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!