Wednesday's "Dis"-Appointment at Children's

Kurt and I took Karter to his first post surgery appointment on Wednesday afternoon. We were scheduled to meet with Karter's Neurosurgeon and Neurologist for a three month follow up visit. It was more like a two month check up as they are on holidays over the next while. Finally, after waiting over an hour we see Dr. Steinbok and Connoly.

If I am to be honest, I would tell you that we were so excited for this appointment because we felt that for the first time in almost a year we had something to celebrate...Karter's progress! We have never been to Children's Hospital on a positive note, rather every time we go it is bad news or for a negative reason. We are so happy with the progress we had made this far and we wanted them to see that too. Karter has had two incidents that had seizure characteristics since surgery, however as I have mentioned before, they told us that was normal in the first three months.

If I was to sum up the appointment in a nutshell, Dr.Connoly, the neurologist was hoping that Karter would have progressed a bit further already. She had hoped that he would be rolling over completely both ways and that he would be reaching and grabbing for objects by now. Basically, she wants to do another EEG to make sure that there is no seizure activity that we are not seeing. If they do not find anything on that EEG they may take Karter into hospital overnight and do a 24 hour EEG. If nothing shows up there, we move forward. If they do find something on the EEG that is abnormal they will do another MRI and take another look at the area of his brain. If this shows more abnormality that causes seizures, they do more surgery. I am not sure if we told you this, but right before they did surgery, they told us that there were other areas that looked suspiciously abnormal however, they could not conclude with the clinical testing that those areas were causing the seizures, so they left them and were Conservative with their removal in surgery. The thought was that you can always take more but you cannot ever put back what you have taken. The area of concern extends down into his motor cortex and so they didn't want to not touch that area if the didn't need to.

So to sum it up for us...it was a bit of a blow. We really believed that we had closed the door to the worst of Karter's illness. It is still extremely possible that we have however, we were not prepared to have that news the other day.

So where does that leave us? Well, once again we wait. We should hear about the EEG appointment on Tuesday, I think it will be within the next week or so. Then we wait on those results. Depending on the results, we then choose our course of action.

If I am to be honest, I told Kurt the night before the appointment that my worst fear was that he was not going to be as far in development as the had hoped and that they would deem surgery unsuccessful. In our minds no matter what Karter is doing far better today than any day before surgery, so thus far, we are successful. However, even though I spoke those fearful words to Kurt, my heart was not prepared nor did I believe that they would be true, so I am still reeling from that. This I think has been one of the hardest parts of the journey for me. I do not want to sit and accept defeat, but I do feel like mustering up the strength to be strong is not coming as easy as it has in the past.

So once again we ask you to pray for us. This roller coaster ride is taking a huge toll on us and honestly we want off. More than ever before, we need your prayers for strength. Strength for the day to day things like caring for Paige and keeping life "normal" for her. Strength to keep up with Karter's schedule in way of therapy and doctors appointments. Strength and peace to handle all the emotions that surround this. Ultimately, we need prayer for healing. I don't want to do this anymore, it needs to be finished so that we can move on with our lives.

One last note. Would you please pray for us for wisdom. Our plan was for me to go "back to work" so to speak in September. Things are really tight without the extra income I make doing daycare here at home. Kurt and I have been wrestling with what to do in the fall. It is hard with all Karter's appointments to fit "a job" in, however we are praying for something that just works with our schedule. Now this new development makes the decision of "what to do?" more complicated. In March I stopped doing daycare because the the erratic pace of our lives at that point. The not knowing what was happening each week was too much. And to have to worry about finding care for not only Paige, but two others if I was in the hospital with Karter, was too much of a stress on me and everyone else here. So please pray for wisdom and we make the decisions regrading our finance etc. Also, pray that the right "job" would come along. Something that I could do from my computer at home 10-15 hours a week even could work, whatever, please just join with us in prayer as we make these tough choices of what to do.