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.
