Saturday, April 12, 2014

EEG and MRI Results

Late Wednesday night (later than I had planned!) I grabbed Preston and we headed off for his MRI and his 23 hour EEG.

We drove and stayed at a hotel that was about 10 minutes away from the hospital. We decided it would be easier than me trying to drive there the morning of and freaking out on the road, which is what would have happened.

The price was right on the hotel, but the skeeve factor was off the charts. We settled in at about 11:00 pm and went to sleep.

Needless to say, I didn't sleep well. I woke up just about every hour. Anyhow, grabbing everything and checking out went pretty smoothly and we were off.

I managed to find everything okay at the hospital, and I may have even been on time. I took advantage of the free valet parking, and then it was more waiting.

Preston was given some Versed around 9:30 am and then he was wheeled off for the MRI. I waited in the waiting room and inhaled a few muffins, because I hadn't eaten breakfast (since Preston hadn't either, I thought it would be mean to try to eat in front of him or to sneak food). A couple of times someone stopped by to let me know things were going well.

And then, he was done and I got to see him in recovery. He already had his EEG leads on him. It took a while for him to wake up, and once that happened we went up to his room.

He fell back asleep and so did I. Then, Child Life Services woke us up to see if he wanted to play. Umm, no. Later, when I wanted their help, they were gone for the day.

He drank some OJ and ate some chicken nuggets and promptly threw up. The nurse took her sweet time in helping, so he was already all clean by the time she showed up. Fortunately, I had caught much of it in the fun puke bucket. He then promptly ate a muffin and drank some water.

It got a little rough at 7:00 pm, because he was very energetic and it was hard to follow him around with the leads and everything. By 8:00 I was exhausted and he was getting his second wind. I turned down the lights by 8:45 and prayed he'd sleep. Not quite. He finally fell asleep at 10:45, and I was asleep soon after. He had a very restless sleep, and was tossing and turning and I had to keep getting up to fix his leads so he didn't get tangled in them.

He woke up at 5:45. Nooooo! He did fall back asleep, except he knocked a few leads loose, so someone came in to fix them. So, he then was up and that was it.

After breakfast we had Child Life come in and play with him while I showered. He did very well with them and had lots of fun playing.

Then, it was about another hour of trying to keep him entertained till it was time to take the leads off. He was very uncomfortable and kept scratching at two of the leads.

Then, they came in and did some fun things with a stroke light and a pinwheel. And then the leads were removed. We packed up and headed for his appointment with Dr. Smith to discuss the results.

Basically, no abnormalities were found in the MRI and the EEG was good. So, there was no structural reason we shouldn't see great continued progress. He said that he didn't see why Preston wouldn't be in-line with his neurotypical peers by kindergarten. Which is what I have always said! So, it was wonderful to have a doctor's confirmation of that thought. And it was nice to think I wasn't being overly optimistic or unrealistic.

I finally feel like we can put this issue to rest. We will continue to have yearly appointments and we will keep an eye out for puberty, which is when some kids start to have seizure issues.

All in all, Preston did really well. The nurses thought he was absolutely cute and he was quite cooperative and tolerant of everything they did.

I have to say, I highly recommend Rush and St. Alexius for their seizure/epilepsy program. Their facilities looked top-notch and everyone was very pleasant to deal with. And again, I have to say how much I liked Dr. Smith. I am very happy - not just with the outcome, but the entire process.

And yay - no issues for Preston! We will keep doing what we're doing. I'm so incredibly proud of my little dude for all he goes through. I have the best son in the world.

Tuesday, April 1, 2014

Where we are

My last post was pretty much a downer, so let's get that knocked off the top of page, and have this one get top billing.

Preston's EEG and MRI was rescheduled. I was starting to get quite anxious about it, so that was good for me and for my ulcers. Ha. Anyhow, he will have the MRI and EEG on the 10th of April, and then we will hang around there and get the results and meet with the doctor a few hours later. I think this will work better than two separate trips. So, hooray for that! It got rescheduled because of some equipment issues we were having.

I have to say, I am quite impressed with Rush and Dr. Smith. (I had his first name wrong in my prior post, so I just fixed that.) And the woman in charge of scheduling and EEG and MRI stuff (I don't have her exact title at my fingertips) is WONDERFUL. It's amazing the difference you feel when you are treated courteously and with respect and even treated just nicely in general.

We are starting the Goleic today. Deep breaths. LOL I am just nervous. It will be fine - better than fine. It will go great.

I also need to retake Preston's ATEC before we start. That's next on my list, after finishing this post.

I found my moodiness and irrational behavior was due to a heavy reaction from a homeopathic remedy I was taking. Apparently, it brought some things to surface a little too quickly. I will resume the remedy, but I want to make sure everything else is stable before that. Whew!

Preston has adjusted really well to the change in his meds. He was a little off for a few weeks, but now he is much better. In fact, we've some great improvements. He's more engaged with us at home. He plays less with the cords and the vacuums and it more attentive. He is doing great with the "regular" kids in preschool. He is also doing better in OT. We still have challenges, of course, but we are getting there. As people told me in the beginning (which I am starting to understand now!)'s a marathon, not a sprint. As a runner, I have an appreciation of that from the physical "I'm a runner" sense, but now I know what it means from an autism sense as well. Preston didn't get sick overnight. And he won't recover overnight. But, he WILL recover.

We are moving through his clears homeopathically speaking. We are one clear away from all of the things that happened at his birth. I firmly feel we will see some great gains from clearing that trauma. I think the trigger that kicked off his issues were all the antibiotics they fed me in labor. I still feel angry about that.

But, we are moving onward and upward.

Oh, got distracted. New ATEC is 32! Woo hoo!