Friday, January 18, 2008



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.


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.

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.


Wednesday, January 9, 2008


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.

Tuesday, January 8, 2008

Welcome 2008!

I am so looking forward to 2008! I think I mentioned in a previous post, 2008 has been deemed the year of "reclaiming what has been lost". Kurt and I have a real fire in us to go full steam ahead on Karter's behalf. We have decided to pursue the idea of intensive therapy for Karter. He has been receiving therapy two to three times per month, but we are looking into something a bit more regular and intensive for him. If we do pursue this, we will most likely have to find a way to come up with the funds to do this on our own. Please pray with us as we seek out this avenue. We want the right person for Karter as well as we need to be creative about how we fund the therapy. I am looking into some charity's that give grants to families and will start filling out applications as soon as my research is complete.

We have an appointment at Children's hospital tomorrow at 3:20. We will be meeting with Dr's Conoly and Steinbok. They will be seeing Karter right after a Neurology conference focused on him. His case will be brought to two other neurologists for consult. His last EEG and MRI will be discussed as well as recommendation made for future treatments, the possibility of surgery included.

I feel both excited and anxious about the appointment. As time moves on, I find myself not as scared about the possibility of a grim report. It seems that time has been a real source of comfort for me. Time to process the "what ifs", "worst case scenarios" and future outcomes for Karter. Don't get me wrong, I am not giving up and saying "this is as good as it gets" but I do feel like if Karter's normal looks a bit different than Paige's normal, that is ok. We will walk out each day aiming to push Karter to the best he can be and we will work to provide the best therapy and medical attention that we can. But in the end, God is still in control and He knows the ultimate plan for Karter's life.

We continue to walk out each day living in the joy of the blessings that it may bring. Karter is doing well. He is moving forward, maybe not as fast as we would have hoped, but we continue to notice new things all the time.

So tomorrow is a BIG day for us. We feel like it is the day where we will receive word about what is really going on with Karter's Epilepsy and what is happening in his brain, post surgery. Kurtis and I will be privy to his last MRI. The surgeon will show that to us and go through it with us. I am looking forward to that. We assume that the discussion will come up about further surgery and we will voice our questions about that and hopefully get answers that will help us make a well informed decision about whether to go ahead with it or not, if that is a possible treatment option for Karter.

We will also discuss with them our intent for intensive therapy. They may have something they can offer us that would not cost us money out of pocket. Also, we are wanting their take on whether or not more therapy is something that is of significant worth for Karter. We are hoping that tomorrows appointment will give us a starting place for the year.

My hope is that this is the year we can exhaust every medical possibility for Karter. That we can get a handle on his condition and get him on a road to recovery. By January of 2009, my hope is that our visits to Children's will be merely routine check ups to revel in how well he is doing.

We continue to leave room for God to work in Karter's little life. We have not walked this journey without God so closely walking beside us and without His gracious hand comforting and guiding us. For that...we are SO thankful.

I will update as soon as I can after returning from Children's, most likely not until Thursday though. Please continue to keep us in your prayers. We love and care for all of you and depend on your support daily.