Friday, January 30, 2009

Know His Power In Quietness and Trust....

I have shared with a few of you this week that this is one of the first times that I have felt weary in this journey. Weary in the physical sense as well as emotionally. The idea of entering another year where things are completely up in the air is really hard. Gearing up to go once again to Children's felt a bit overwhelming, but it was something we knew we needed to do in order to move forward in Karter's treatment.

So Karter and I ventured out to Children's Hospital this morning at 7:30 am. This was a bit of a stretch for both of us and we usually do not rise until close to 8. It was obvious however that we were bathed in prayer. I felt a real peace as I drove into town. The highway traffic fairly clear, the sun shining, my little guy chatting away and laughing in the back seat. For this first time all week I felt lighthearted again.

We arrived at the hospital about 20 minutes early, which gave me time to give Karter his milk and just hang in the van tickling him and hearing him giggle (which is just about the best thing in the world). Just before it was time to get organized to go inside, this song came on. It has been my anthem since almost day one of this journey. How fitting it was, what 'God-timing'. Just another reminder that we are not forgotten.

So with that song in my heart, we went in for our EEG at 9am. Karter was hooked up and ready to go by 9:30. I fed him breakfast and then stepped out at 10am to grab a Starbucks. I came back 10 minutes later and the tech said "Well, I think we can stop now, I got what I need". While I was gone he had a cluster of seizures that gave her all the information that she needed. By the time they unhooked Karter and washed him up, we were gone by 10:30. Our appointment was to go until noon. So you can imagine, I was pretty excited! The least amount of time we have to spend there, the better. Thanks God!

It always amazes me that when we can admit, "Ok God, I can do no more on my own strength, I am weary" how He honors our honesty. I have been encouraged a number of times this weeks by a kind gesture, heartfelt words and God breathed moments. Even last night, I had someone ask us if there was anything they could do to help out with the expenses and needs Karter may have - that generous hearts response blew me out of the water! I thought about it for a minute and was able to let that they know that because of God's provision, there is nothing right now that Karter lacks. WOW - how many people can say that? We are well taken care of, we are provided for, we are blessed. Even in our darker times, He is there. We just need to remember that we receive power when we quiet ourselves to listen and to trust.

We will not hear anything about the results until our Doctor is back from holidays and can read the EEG. I will update you at that time. I just wanted to share with you about the morning and about how I was really encouraged.

Here are the lyrics to that song:

Still - Reuben Morgan

Hide me now
Under your wings
Cover me
Within Your mighty hands

When the oceans rise and thunders roar
I will soar with You, above the storm
Father, You are king over the flood
I will be still and know You are God

Find rest my soul, in Christ alone
Know His power, in quietness and trust

Wednesday, January 28, 2009

Seizures and an EEG

I just wanted to take a bit of time and give you a little update on the things that are happening right now.

Over the last few weeks, Karter has begun to have a new type of seizure. The nurse at Children's suspects that they are tonic seizures, which are much like the spasms he had when he was 5 months old. After 18 months, in most cases, the spasms change. This could be what we are seeing.

I notice the seizures most during feeding times. This could be because he is sitting up, which makes them more noticeable. When Karter has a seizure he will bend in the midsection for a second and then return to what he was doing the moment before. I can tell by his eyes and the force of the bending at the waist that it is a seizure. I have now seen enough of them to recognize even the slightest abnormal movements.

Although these seizures do not last a long time or take a lot out of Karter, the unfortunate thing about them is that he can hit his head on the tray or toy that is in front of him, this has happened a couple of times. I feel so bad for him; he has had a couple of good bumps on the head.

We have been pushing for an EEG so that we can see what area these seizures are coming from. As in the past, Karter’s seizures have been localized to the right frontal lobe. That was the area where his surgery was done when he was ten months old. At our last appointment, the neurologist did confirm that there was still a fairly extensive area in that right frontal lobe that appeared abnormal. In theory, it would make sense that the seizures would be still coming from that area. There is a chance however, that the seizures are a bit more global (all over the brain). This is a speculation due to the fact that his development is globally delayed.

Our neurologist is on holidays right now, however she did call in today and the neurology nurse did tell her about Karter’s seizures. The neurologist does want to see if we can capture them through EEG. We will be going on Friday at 9am for a 3 hour EEG appointment. They need to capture about 3 episodes in order to have the concrete documentation they need.

Ideally, if they capture the 3 seizures that they need, the neurologist will look at the findings and will determine what the course of treatment will be. In the meantime, they have slightly increased one of Karter’s meds so that he is not seizing so much throughout the day.

I honestly don’t really know how to ask you to pray. I just want answers. If the seizures are still in the right frontal lobe, as in the past, I suppose my hope is that we can move forward with the possible option of more surgery or at least start chatting about the possibility. It would be nice to either rule it out completely or move forward with it. The unstable back and forth makes it so hard to keep life moving. Please pray that we get the answers we need and whatever the best treatment for Karter would be presented and started quickly. The unknown wears us out really quickly, so please also pray for added strength.

I will most likely not have an results until early next week, when our neurologist is back from holidays and has some time to review the EEG. When I find something out, I will update.

Saturday, January 24, 2009

The shattering process

I am posting this duplicate post from our family blog as I realize we have different readers. But I thought this post fit her as well.

Over the past months and years, I have watch those close to me walk the path of grieving. I myself have also walked this road. Whatever the circumstance; the loss of a child or a family member, the ending of a marriage, financial hardship, the illness of a family member or any other thing that has rocked the stable foundation of life, grief is always part of that process.

It always interests me the things we find ourselves talking about with people. Over the past two weeks, I have had the same conversation with three women; it feels like there is a theme in life right now. The idea that dealing with grief is a journey and in order to get to the other side of it, you must come to grips with the shattered dreams that lay so obviously at our feet.

I have used this same example many times. From the moment a women find out she is going to have a child, she makes plans, she dreams, she envisions what her life will look like from the second the sunrises on the day of her due date. She pictures the first Christmas, the first birthday, graduation, family vacations and many other momentous occasions that will happen throughout life. The same thing happens when you become engaged, start a new job etc. Whatever the life altering event may be you plan and think about what it will look like.

Then as life will be, there are things that happen along the way that may sever that event or alter it slightly or even more severely. The loss of a child, a divorce, being fired from a job, not being able to conceive etc.; all those things are harsh blows to the way it should have been and leaving you in a place of real grieving. And although it is just ‘part of life’, it still is something we walk through. Yes, we can all say it is a character building experience, but truly when it all has been stripped away and if we were to be completely honest, it feels unfair, harsh and unjust.

As I have been thinking about my own journey and really pondering what process I have been walking through, I have realized that there were some really pivotal things that I had to walk through. The first; everyone grieves differently. Some do it quickly and logically, some take a lot of time and methodically work through every possible emotion. Some grieve publicly, some privately; some share with many and some with just a few. You may be a combination of some of these you may not grieve at all like this. Whatever the case, the way you grieve is right for you. There is no right or wrong way because grief is based on emotion.
Secondly, you need to come to place of acceptance to be able to move forward. In saying that, I in no way mean you forget about it or pretend it did not happen. You just come to place where you are no longer numb by the pure thought of it. That you can say “this happened and although I do not like it, I can accept it and choose to move forward from it”

Thirdly, and for me one of the most important in my journey, has been to deal with the shattered dreams. To take all those ‘the way it should have been’ thoughts and all the ideas about ‘if this would not have happened then...’ and be able to set them aside accepting the fact that they never will be as I may have thought or hoped. It sounds harsh in a way, but I can honestly say it has been really healing and freeing for me. I am no longer living in the past but rather, now I was giving myself the opportunity to build new dreams in my heart; new hopes, new things to believe for and live for. By accepting my reality, it doesn’t mean I no longer stand firm in my belief for a miracle. I am just giving myself a chance to live in the present and be thankful rather than in the past and be disappointed.
I read something really beautiful about a year ago, something that really changed me. It was the journey of a mom who had lost her child three days after she was born. She had known the child was ill and was told that she we not live or take a breath. The family believed for a miracle and they received three of the most precious days with their little girl before she joined Jesus in heaven.
I continued to follow her journey of grief after burying her daughter. This woman was well grounded in the Lord, she was well supported by family and friends but that did not make her personal grieve any less. At a counselling session, her counsellor told her to buy or find a piece of pottery that well represented her and to smash it. After smashing it, she was to then put the pieces back together.
The woman chose a colourful water vase and one day while she had some alone time, she took it outside and smashed it. She then took the pieces and glued them back together. A few hours later, and not without cut or gluey fingers, there before her stood the ‘new’ water vase. Although it resembled the same shape as before, there were lines and cracks that were visible to the eye, there were pieces missing however; there were also pieces that remained unscathed, they were not chipped or broken in the shattering process.

The women took her vase to her counsellor the next time and showed her masterpiece-of-sorts, still not really sure what the full meaning of it was. Although it felt great to put it back together, she did not fully understand why she was told to do this. The counsellor told her that the vase represented her journey. Before the loss of her daughter, her life was like the unbroken vase, colourful and well put together. Then she lost her daughter and life fell apart – thus the smashing of the vase. The gluing together of the pieces was the process of grieving. And the finished product, although it looked the same, was still different. There were pieces that were missing – like her daughter from her life. There were cracks and lines, which represented the journey to put it all together. There were pieces that remained stable – like her family relationships, her relationship with the Lord etc. It was not to say that her life way all back together and it was over, there was still a journey, but what a powerful thing to have to remind her. The vase sits on her dining room table with flowers in it as a daily reminder.
That story really impacted me. I realized that as I continue to put the pieces together, part of me remains constant, other parts look different and some parts are missing. All those pieces add up to make a whole new person; one that ‘The Potter’ our Heavenly Father is pleased with and a person that I am pleased with too. I have not arrived nor have I finished the refining process, but my faithful Father has hovered near me this whole time, acting as my glue, gently helping me to piece it all together. “He is near to the broken hearted and He comforts those who mourn” - paraphrase - Psalm 147:3

Thursday, January 15, 2009

Karter's 1st Riding Therapy

The long anticipated day has arrived, Karter started riding this morning. I have to tell you that as my little boy mounted that horse and they led him out of the mounting area, tears welled in my eyes. I was so excited for him! Not only is this an amazing opportunity of therapy, but for the first time, he has an activity to go to that is for him and not his sister or anyone else. I am not sure I can truly express the feelings.

PRD (Pacific Riding For The Disabled)has an amazing staff and numerous volunteers. They put Karter on the horse with a brace that went around his waist to support his body. Then they led him him around the arena, holding his arms so that he did not lose his balance. It was hard work, he had to keep his head from lagging as the horse bounced up and down, this was a lot of work.

He did really well, he lasted about 20 minutes. I did not hear much complaining, a little at the end when he became tired. Sandy, Karter's therapist (she is there during his lesson) said they start the kids at about 15-20 minutes the first few times, so we were thrilled with how long he lasted.

Some really great news...we thought that the cost was $300/10 weeks, but when we went to pay, they told us it was $225. Karter has received a lot of donations to go towards his riding for his birthday and as gifts from those who felt led. With the $75 savings each time, he will now have enough money to cover 4 sessions instead of 3...we are so thankful for that!

Here are a some of the pictures from today. I will try and post some video in another post. Karter will go each Thursday morning for a half hour. This block is 10weeks long. Stay tuned, I am sure this will not be the last time you see pictures and posts about riding.



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Monday, January 5, 2009

The snow is making me crazy....

This morning we were scheduled or shall I say re-scheduled for Karter's prolonged EEG. I woke this morning to yet another night of snowfall. I listened to the radio only to confirm what I thought when I looked out my window - it was chaos on the roads.

I called Children's to see what we could do. There was no way we were going to get in for 9:30. I had already rearranged our schedules to make today work. They agreed to let us come in at 1:00 and hook Karter up at that time. Due to some unforeseen circumstances, Kurt ended up taking Karter in and staying with him through the day. I visited at dinner and left around 9 as Kurt was staying through the night.

Karter did not sleep well today, he catnapped for about 20 minutes - most likely due to the fact that he has to sleep with the lights on, due to the video monitoring that goes along with this test. Kurt just called to say that Karter had fallen asleep for about an hour and then woke up and is now very upset. It could be a tough night for both of them, so if you read this still tonight, please pray that they will both settle in for a peaceful nights sleep and that Kurt will have the strength to sustain him through the night.

Because of the late arrival, we did not see the dietitian or Dr. Conolly. I will keep you posted on any results we get over the next week or so.

Sunday, January 4, 2009

Out with one year an in with another....

My how time flies. I cannot believe that 2008 has passed so quickly. I thought I should update you with a few things that have been happening around here.

First off, we never made it to our overnight at Children's on the 23rd, the enormous snowfall kept us off the roads that morning. The appointment has been rescheduled for tomorrow, the 5th at 9:30 am. We will stay overnight and should be home by 9 am on Tuesday. I will stay through the day and do the appointments and Kurt will stay through the night. He is such a better sleeper than I am and he can sleep through anything.

Christmas was great, Karter was spoiled as usual. I have included a few cute pics of the holiday events. Karter got bedding from Kurt's parents for this new big boy bed. My parents got him riding chaps, boots and a cute little hat(although it completed the outfit, but he will have to wear a helmet during the lesson). Kurt and I and many others got him various clothes and other toys that will aid him this year. He is a very lucky little boy. It was fun this year to see him really enjoy the festivities. He loved the gifts, the people (so much so that we would not sleep on Christmas Day) and just took it all in and enjoyed himself.

Christmas Eve:

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Christmas Day:


I have started to introduce 'allergic' foods back into Karter's diet. It has been a full year since we took him off the wheat, dairy, pork and various other foods that tested as allergic foods for Karter. We have chosen to so this at the prompting of Karter's neurologist. Because he is very low in weight, they feel that we really need to be diligent in trying to pack on the weight for him. If we cannot get him to gain weight, there is the possibility of having to look at alternative feeding methods. This is something I am extremely apposed to. So I take very seriously the idea of trying to find ways to get the weight on his little frame. I will meet with a dietitian on Monday while we are at Children's. I am hoping she can give me some really good tips and pointers on how to do this.

Both Karter and Paige have been sick this week. Karter does seems to have a bit of reflux that has returned. I am keeping a close eye on it to see if it is cold related or food related. As I mentioned before, I did re-introduce dairy back and that is what contributed to his relfux the last time. It is extremely possible that this is just a cold related incident, we usually see the reflux rear its ugly head while he is sick. He is back on his nebulizer and I have him on antibiotics right now to clear up the lungs. He has had pneumonia twice in the past and we do not want to revisit that again. Cold and flu season is upon us, it is something everyone seems to struggle with, so we chalk it up as normal childhood events and get through it like everyone else.

One last thing to mention...we received word that Karter has qualified to receive respite dollars. This is part of the government's assistance for families who have children with special needs. We have chosen to use the money to bring someone in a couple hours each week to work with Karter and do his physio routine with him. This is something that I struggle to find time to do each week, and it is such a frustration for me. This person would be like a personal trainer for him. Someone to help him through his workout and help him continue to gain strength and learn new skills. Because Karter has such a great temperament and his needs are not such that they keep us up through the night or take us beyond ourselves, we really do not feel the need to "send" him to be cared for outside of our home. So the idea of bringing someone in to help us really works for us and I think will really help him as well.

I am really looking forward to this year. Karter will start riding this week (Thursday at 10 am) and we have decided to go through with registering him for preschool starting two days a week in September. He will have an aid to assist him in the classroom, so it will be like 5 hours of play therapy each week.

Who knows what this year will hold for our little guy, but we have BIG expectations. With the idea of possible further surgery, with the addition of riding therapy, a 'personal trainer', preschool and various other ongoing therapies, this year shapes up to be a very promising one. Over all of that is our continued faith that God is in control. He knows the day, the hour, the very moment when Karter will meet each incremental step in development. He has Karter's life in His hands. We stand daily on the promise that Karter will be healed. Although there are times that we sit and say "when God, it has been so long?" He gently reminds us, that He has it taken care of. Our job is to just live each day in faith and expectancy for what He will do. The time may go by, but there is not a point where we will give up. We may have to wait a day or it may be years, whatever the case, we will wait, we will believe, we will overcome.