First Appointtment with the Psychiatrist

We saw the psychiatrist at Children's Hospital last week Wednesday. It was an hour and a half of questions with a follow-up appointment shceduled on January 20.

We have no real answers yet, but I know it will be a lot of trial and error.

So far: When I was asked what I wanted out of this process, I said that I just want to understand what is going on, then go from there.

When I asked her (Dr. Chapman) what she thought so far, she said there definitely was an anxiety component, but with Mason's seizures, other meds, behaviours, etc it is very complex. They will be evaluating everything and hopefully have some answers next time. Most likely Mason will be officially diagnosed with anxiety disorder.

In the mean time, she said I could try different times and doses of the Risperidal. So I've given some during the day instead of bedtime. We have seen less anxiety during the day. We have also seen a big increase in seizures. He had an increase in night seizures when we started this medication, but they seemed to settle a bit after a while. So I'm just going to wait it out and hope the seizures lessen.

As Mason continues to develop cognitively and in speech, he is also much more aware of his seizures. They have been upsetting and frightening him in the last couple of months. I feel so sad for him, especially when he has several seizures within a short period.

So how is this affecting the family? It's not been easy. In fact, it's been more difficult than it has been in several years. For myself, I have become quite accustomed to figuring out what is going on in regards to seizures and seizure medications. I understand that stuff. Anxiety is a whole new ball game. It feels like I've stepped off the bottom step without a floor to step on to. Just waiting for my foot to hit something solid. Dealing with the extreme behaviours, aggression, screaming, and stubborn defiance takes a lot more of my time and energy, which will, of course, take that away from the girls and Daryl making balance in our family difficult to acheive. Thankfully the girls are at an age of being able to reason, so we can talk things through. And Asia made tacos for supper tonight, which was a treat!! Beats what I would have made: crackers and cheese again!!

Good things:
- Mason is going to bed easier again
- For the last two nights he has settled quickly when he wakes at night
- Mason even slept through the night once and woke up without having soaked the bed for the first time in nearly a year!
- Some easier daytime behaviours
- Did I say Asia made supper?!?!

Difficult things:
- Sleep deprivation for me which does a number on my memory and energy, as well as my health.
- Mason waking every night, sometimes multiple times, (except that one night!)
- Mason soaks the bed every night. So I have to change him and his bedding in the middle of the night. I prefer sleep, thank you very much!
- He's not progressing in potty training, although his teacher at school is determined to do it. She's amazing!!!
- I have more frequent days that I "crash". Overwhelmed by it all.

In spite of all this, we are thrilled over and over by what Mason is saying and understanding. He's been putting together a string of words into sentences many times per day. Not all the words are understandable, but often we know what he is saying! Today, as Daryl was getting ready for bed, Mason said, "Papa" as he was removing his shirt. Daryl commented, " did you wear your shirt to Grandpa's?". Mason said, "No, gift". He was wearing the shirt he got for Christmas from Grandpa and Grandma! His memory is sharp. He knows what's coming up next in every episode of Mickey Mouse Clubhouse on TV. They do a lot of counting on that show, yet, that concept has not yet registered with Mason. Along with the toilet training.

Mason desperately wanted to open gifts before Christmas. He would sit down with a gift on his lap, finger positioned in a little gap, face looking up at us eagerly. Heartbreak when we said no. So one day I asked him if his name was on the gift. I pointed at the name and he said the correct name. Although he cannot read (he can't even say his own name), he does recognize his sisters' names and mommy and daddy. He seemed to understand these were not his gifts. The next gift we looked at said to Shirley from Asia (she's 14 and gives us some occasional attitude... LOL). Mason looked at my name and said "Mommy". That was a shock. We are convinced over and over that Mason understands much more than we realize. It appears that there are areas of his brain that are functioning well, and others minimally. I wish the toilet training part of his brain would work!!! Please!!!!! At least all his diapers, bed pads, wipes etc are provided. :)

Well, off I go. Thanks for listening. And I know that God does, too. I've been asking and begging for long dry nights, and He's given me one, plus others that are more manageable. Will you continue to join me in this? Thanks!!