Appointments

It's strange I knew January was going to be kind of a marathon month; doctor's appointments every week, all at least 30 minutes away most even more, in addition to his normal therapy appointments. I did not really expect to be as stressed about the whole process as I am. I remained relatively calm throughout the hospital visit and weeks leading up to the appointments. I had surprised myself in fact as I tend to worry to much so I was actually proud of how together I had been.  So its coming as somewhat of a shock that I'm stressed.

But lately I find myself more stressed. Usually I'm fine on days I have to work and then when my work week (which ends Wednesday) is over the stress kicks it. I can feel it in my body and I don't sleep well. I generally think I have a stressful job so it seems crazy for me to have my home life more stressful then my work life.

Tomorrow is Conor's appointment with the White Matter Neurologist (apparently neurology is not enough of a specialty..Grey's Anatomy never informed me of this!). I'm looking forward to this as I have sooo many questions to ask especially  after  the appointment last week with the neurologist. According to the neurologist we saw last week the "spots" they found in his MRI are actually scarring in his white matter. She mentioned that the scarring actually explained some of Conor's delays because he has to for new connections because the normal ones don't all work. I was somewhat caught off guard by this explanation so I did not ask much to clarify it. I also was planning on learning more about this during tomorrow's appointment so I had other issues to speak with the doctor about last week so I lack much clarification on this. This all makes things make sense to me as I always felt like a lot of Conor's shortfalls were a processing issue. I guess this confirms that.

This doctor informed me that she felt Conor's bizarre behavior was self stimulation which I was still uncomfortable with as an explanation. I'm mostly uncomfortable because nobody can give me a good explanation for why he would be doing that and since they didn't catch it on the EEG I would just feel more comfortable knowing for sure that they are not seizures.  The doctor agreed to another EEG however since it did not occur the first time. So we have to figure out the details of doing that around these other appointments as well.

All of this made me feel better for a while. I focused on the positives like the fact that while something is wrong with his brain its not fatal. He's young and his brain is more malleable and it will therefore be easier for him to overcome some of these issues. And at least we have some answers though we need more.

But the past couple of days I've had a harder time focusing on the positive because I've been angry. The only thing they can guess caused this for Conor was that something must have happened when I was pregnant (like an infection). So I get angry, Angry that all these people who don't follow the rules when they are pregnant have babies with no problems. Angry that I followed the rules while I was pregnant because even when people would say oh one drink occasionally is alright I never had any because it was not worth the risk. Angry that I would have people tell me "oh it doesn't really do anything my (insert person here) did it when she was pregnant" when I would say I would prefer they not smoke around me.

The emotions always come in spurts, it has since the beginning of all of this months ago. I'll be handling things well and then I get to a point where it gets upsetting. When we first started noticing there was something not right I would get very upset when I would see Conor with kids his age or younger. It would feel like a slap in the face when younger kids could do things Conor couldn't. But I got over that. So I'll get over this too.

I know that I am so totally blessed to have Conor. And I know that I am extremely fortunate that he is such a well-behaved and easy kid. And I need to continue to try and focus on these so I can be positive because one of the things I love most about him is how incredibly happy he is. And I don't want him to ever lose that even if things are more challenging for him then I would like them to be.

So in keping with positivity I will hope and pray that there will be positive answers to my questions tomorrow. And that driving to DC for an 8:30am appointment comes with minimal rush hour traffic!