also stretched to allow for us a beautiful family vacation. We took back the financial insecurity!
2- Although I feel a bit funny sharing this, I feel it is important in this post. Early this year, I hit a point where I had to make a decision to be healthy. My body was weary and I had to choose to make some lifestyle changes that would make me well for my children. If I was not healthy, how could I do my job as a mother and take care of my kids? I changed some things and finally lost the baby weight (ok almost all of it - I am still working on the last few), I found a way balance out my hormones (they were completely out of whack from having children) and made time to be active. These things revolutionised my ability to cope. I felt good about me, I felt well, both physically and mentally. Joy consumed me in a way that I had not felt in a long time. The outside of me became a spiritual expression of who I was on the inside. I felt at peace with myself both mentally and physically
We took back mental and physical wellness!
3-This year, as we spent less time at the hospital and more time living, we found ourselves with the luxury, once again, of planning. The spring and summer months were filled with days at the beach, fishing trips for Paige and Daddy, trips to the park, BBQ's with friends, a family camping trip and an amazing vacation to Maui. We made many memories this year as a family. We took back family time!
4-Finally and most importantly, we have been SO blessed this year. Early in the Spring, we received confirmation that Karter had qualified for the government 'At Home' program. It is a program that will fund his equipment needs and various therapy needs he may have in the future. What a weight lifted! These were expenses in the tens of thousands of dollars - unfathomable for us on a church salary. In additiona to that blessing, throughout this year, the Lord has laid it on various hearts of those who love Karter, to bless him with monetary gifts towards his pending riding therapy (commencing in January of 09)- another expense that we would have had a hard time finding the funds for. I am happy to report that he has enough money to cover every penny of those expenses until the summer (that is three 10 week sessions of riding therapy) There are other countless blessings, too many to write about here. Karter has been taken care of, better than we could have ever dreamed - Fear of taking care of him - Taken Back!

I shared this with you not only as an account of the great things the Lord has done in our lives and Karter's this year, but also to say that sometimes God speaks to us and we do listen, but we hear how we want to hear. I heard with blinders on. I thought the only thing He could mean had to do with Karter mobility. When I look back now - He had such a bigger plan for us and our little guy. We will see those goals met, for certain. But our needs were taken care of well beyond what we could have even fathomed. God won - we did take back what the devil had stolen from us, that is the truth! We serve an Awesome God!

Wednesday, November 26, 2008

What's Happening Around Here?

Time is flying by and I realized that it has been near a month since my last update.

Karter was scheduled for an MRI today, however due to illness, we had to reschedule for December 15th. That day we will also see the opthamologist and the neurologist.

Karter has been so happy lately. Enjoying playing and watching what goes on around him. He has been a really pleasure to be around. He continues to make small gains every week. He is still rolling to his side and grabbing somewhat with his right hand. At physio yesterday, we were working on sitting. It was the first time I really saw him sit almost solely on his own. He is really close. He continues to get stronger all the time.

Our physiotherapist has confirmed that Karter will start riding on Thursday mornings at 10:30, come January 9th. We are so excited about that. We have heard such good things about this therapy. I will take a 1000 pictures of his first ride - you can be sure of that! You will be the first to see them.

Other things on the horizon...we are going to move Karter from a crib to a bed. There have been quite a few nights where I have come in and his legs are either up the side of the crib or his foot is stuck between the bars. As he starts to move more, the crib appears to get smaller. With the possibility of sleep seizures, we feel it is time to remove the harm of getting his leg stuck between the bars and getting injured. So it is off to look for bedding...a Christmas gift from us.

Karter's neurologist has started him on a low does on Nitrazapam, a drug he was on before. We give it to him only at night. Since he has been on it, he has not had a sleep seizure, night or day. I am really not thrilled about this drug because it increases saliva and makes him drool. In the past, it also contributed to his reflux. I hope that this is just a temporary fix. I will talk with the neurologist on the 15th when we see her at the appointment.

We are gearing up for a great December. Christmas will be at home this year, as Kurt's parents are going south for the winter (ahh retirement!. We hope for a visit from Kurt's brother Mike and also look forward to our Aussie friends returning for Christmas.

Saturday, November 8, 2008

Aloha! - Hello, we are home!

Well, it has been about a week since we have returned from our amazing time away. I spent the last week just catching up and re-introducing myself back into reality. I figured you may be interested in an update on Karter.

While we were in Maui, Karter started having seizures in his sleep. About 40 minutes after he fell asleep, he would be woken by a seizure. This would happen at nap time and in the night. We called Children's Hospital and they advised us to increase the dosage of his medication. We did. The seizures went from three times a day to once or twice. They have continued fairly regularly since then.

We do have an appointment with our family doctor this week and with Dr. Connoly at the end of the month. I will be calling again and they may have to up that appointment. Although it sounds like we have taken a step back, we feel like this is par for the course. Karter has not regressed in any way. Really, I think we have made a few gains. He is not really effected by the seizures, he just returns to sleep after they happen. It will however be interesting to hear the doctors perspective on what is going on. It is becoming increasingly harder to keep his meds balanced now that he has started to grow and gain weight - but we are so thankful for that growth.

While we were away, Karter started to roll to his side quite frequently and has made it over a few times. He is trying really hard, it is so nice to see that motivation in him. Also, we have seen him really start to grab things on this tray with his right hand. It is purposeful movement, something we have not yet seen. In addition, we have noticed a real improvement in his tracking and eye gaze. He is tracking objects and people a lot better now. He is also making much better eye contact.

I will keep you updated as to what the outcome is with this influx of seizures. Please keep Karter in your prayers and join us and we pray that these seizures will pass and come under control with easy solutions.

Monday, September 29, 2008

The appointments

I received a call late last week to book Karter's MRI appointment. It will be November 26th at 7am. We will then meet with Dr.Conloy that afternoon at 3.

Karter will also meet with the Opthmologist on Dec 15th at 1pm. This is to check his vision and talk about any possible impairments he may have.

This morning we met with the equipment team at the Child Development Centre in Surrey. We will meet again on November 3rd to make a decision on some alternative seating for Karter. In that category is wheel chairs, and seats for him to use until he is able to sit and move on his own.

Obviously, we continue to walk a journey of faith believing that Karter's recovery will be complete. However in that journey, the day to day challenges of his lack of mobility TODAY are something that we will address for however long we need to. It does not change our stand in faith but rather just brings it to light in a realistic way. Until we see otherwise, we will proceed in this manner. Trusting God every step of the way that tomorrow will bring about bigger and better things for our little guy.

We are off on vacation for three weeks starting next Monday. I will do my best to update as I can. You can check our family blog in the meantime at www.kurtcharwitt.blogspot.com.

Sunday, September 14, 2008

What's going on?

It has been a bit since I posted and some of you have asked how Karter is doing. Karter has been sick this past week - a cold and ear and throat infection. This past week we also went to the lab and had our blood tests done for the chromosomal testing for Karter. Karter was a trooper. After an hour of trying to get enough blood out of him and two badly bruised arms, we left the lab. The blood has been sent to Children's Hospital for testing and we should received a call this week, should there be some findings. If not, they will not call.

Karter has been seeing a pediatric chiropractor over the past two weeks. At his first visit, after the chiropractor examined him, the findings were that Karter's C1(basically the vertebrate that your entire scull sits on) was pushed severely out to the right. His vertebrate in the centre of his spine was twisted and his hips were locked.

At the first visit, just the neck was addressed, so as not to put too much stress on the body. (Karter was also sick and we did not want to move too much). The adjustment very gentle, almost didn't seem like anything was done. At the second visit, the mid back was addressed and this past visit the hips.

I was asked to pay attention to see if I noticed any differences in Karter. This is always a hard thing, because you look so hard that sometimes you think you make things up. However, I reported that I felt Karter was sitting straighter and more sturdy and that he was baring weight on his legs a bit more. The chiropractor confirmed my thoughts about Karter sitting straight when he walked into the waiting room and commented on it.

I do not know if it is related (but I am going to say it is) but Karter has started to roll around a bit more. Moving to his side and all the way over once. So we will continue with the treatments until Karter's spine in back in normal alignment. We will be thrilled if it makes a difference in his mobility, however we will be happy if he is more comfortable.

On a side note: Karter has been put on the list to receive riding therapy in January. This will be Thursday mornings and he will do this with his physiotherapist. This is something that we will have to pay out of pocket, however we have heard amazing things about the results of this program and what is does for a child's mobility. For Karter's birthday, instead of gifts, family and friends donated money for him to receive two 10 week sessions of riding (the cost is $300/10 weeks). We are blessed and Karter is so loved.


Should I hear something from Children's Hospital, I will keep you posted.

Wednesday, September 3, 2008

We're back...




We took a family trip to Oregon last weekend (check it out at www.kurtcharwitt.blogspot.com)

Last week Karter had an imbalance of his meds and was having about 2-3 seizures each day. We have adjusted is meds and he is down to one a day. We will be upping the meds again today and that should take care of this little episode.

Karter appears to have put on about 2+ pounds. We are so thankful for this as it has been almost a year since he has gained any weight.

I just received a call and Karter is now going to receive regular speech therapy from the Child Development Center. We are thrilled for this as most children do not get this type of support until about 4 or 5. Because Karter's referral date into the program was at 5 months of age, his place on the waiting list came up sooner than age 4. We are so thankful.

Other than that, there is not much to report. Each day we are thankful for the small milestones and look to tomorrow for bigger and better things.

Tuesday, August 19, 2008

It's been a while...

I know, I know...

Since the last post, we have yet to get to the lab and do the blood test. It is not that we have purposed to put it off, but rather just run out of time. It has to be done at the beginning of the week (as the blood is only good for so long) and we need to contact Children's Hospital before going in - needless to say - we have not done it yet. Looks like it will happen in the first week of September after our holidays.

New things... Karter has started to grab at his feet and reach out at times for objects that hang and move. He is still reaching for objects beside him while he is lying on his back. The awareness of his hands is starting, but we still have a long way to go. We are continuing to push him to spend time on his tummy so as to strengthen that shoulder gait and thus improve his accuracy when using his hands. He is still chatting lots with his sounds and at times is mimicking what we say to him. This has been really fun for us. He loves his peek a boo games and lights up when Paige enters the room. He has started to get a little fussy when left alone in a room - this is a pretty typical things for kids to do when they develop an awareness of people and their surroundings. So we are thankful for that milestone as well.

In the past few months it has become quite apparent that Karter at times has difficulty focusing on a task or on someone who is trying to get his attention. Our thought was that it was not that he cannot hear them, but rather that he was either not interested or just plain ignoring. There have been times when we are working on tracking objects that I have noticed he loses focus or will not follow in certain areas. We are waiting on a referral to see the pediatric opthamologist. After an appointment today with his IDP consultant(after playing some games), I wonder if there may be some vision challenges. He can see, there is not doubt in my mind about that, however I wonder if what he sees is clear. When we play with him up close, he focuses really well and attends quite well. When there is someone in the distance, his focus is not so tight. So I am going to look into that this week. We have waited on Children's for a referral for over two months now, so I may look into something local with a bit of a shorter wait list. Karter did have a vision test at 6 months, and at that point they did say that his vision was fine, but that they wanted to re-look at it in the future. So we will see.

Also, the IDP consultant told me about a new pediatric chiropractor in town that specializes in children with special abilities(he does take all patients, children and adults). I have been a firm believer in chiropractors ever since I was cured from chronic headaches and migraines and Karter was curred from his colic at 6 weeks old. This chiropractor does a full body scan to see where the stress points are and then works with the patient to fix those areas. There have been children in the Child Development Centre who have speech issues, mobility issues like Karter, bowel issues etc and they have seen rapid changes in their development with some minor adjustments. I am interested in checking it out. I plan to make an appointment for the upcoming weeks.

We leave for a week of holidays with my parents and brother and his family on Friday. We are going to the Oregon Coast. We are really looking forward to this time away. It will be the first time we have been away in a year and we look forward to spending time as a family and just having some down time.

Saturday, July 26, 2008

Children's Appointment...

Its been a busy day, a flurry of activities around here. I thought I would update you about yesterday's appointment. Nothing earth shattering to report, long story short, they will be doing a simple blood test on Kurt, myself and Karter to look to see if there are any chromosomal disorders that are the cause for Karter's Epilepsy.

Basically, we talked with the neurologist who specializes in genetics and genetic research in Epilepsy. She was very informative and I enjoyed the information that I learned. She talked with us about family genes and my pregnancy and other factors that could have caused Karter's seizure disorder. When it all boiled down, it appeared that there would be no reason that my perfectly normal pregnancy or our family genetics would have affected or caused Karter's condition. Most likey, it was "just one of those things".

When they do the test, they will color each of our blood a different color and match up of our chromosomes to Karter's. That will show if there are things added or missing in Karter's, those types of things would indicate a chromosomal disorder. In most cases, Epilepsy is a symptom of something else. This is not a new diagnosis or something else they are looking to treat, but rather a baseline for answers for the future and for why Karter's development and growth is so slow.

In 50% of all Epilepsy cases, there is no found cause. This is because our results are only as good as our technology for testing. We can view the brain through CAT scan or MRI, but that still does not show everything. There are areas that we are still unable to see with modern technology. There are over 800 cases in BC alone, where children have unexplained Epilepsy. I found those statistics astonishing, but very interesting.

We have been told that this test that they are doing is in the research stages. Karter will be 1 of 50 in the study. The test is 100x magnification rather than the 10x magnification that they use in the approved test that is currently used for genetic testing. So if anything, we can help them find a way to help others as well.

It always amazes me the opportunities that God puts in our path. The resources available to us, the medical care, the people in our lives, etc. I can only see it as the favor of the Lord. Little divine appointments all along the way.

My article for work...

As most of you know, I work from home, for a company called Praise Charts. I LOVE what I do! It is some customer service, some accounts receivable and my newest venture has to do with the overseeing the arraigning of songs and copyright administration.

It suits so many needs for us. I can work from home, suiting my hours and my schedule and I can fill my love for admin type work, plus I can help out with the bills each month.

We have a part of our site, called PC live. That is a resource based site, where music pastors and worship leaders can go for ideas and other things. We will be releasing the new Hillsong Cd "Our God Saves" in the next few weeks, but I have heard and been touched by the songs already. One of which is 'Desert Song' (I posted about it a few weeks back).

I was asked to write an article for the PC live site about how it pertained to our situation and what it touched me so much. I thought you might want to read it. So here it is:

The newly released Hillsong Album, "This Is Our God" is a collection of beautiful songs that have come from the deepest caverns of people’s trials and journeys with God and has captured the heart of who Christ is in us. This album is another that will lead the global church in cutting edge worship, with such powerful songs such as Healer and Desert Song.

I had been asked to comment a little bit on Desert Song. This song has become an anthem for me. My "Lifesong" if you will. The first time I heard it, I was able to identify with the cry of Jill’s heart.

I am a mother of two beautiful children, 3½ and 2. My youngest, a son, was born a healthy little guy…full of wonder in his eyes and with much strength. When you have a child, you dream for them, you have great expectations on what they will be able to achieve and do in life. And, you wait in expectancy for those things to play out. That is the fun of being a parent.

At three months old, my growing boy started to have seizures. We spent many weeks in and out of hospital trying not only to control them but to find a reason to explain them. As you can imagine, our world was shattered. The unknown was closing in all around us. In the months preceding the first seizures, he developed a condition called Infantile Spasm Disorder. This is a chaotic brain rhythm, which can be detrimental to development if not contained. We were able to control these luckily with medication. In the meantime, it was found that our son had an area of abnormality in his right frontal lobe. Thus a reason for the seizures. At ten months, he underwent neurosurgery to remove this portion is his brain.

After surgery we had three months seizure free and since that time two other periods of time where he was seizure free. However, to this day, he still has periodical seizures and his development is very delayed. The feeling of the doctors is that there are other areas that they cannot find that are abnormal as well. So from what the doctors see, this may be the way things look for him.

I tell you this from a very clinical standpoint, so that you can understand the facts. But, I have a much bigger investment with the Great Physician. I put my trust in Him not in man. I am thankful for the provision of doctors and for the favour in our treatment thus far. But I choose every day, to believe that this is a season. A season for growth, a season for trust and even a season of discomfort. But out of this season, and throughout our journey, God had still remained God.

Did I expect my life to look this way? Certainly not. However, I accept this path. And I can honestly tell you, that every day I choose to count it all joy. Does that strength come from within myself? No, it comes from the One who gives me what I need for today. I stand today with a faith that is strong enough to move mountains. Strong enough to keep me from becoming a puddle on the floor. Strong enough to face the giants of fear and to battle the unknown. My son will be well. I stand on God’s promise for that. Do I crumble at times? Of course I do, I am human. This is hard, but it is in those times, that I pick myself up and say “Thank You, Jesus for being with me in this dessert, in this dry land. I will sing Your Praises. In spite of my circumstances, in spite of what I see with my human eyes today. In spite of how disappointed I feel. I will worship You.” That is my sole purpose here in this life, to worship. We will be victorious in Christ. He is our Conqueror and we are victorious in Him. This may be a refining process and for that I am fully accepting.

In the song "Desert Song", I love the line that says "I am a conqueror and co-heir with Christ". But my favourite part is where it proclaims:

All of My Life,

In every Season,

You are still God,

I have a reason to sing,

I have a reason to worship

That is it, people. In spite of it all, will we choose to sing? Will we still worship Him? Well, for me, it is a resounding "Yes!" Sometimes, it has been the hardest thing to do, to open my mouth and proclaim the promises that I have a hard time understanding and at times, believing. But honestly, the peace, the joy and the strength that has come from that sacrifice, is why I am here today. I still hope, I still believe and I still stand because God honours my persistence, especially in the hardest times. We will see victory over this situation. Even in this desert, "refine me Lord through the flame"

Thursday, July 24, 2008

Some thoughts...

Paige is out in the boat with Kurt and Grandpa this evening and Karter's schedule was a little different today. So I was left with a luxury I do not usually have...time to myself.

Instead of finishing the upstairs vacuuming and the laundry, I took some time to listen to a message online. The message was about persistence. Oh, how I was encouraged. I wanted to leave you with some thoughts that I took away. But first I will start with this -

You all have read along and some of you, walked along, this journey with Karter. You know that we stand on the promise that our son will be well. In spite of the things that are told to us by man, we believe in something much bigger. Call us disillusioned, crazy, in denial, whatever you will. This hope and faith is what gets us through from one day to the next. And if nothing else, it is what sustains us to keep pressing forward and not crumble on the floor.

I was talking with someone last week, she was telling me how she viewed how we walked this journey. She was commenting on our strength and the fact that God chose us because we were the only ones that they know that could have handled this. I thanked her for her comments, but quickly refuted them. I went on to tell her that people see the good in all of this. After I have filtered my feelings and emotions, got a handle on it and put my logical plan into action. People do not see the tears or angry words I speak to God. (oh yes there are some) The ultimatums I have made, the promises etc. I don't post those kinds of things here, for obvious reasons. But in those times, I always seem to come through with a stronger handle on who I am in Christ, and stronger faith in what God has promised me in His word.

I will tell you this, last week, I was angry with God. I asked Him to show me something, some kind of glimpse into what is to come with Karter. I know that faith is putting our thoughts and hopes in what is unseen, but I have done that for so long that I felt I did not have it anymore. I need to see something...after all, I am human!

So tonight as I listened to this message this is what I took away from it. The speaker was saying that some breakthroughs, some healing etc, come easy. We ask...we receive...period. And then there are others that come through persistence.

In the bible, Hannah prayed for years with persistence, for a child. When she woke, it was the first thing on her mind...she prayed. In the night, when she was unable to sleep...she prayed. She went through the day and thought of it...she prayed. Every breath she prayed for her need. It was that supernatural persistence, (years in her case) that brought her a child.

"Persistence is locking into something that you KNOW is the will of God". Wow that was a powerful statement for me! Locking into it... persisting...everyday, with every extra breath...every moment I think about it..persisting...

"Some breakthroughs come through friendship, some breakthroughs come through divine justice. Other breakthroughs come through nothing but a well you can touch only through sacrificial persistence"

The pastor left the congregation with Psalms 27. He said that he felt the Lord told him to tell the church that "this will feed you when you need an answer. Look to it often. This will supply what you need, take it and feed your soul"

The LORD is my light and my salvation;
whom shall I fear?
The LORD is the strength of my life;
of whom shall I be afraid?



When the wicked, even mine enemies and my foes,
came upon me to eat up my flesh,
they stumbled and fell.


Though a host should encamp against me,
my heart shall not fear:
though war should rise against me,
in this will I be confident.


One thing have I desired of the LORD,
that will I seek after;
that I may dwell in the house of the LORD
all the days of my life,
to behold the beauty of the LORD,
and to inquire in his temple.



For in the time of trouble he shall hide me in his pavilion:
in the secret of his tabernacle shall he hide me;
he shall set me up upon a rock.



And now shall mine head be lifted up
above mine enemies round about me:
therefore will I offer in his tabernacle sacrifices of joy;
I will sing, yea, I will sing praises unto the LORD.



Hear, O LORD, when I cry with my voice:
have mercy also upon me, and answer me.



When thou saidst, Seek ye my face;
my heart said unto thee,
Thy face, LORD, will I seek.


Hide not thy face far from me;
put not thy servant away in anger:
thou hast been my help;
leave me not, neither forsake me,
O God of my salvation.


When my father and my mother forsake me,
then the LORD will take me up.


Teach me thy way, O LORD,
and lead me in a plain path,
because of mine enemies.


Deliver me not over unto the will of mine enemies:
for false witnesses are risen up against me,
and such as breathe out cruelty.


I had fainted, unless I had believed
to see the goodness of the LORD in the land of the living.


Wait on the LORD:
be of good courage, and he shall strengthen thine heart:
wait, I say, on the LORD.


So I leave you with this... Are you needing breakthrough? Do you feel like God does not hear you or that He is choosing not to answer your prayers? Be persistent! This may not be one of those things that come easy. I know our answer for Karter has not come easy. BUT I do know this, I am prepared to be patient (as much as it kills me to do so) and to tap into that well of supernatural persisitence

Quick Update

Just thought I would let you know that we will be going to Children's for an appointment Friday at 2:30. Nothing baffling going on here, our neurologist has asked for another neurologist to consult on Karter's case. She specializes in genetics.

Basically at this point, there is nothing new that they are looking for, they pretty much have a handle on that. It is really just a fact finding mission, to get specific answers as to what(if anything)the exact underlining cause of Karter's global delays are. And to maybe get someone else's opinion on why his head would not be growing. There is no cure for 'Cortical Dysplasia' (that is his diagnosis at this time), it's definition means "abnormality of the brain".

So basically, tomorrow we are going to answer a bunch of questions and she can maybe share some other ideas with our neurologist as well. Just thought you should know. We can always use your prayers as we go. I will update when we get back.

I am getting to it.....

Just so that you know, I am going to get that progress video up of Karter. I have not forgotten. I have been working on it over the past while. The summer definitely has sprung into action around here and my time...well out the window that has gone!

So just please be patient, I will get it on here. My hope is to have it edited and on the site by next week. We will see....

Saturday, July 12, 2008

Karter's 2nd Birthday Party

We did a Nemo party for Karter's 2nd birthday. The weather was gorgeous. The kids played on the bouncy castle and on the playground outside while the adults enjoyed the beautiful weather and the company of each other. We had cake and munchies.

Thanks to all of you who contributed to Karter's horse back riding therapy. He will be able to do two 6 week sessions, what a blessing. Also, thanks for Grandma and Opa for the new stroller, it will make life so much easier for us.




Thursday, July 10, 2008

Happy 2nd Birthday My Boy!

Well as cliche as it sounds, 'Where does the time go?' I cannot believe Karter is 2.

We will celebrate officially tomorrow, but with all the goings on that the day will bring, I am sure there will not be sufficient time to Blog. We will have a party to celebrate in the evening. I will post pictures later this weekend.

To my beautiful little boy:
Little did I know when you came into my world 2 years ago, that you would change me so dramatically. You have taught me so much and I cannot believe how my love for you continues to explode bigger and bigger every day. You are a remarkable little guy. You are an over comer! You are a miracle in every true sense of the word. Never have I met anyone who could endure the challenges that you do and still keep a easy going attitude and a smile on your face. You are such a ray of sunshine to me and to everyone who shares a part of who you are. Keep moving forward you will make it! Your determination will shine through and carry us to the end. My prayer for you this year is that we would see miracles before our eyes. That you would astonish us with your progress and that you would keep being who you are in the midst of all of it. I love you son, you have been my blessing!


So, here are the official 2 year old pictures, taken this evening.




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 week...to 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 able...so thigns are coming along. Long way to go, but one step at a time, we will get there.

Thanks!

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 (www.godtv.com) 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 ckwitt@telus.net.

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.

Sunday, May 25, 2008

A few new pictures

Karter is suffering from a double ear infection (and he is teething yet again...as you will see in the pictures :-)). But in true Karter fashion, he is weathering it like a trooper. He has started to roll fairly frequently to his sides and we are so thrilled with his progress as of late. I keep saying that once he realized what it is like to move, it will be like flood gates! So please continue to pray for a rapid increase in his developmental milestones. Those prayers are not going unheard.

I shared with someone the other day that I have never felt so sure of things as I have this past few weeks. My spirit is so encouraged. That is only possible by the grace of God and by the prayers that surround us each day, each moment. I can never say it enough, thank you!






Wednesday, May 21, 2008

A Great quote...

My cousin Jamie sent me this in an email today, it really sums up life.

To get something you never had, you have to do something you never did. When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. The will of God will never take you where the Grace of God will not protect you.

Sunday, May 18, 2008

One year to the day...

Yesterday, marked one year to the day, of Karter's surgery. In many ways, it seems like a lifetime ago and yet, in others, I cannot believe it has been a full year.

I went into the week very aware that the "anniversary date" was coming up. Funny to think that I was a little fearful of what emotions would creep up as the day got closer. Really though, it was a really great day.

Being that it was the long weekend, and we were unable to get away, adding to that the fact that the temperature more than doubled as the sun graced us with its presence, we took full advantage of the weather and got out to do things together as a family.

Friday mid-morning, we took our first family trip of the season to the zoo. Paige took her bike and rode and Karter (between naps...exhausted from the heat) took in the sights from his stroller. We then took the kids to lunch at McDonald's (every kids fav place). That evening we went with the Yackel's to the beach and then out for ice-cream afterwards.

Saturday, the actual anniversary day, was so lovely. We drove out to the Glen (my parents own a place there) and we took the kids "camping" for the day. They both loved it. Paige ran wild all day long and Karter took in everything and really enjoyed himself.

I spent a great deal of the day and really the whole week, reflecting on this past year. I have to admit, that I had figured a year after surgery would look a bit different than it does now, but I am really ok with how things are. I thought maybe I would share with you a few of the changes from this time last year to today... reflecting this way helps me keep perspective and really helps me count my blessings.


Before surgery, Karter was unable to hold his head up or pay attention to what was going on around him. He had no tone in his body, he was floppy and his movements were few and uncontrolled. He really did not move his arms or legs. He had learned to roll from his tummy to his back, but then regressed to not being able to do that. He had horrible reflux and asthma. He was on a nebulizer 20 minutes, three times per day. He had not speech sounds. He would not express his need for food, love or sleep. He never cried. He was having uncontrolled seizures, sometime multiple per day. He was sick constantly (pneumonia twice last year). He was unresponsive, barely smiled. He did not laugh often... I could probably go on, but you get the picture...

Today...Karter is able to hold his head up and look around with full motion in his neck. I can carry him on my hip without having to support his head or trunk. He no longer lets his hands lag when being carried, he puts them on my shoulder or chest. On his back he kicks his legs and reaches to the side to bat at objects. He rolls without fail from his tummy to his back. This week he has started to roll to his side at times. He gets his legs up and kicks them as if trying to get them over his head. He does crunches that we can only dream of. Sometimes he will go for 15 minutes non stop...this kid will have a six pack before I ever will. He crosses one leg over the other knee when lying or playing on his back and is starting to grasp the leg slightly. He is able to sit in the Bumbo seat, walker and jolly jumper without being propped up with blankets. He can sit on our lap without much support. In his highchair, he often reaches or bats at toys. On his tummy he is able to lift his head 90 degrees off the mat (when we can keep him from rolling over). He is able to eat without gagging on food. He is tolerating cold foods without throwing up. He is making lots of sounds. He cries to tell us what he wants and to express his basic needs. He giggles and laughs and smiles at us. He loves songs and anticipatory games, like peek a boo. I often say that he has become an active member of our family, he can communicate with us in various ways now. He recognizes our voices and cries when he is left alone in a room to play. Yesterday, I was able to put him in a swing at the park without supporting his head or propping him up with blankets. (I remember specifically doing that the week before surgery). Karter no longer suffers from reflux or asthma. He has had a couple of colds and one ear infection this year, but what child doesn't in the winter. His seizures are controlled very well with his medication now. The last full seizure he had was Easter Sunday, Praise The Lord!!!

So even though he is not running, talking and playing like other 22 month old's, Karter is doing what Karter is able to do right now. And for that we are so thankful!

I heard a really neat thing this week. "Healing is gradual, Miracles are instantaneous." I believe we are seeing healing right before our eyes each day. And a miracles is what I continue to pray and believe for. There is no doubt in our mind that Karter will be well, our prayers are not unheard. If I have learned anything in this journey, it is not to put God in a box and give Him the expectations. He is the one who is charting the course of this journey we are on. He is in control and He will get us to where we need to be, right on time (His time maybe...).

So continue to pray, we are moving forward, which is one thing I cannot say for last year. An keep believing with us that we will see a miracle in Karter.

I will leave you with one last thing. Over the past 6 weeks, there have been more than three people (not any of which are really connected to each other) who have said that they felt like the word for Karter that the Lord had impressed upon their hearts was this "Karter is of the generation that will see and receive miracles." Each word was so similar to that, it was astounding. When we are weary, and we do get there, God always seems to remind us through many different ways that He is still there. You have read countless times on this blog where we have testified to that. So keep the faith and believe that our faith will be deepened when we are all able to celebrate Karter's miracle.

Blessings!

Sunday, May 11, 2008

Giving...

The definition of giving is: to present voluntarily and without expecting compensation, to relinquish or sacrifice, to place in someones care.

The synonyms of giving are: bestowal, donation; presentation, accordance; concession; delivery, consignment, dispensation, communication, endowment; investment,award.


This past two weeks has really put us on the other side of giving...the receiving side. I shared with you about the real life "angel". In the past post, I also mentioned how that gift came at a real time of seeking God and asking for Him to bestow good things upon us. I was starting to feel weighed down by the sad things that were coming our way. But in this past few weeks, I have really started to live out and see that our God is a God who gives good things. He wants us to receive good things of and from Him.

I LOVE to give gifts. For me, it is one of my biggest love languages. If you are like me, you know that it is really hard to receive things. It feels great giving to others, but when others reciprocate back, you don't know how to respond.

In the past 18 months I have been offered help on a number of occasions. After Karter's surgery people brought us meals for two weeks, people have offered to care for our kids, to come and help with Karter's physio etc. I am learning that accepting these gifts, as hard as it can be, is really what God expects me to do. The giver has responded to the prompting that the Lord has put on their hearts and they in turn, are responding to the need that deep down I have asked God for. So in not accepting the gift, I am not honoring the giver. Even though I know this in my head, it is still such a struggle for me to just say "Thank you".

Since the last post, we have had two other beautiful gifts come our way. The first from a couple who is close to us. They came by the other night to bring a card and a gift certificate for a night out as well as babysitting for that night. They really felt that Kurt & I needed a night out together. Which was how we were feeling too (I took Kurt away for two nights for that very reason). Upon arriving home for our much needed retreat, in the mail, was a card and another dinner gift certificate from another couple we know. Literally, Kurt and I stared at each other, no words to express, just pure gratitude and awe.

So we are learning to receive. And God, in His infinite wisdom is allowing us to learn this at a time when we need it the most. My encouragement to you is this, take the time to give. But more than that, let the giving be a sacrifice. If giving of your money is not really a sacrifice, then give of your self or of your time. Because know this, in your time of great need, you will have the opportunity to receive. And hard as it is, and as uncomfortable as it is, it sure makes you feel loved, appreciated and well take care of by others and mostly by our Heavenly Father.

To those of you who have given to us in all your various ways, through prayer, through your love and support or by your gifts; simply "Thank you".

Saturday, April 26, 2008

A real life Angel in our midst...

You know, I have always said that children in their simplicity, have the ability to see angels. I have watched as both my children at young ages, when life has not complicated their thoughts, have laid on the floor starring at the ceiling watching and giggling at what is above them. An Angel I am sure, playing games with them...

Not that I question if they are out there, cause I know they are, but as adults, our lives get so complicated and full of "stuff" that we lose the ability to see them. Sad really, but reality.

There have been a couple tough days this past week. Could be that it was due to being sick (it always takes our guard down and make us feel less like ourselves) or could just be "one of those days".

I am a planner, so there are things in life that I have looked forward to for years and maybe even decades. Ideas of how life was going to look when "you grew up". Marriage, children etc, etc. We all do it, we fantasize a bit about how things are suppose to be. Some of those things turn out that way, some don't. Sometimes things turn out better than we could have ever dreamed and then sometimes they don't. We can all relate with this right? There are things in life, that just don't always go as planned.

I am starting to realize that those things that don't turn out "just so" are not bad things, but rather just an adjustment of our preconceived notion. A small move off course. Sometimes, it shakes us a bit, but then we jump back, make adjustments and keep going. We find joy and blessing in the way things 'turn out" even when it wasn't they way we thought it should be.

This is how I feel about our journey right now. It is definitely not what I ever dreamed of, but it is the reality that we are joyfully living. God is good! The hard part is when the dreams that you shared with others, change because of it. We walk our reality day in and day out. To us, it is normal. But for others that watch, it looks hard, and they may not fully understand the impact and changes that we have made because of it.

We had to close the door on something this week that we have planned for almost 10 years. Sad to have to so no, but things change, circumstances change. I struggled a bit and wrestled a bit with God on this. We argued back and forth, but in the end He reminded me that He is still here and that He will come through. Maybe I won't see the full extent of that today, but He will come through.

I went out today with the kids and a friend. And I was looking at something for Karter. The purchase was a bit above something that I would just do without talking to Kurt about it. It definitely would make life easier with Karter, but I still wanted to consult Kurtis on it. After getting home, I called him to tell him about it. I had just got off the phone with him and we had discussed that maybe this item would be a good birthday gift for Karter from a grandparent. Then the phone rang again. It was the sales clerk. She let me know that the item had been purchased for us by in her words "an angel". All I needed to do was make the decision as to the specifics of it. I began to weep while I was on the phone. All I could say through my tears was, "wow, uh, thank you".

I have spent the past few hours really pondering this whole thing. Giving, what a powerful thing(now I am sure that is no shock to anyone)... Furthermore, giving when God impresses it upon our hearts...even more powerful! We have no idea where that person is, what their needs are or what it would mean to them. But if we choose to walk in obedience not only are we blessed but we change the life of someone else, possibly forever.

We have been taught often in the church to give of our money to the Lord and I think for most of us that has become habit (a really good one don't get me wrong). But more than that, giving of our time, of ourselves, of our talents, of our heart, our home, our love etc...that is more priceless than any amount written on a cheque. My life was changed today. Not just because of a gift, but also because God silently reminded me in that gift, that He is always caring for our needs and our kids needs. He has not yet forgotten us, nor will He ever! Also, just when I think that sometimes there are only tough things that I receive from Him, I received such a humbling, through a generous act of a precious Angel. A beautiful, precious, selfless gift...priceless!!!!

Thursday, April 17, 2008

An answer to prayer...

I got an email the other day confirming that Karter was approved for the medical portion of the "At Home Program". This means that any equipment, perscriptions or other medical needs he has, will be covered under this program. PTL!!!! I was informed that he did not qualify for the respite dollars. I have to admit, I was really hoping that we would recevie those so that we could pay someone to come in a couple times each week and do his physio routine with him. But was thanksful that the other portio (the bigger finacial burden) was taken care of.

This afternoon, I recevied a call for Community Living BC, telling me that even though he did not qualify for the respite care through the provincial At Home Program, there was another program that he qualifies for on the municipal level. He has been waitlisted for the time being, but will be receiving respite dollars through that program in the future AMEN!

An update on Karter:

Other than the normal teething and a slight cold, things are really going well with Karter. He has been receiving some extra therapy to round out the flat portion of his skull (this is so facinating, I wish you could all take part and watch). There are two therapists that come to do this, his regualr therapist and another one who is trained well in this type of therapy.

The reports on Karter's progress are very encouraging. Both therapists feel that his strength has increased and that he is doign really well. They mentioned that they feel he is so close to rolling. Now, I am not sure what close refers to...a month, 6 months...but regardless, he is doing well and we are making gains every day. He is vocalizing more and more and louder and louder each day. We are so pleased with where Karter is and where he is going.

Wednesday, March 26, 2008

Today's update

I am not sure if I mentioned dn a previous post about the "At Home Program" or not. In any case, we applied about 3 weeks ago to get Karter on this government assisted program. It provides funding in two parts, medical (which would cover the costs of equipment he will need and prescriptions he needs) and respite ($ to cover any extra care expenses we have for him).

When I applied, I was told the wait time is anywhere from 3-6 months, for approval. I was also told not to be discouraged as most people can be turned down the first time. Basically, to qualify fully, you need to have dependencies in 4 areas. Toileting, feeding, dressings and bathing. Motor skills are considered after those criteria are assessed. Where Karter is dependant in all those areas, the program does not recognize dependence in toileting or bathing under the age of three. So he only meets two out of four criteria. That may get us one part of the funding but possibly not the full funding.

In any event, I write to you today fairly hopeful. Within 1 week of the receipt of our application, I had a call from the "At Home" committee liaison. Two days after that I had a call from the nurse that comes to do a home visit. Today she completed our visit. There is a meeting on the 1st of April that will determine Karter's eligibility for the program. She let me know that we should know in about 2-3 weeks what the outcome of our application is.

From a wait time of 3-6 months to about 5-6 weeks, we are thankful. Our prayer is that there will be favor for Karter and that we will not be turned down or only qualify for one part of the program. The wait time to re-apply is one year. So we are asking that you join us in bathing this meeting in prayer and that favor will be all over this.

This is a tough step for us as we come to grips with the reality that from a medical standpoint, Karter will require equipment to aid in his daily life. We wrestle in our hearts daily between medicine and God's divine intervention. We continue to believe for great things for Karter and feel as his parents that we will advocate for the best possible care for him until we see he no longer requires the need for assistance.

Please pray for us as we venture on this next leg of our faith journey. We have come to a place in our travels where we really have to step out and test the idea that faith is believing in what we do not see. I cannot tell you the inner battle this has become for me. I wrestle daily with doubt and fear and then on the flip side with joy and peace. It is such a paradox of feeling and emotions that go through my brain. Please pray for me that I will not be consumed by over thinking things, as I can so easily do.

To God be the Glory! That is what we want, for Him to be glorified in this. I claim that there will be a day when we will look back at these insurmountable obstacles and say "God brought us through and we stand here with our miracle!"

Thanks again for your support. I just mentioned to someone the other day that some people look for a lifetime for one good friend, but we are blessed with an army of them!

Friday, March 7, 2008

If Not For Your Grace

This post is a duplicate from our family BLOG, but thought it was meaningful enough to double post:

The choir is doing a really beautiful song at Easter, it really speaks my hearts cry. I thought I would share it with you.

If Not For Your Grace

(verse)
Where would I be if not for your grace
Carrying me in every season
Where would I be, if not your grace
You came to my rescue
And I want to thank you
For your Grace.

(Chorus)
Your Grace that restores
Grace that redeems
Grace that releases me to worship
Grace that repairs,
Visions and dreams
Grace that Releases Miracles
Your Grace

(Bridge)
Where would I be if not for Your grace.

I described to someone the other day that I felt a little like Job. We are walking through a season again of real unsettledness (is that even a word?) in our family. A time to depend and believe that God will come through as He promised. We are standing for healing and health, as we do everyday in our lives. I have to admit, that at times I find myself thinking, "Ok God there are others you could bestow tough times on your know" or "Will this ever end?". This song really spoke to me, reminding me that I would be nowhere with out the grace of God. He has been so faithful!

Blessings all. Don't stop believing, God is a God of BIG things! He will come through the way HE intended. Celebrate the cross everyday, not just at Easter, but in every good and hard time of your life. His grace IS sufficient for us.

In addition:
Karter is doing really well this week, even despite the three molars piercing his gums :-)

He has started to lift his head off the floor 4-6 inches, while laying on his back. It is like he is doing sit ups. Also, his sitting has improved a lot, he is sitting with minimal assistance now. and he is really using his right hand to grab at toys. these things emerged in the last two weeks.

We really feel like the gapo between milestones, has closed. We are not longer waiting 4-6 months to see changes. We are very thankful for this! Keep praying all, we are taking back the time that was lost! PLT

Wednesday, March 5, 2008

A quick update

It has been a while so I thought that I would give you a short update. It is funny how time flies so much fast when things are not so up in the air and you are not clinging desperately to each moment to survive.

These days, things seem to be pretty "normal", our normal however, may look a bit different, but it is ours at any rate. Karter is cutting four molars right now which is making him a bit miserable at times but lets be honest we would be too if we had four teeth pushing through our gums :-)

I feel I have got a handle on the allergy menu now...it was really not as hard as I thought it would be. really no wheat, no dairy and no eggs would be this gist of it all. There are so many great alternatives that we have found easy ways to make his meals good and effortless as well.

We have noticed since changing his diet, that his random movements have really calmed down. His arms still flail slightly, but they are not flying around like they did before which is making it easier to notice that he is trying to purposely grab for various objects. it's pretty cute too, when he notices the left hand and studies it. It is like he is saying "oh there it is again". So we have made gains there.

His asthma and reflux are under control and virtually gone. He had his first cold that did not go to his chest. Once he is over it, we will take him off the reflux meds to see if it is soley milk that made the difference.

Karter is still receiving physio twice per week from sandy and Estelle comes in once a week to help him with his exercises (boy is that a gift!).

We has a speech consultation last week and it looks like he will receive active speech therapy as soon as September (was I shocked! PTL). She was pleased with what he was doing and figures he probably communicates at a 6-9 month level. We were thrilled at this.

Karter continues to gain core strength daily and Kurt and I were commenting the other day that the interval between when we notice him gaining round has become smaller. So for that we are thankful. I still hold to the claim that we will take back the time that was lost. I feel that is what the Lord gave me as a promise at the beginning of this year. WHEN? Who knows, but as we take each day as it comes, we realize that there is no better place to draw our strength from than the Lord. And we grasp daily to Him.

Thanks for all your continued prayers. You who are so faithfully praying for us will be blessed! We covet your prayers and your support.

Tuesday, February 5, 2008

That still small voice....

Karter has been suffering from reflux for over a year now. This has in turn caused him to have severe asthma, which has also contributed to his multiple colds, ear infections and pneumonia twice over the past year. I had become quite frustrated with up to four nebulizer treatments (for asthma) each day and the frequency of sickness that was plaguing Karter. Each bout of cold or sickness would set him back for weeks. So as the year started and we looked at our goals for Karter one of them was to get a handle on his reflux and his asthma. After deciding this, Karter got sick again and one night after his milk, he coughed so many times he vomited. This got me to thinking that maybe his milk was contributing to his reflux. So I decided to give it a shot and take him off of milk. At the same time I made him an appointment at the naturopath to talk with him about his possible milk allergy.

We had him tested for allergies and went yesterday to get the results of that test. Long story short, Karter has a toxic level reaction to all dairy (milk & cheese etc) and beef. The naturopath said that in 25 years he has never seen a child as young a Karter have such a large reaction (I think he said an adult reaction) to dairy, and never has he seen a child have a reaction like that to beef. Karter also has significant reactions to gluten, garlic and pork.

Since taking him off milk, he has gone from 3 or 4 nebulizer treatments per day down to 1 treatment in 10 days. His reflux is pretty much non-existent and he seems healthier than he has been in a long time.

These new found allergies explain a lot about his conditions and ailments. This explains why Karter is not gaining weight, it explains why he is having chronic ear infections and why he gets so sick so often. Also, it could be contributing to his low tone as well. The naturopath says that we should notice a major change in Karter over the next while. Already, the change we have noticed in his reflux is astounding. So we are excited to see what will come of the changes we will be making in Karter's diet. Miraculous really!

Amazingly, it is expected that Karter will outgrow these allergies within a couple of years. So I guess that feeling I had inside about something not being quite right...well I guess it was right. I am so thankful for that still small voice inside!

Friday, January 18, 2008

Randomness....

BATH SEAT:

We were blessed with a great bath seat for Karter. The Fullerton's gave us a seat that their son had grown out of. Because Karter is unable to sit on his own, it has proved to be a bit of a challenge when trying to bath him. Because he is so long, he does not fit in a baby tub so we have been lying him on his back in the big tub. Needless to say you can't put much water in the tub and he really does not enjoy his bath so much as he gets cold really easy.

I took a few shots of the seat and him in it and included them here.




SOME FUN:

Karter and I had some fun taking pictures the other day. Karter is now 18 months old. (my how time flies) and I thought it would be nice to capture him as he is today. So here are a few shots of that.





AN ANSWER TO PRAYER:
As I had mentioned in the previous post, we were looking for someone to come in and do some intensive therapy with Karter throughout the week. Therapy in addition to what we try to get to on a daily basis. Since the last post, some really neat things have happened. First off, our Physiotherapist agreed to see Karter 2x per week until the end of February (at which time she we re-evaluate if it will continue or not). Secondly, the physiotherapist mentioned that they had "physio aids" at the Centre for Child Development (right by the hospital). She said if I was willing to bring Karter there, the aid would be able to work with Karter during the week as well (the aid needs to be supervised by a trained therapist at all times). So right there that gives Karter the possibility of receiving therapy three times per week. In addition to all of that, I have a colleague who I had worked with formerly in Delta that has volunteered to come and carry out Karter's therapy on Friday's. This is something she has felt in her heart that she would like to do as a ministry basis, without pay. Needless to say, we are overwhelmed. So not only have things quickly fallen into place with his therapy schedule but also the stress of finding the money to cover the therapy has thus far been relieved as all the service are funded for. We are still looking into funding for the future however, this has bought us a bit of time to be able to get the paperwork completed.

AMEN!

Wednesday, January 9, 2008

WEDNESDAY

Well the day begun with a visit from Sandy, our physiotherapist, at 9am. We have not seen Sandy since late November. We had a great visit. She worked again on rolling and sitting and gave me a few things to focus on with him. She was pleased with his strength and still maintains that he is moving forward. She commented today for the first time, that she sees motivation starting to develop in him. This is something that will really help him to reach his goals. She was very happy about that and felt it was something to take advantage of. She has agreed to see Karter twice a week until the end of February to see if that will help. We will re-evaluate at that time. What an answer to prayer that is! According to our IDP consultant, this is not a normal amount of therapy to receive.

I discussed with Sandy our desire to do some intensive therapy with Karter. As suggested by the neurology nurse, I asked her opinion on whether or not she felt that was of benefit to Karter or not. Her response to my questions was that she felt that having a trained physiotherapist come in say three times a week for an hour each time might not necessarily make a difference. The reason being, what is important is not what she does for the one hour each time but rather the 23 other hours in the day. Good point I thought. Her suggestion, which goes in line with our thoughts, was that we have someone come in and do his therapy with him (a program that she would set up and train someone to do) various time throughout the week. This would alleviate me from the guilt of "not doing enough" and ensure that each week he is getting focused therapy in significant doses. She suggested nursing student from Trinity or an ECE student, even a physio student. So I am looking into that, I already have a call in to Trinity. Really, it could be anyone who is interested in being trained by Sandy, and just basically playing with him (in a focused way) for an hour each day.

Our visit to Children's was a good. We met with Dr Conoly, the epileptologist and Dr. Steinbok, the surgeon. The first thing that they said was that they felt that Karter was not having enough seizures at this time to warrant any more surgery. We were pleased to hear that we would not need to make any decisions surrounding that at this time. About 8 months or so ago, they had mentioned to us the thought that there was a likelyhood that if part of Karter's brain had developed abnormally, there was a good chance that another part could do the same. So basically, there was speculation that there could be abnormality in other places other than just the right front lobe. Today they confirmed that. On his last EEG and MRI, they could see activity and abnormality somewhere around the back or middle part of his brain. At this point it is hard to pinpoint exactly where it is but they have said it not causing seizures and really is of not real harm to him, however it could help in explaining why his development has not picked up as much as we had hoped since surgery. Interestingly enough, this was not difficult to hear, nor a devastating blow for us. I suppose we were prepared for the possibility.

The response from Dr. Conly about Karter was very positive. She was pleased with the gains he has made, however small, and commented a lot about how he was communicating socially. She actually said that to them, this is far more important that the gains in motor development. So that was great for us to hear.

They are going to decrease one of Karter's meds over the next three months until he is completely off of it. They would like him off of it as it may increase his reflux and also attribute to his low tone. In the meantime, if we see an increase in seizure activity, we will add another (new to the market) med.

Karter's growth has been of some concern over the last few visits. Today they expressed concern again over the rate of growth of his head. Your head grows when your brain grows and your brain grows as it develops. Karter's has fallen well below the line of normal. So they did a skull x-ray today to make sure that the plates in his head have not fused prematurely, hindering the gorwth of the brain. This is most likely not the case for Karter, but they wanted to rule it out anyway. Most likely it is closely linked with his slow rate of development. We will watch it very closely over the next while.

So at this point, the treatment is to manipulate his meds a bit and go full force with therapy. The doctors agreed that this is the time to do so. Kurt and I feel very good about today's appointment. We both felt that before even considering the idea of surgery we wanted to experiment with some new meds and also we wanted to give it more time to see truly what was going to happen with his development. We feel like the doctors are not giving up but rather making sure that they do not act hastily in their treatment for Karter. The surgeon mentioned that "there is only so much brain we can take out" even though we chuckled, we got the drift of what he was saying and we appreciate the approach they are taking. So all in all we feel good about today and we are motivated to move ahead.

Please pray that as we look into different area of funding and different approaches to therapy that we make the right decisions for Karter and that things happen fast and in our favor. Thanks for your prayers.