Friday, 14 September 2012

Here we go again...

Well as expected, I should have kept my mouth shut. Stealing a quote from "Nemo", good feelings gone.

Ryan has been having more unusual episodes (aka possible seizure activity - we don't know). Since he does still have activity at the back of his brain in the occipital lobes I am on the look out for anything strange. For a number of months I have been sending emails and video's to his neuro and nurse with what I think is some kind of seizure activity but I constantly get the response of "no, he's fine. We don't see anything concerning" etc... Easy for them to say as its not their child!!! Well in the last 10 days as I said he's been having more unusual episodes.

What we've been seeing is Ryan go from animated and "with it" to quiet and still with his eyes kind of closed and squinting almost like he has a headache. He even flinches at times and will raise his hand up to his head and eyes almost like you would do if you have a migraine. The episodes last anywhere from a few minutes up to half an hour. Last week, as he coming out of one the phone rang and wouldn't you know it was the hospital calling. It turns out they are changing his 6 hour video EEG (VEEG) which was scheduled for Sept 21 to a 4 day/night maximum VEEG possibly this coming weekend (we'll hopefully get a call on Sunday the 16th - all depends if they have a bed available for him) I guess the neuro is finally coming on board with my Mommy gut instinct and feels we need to get to the bottom of what's happening.

From Friday and over the weekend I sent quite a few emails and video's to the neuro without getting any response. On Sunday the 9th at around 11:30am when another one was starting we threw the kids in the van and headed to the ER. As we were driving he came out of it and was playing and happy again. When we got to the hospital my parents came to get Quin so Jeff and I could stay with Ryan (my parents are seriously over the top awesome). I explained to the dingbat ER doctor what was happening, showed him some video's and explained all of Ryan's conditions. He says he's heard of different types of epilepsy but isn't familiar with them *sigh* Then he had to go to his computer to look up Septo Optic Dysplasia as he didn't know what that was either. Can't fault him for that as it really isn't very common (1 in 10,000 births). He even seemed surprised at the Hypotonia diagnosis saying "he doesn't look like he has low muscle tone". This was said as Ryan was sitting completely bent over with his little forehead pressed into the bed. Whatever doc! Anyway, he ran some blood work (even threw in some of the SOD blood work) and he was catheter'd for a urine sample. As always Ryan's tricky little veins proved troublesome for the pediatric nurse. She tried and tried in his elbow but the vein was impossible to get. Success was made after a lot of fishing around in the back of his hand (I won't go into detail about how badly Ryan was crying - all I will say is that I was certain his heart was going to stop). Here is his poor little bloody hand and inner elbow:

Everything came back normal which was great (we hold on tight to any good news we get)! The ER doc spoke to the neuro on call who ironically is the neuro we're probably switching to in a few weeks (appt Oct 1). He wasn't too concerned with what is happening with Ryan and said all we can do is try to capture some of these episodes on the VEEG and go from there. Home we went utterly frustrated and still drowning in stress and worry. Unfortunately, we had to wake Ryan from a peaceful little nap:

The next night (Monday), on the eve of Quin's first day of nursery school he had another episode (he has about 2 a day - one in the mid/late morning hours and another in the late evening/bedtime hours). The episode lasted about 15 minutes and was no different than any other. His reaction this time though was very heartbreaking. He cried and cried and kept touching, almost rubbing his eyes and head and was just so upset. I held him as tight as I could without crushing him. He came out of it and had a good sleep that night. In saying that he's been sleeping better at night which for most Mommy's they'd be over the moon about but for me its sending me into an even bigger worrying frenzie as I'm thinking and wondering maybe he really is seizing throughout the day and is just so tired from it all that its making him sleep better at night.

Today is now Friday and as I type I am still thinking about the latest episode from 10:30am today. He didn't seem bothered by it but it's just so troubling to watch him. The unknown is part of the biggest stressor. The only "good" thing about any of this is that when he does have an "episode" he allows me to hold and cuddle him. Normally he's just so crazy active and needing to move that it's impossible for him to be still (which will make it real fun when he has 25 dainty wires glued all over his head). In the past, his EEG's have been 30 - 45 minutes in length. This one will be 1 - 4 days - where I will find the ability to keep my sanity I don't know. Between trying to keep him still and untangled, watching him like a hawk for anything unusual and staring at the monitor's watching his brain waves blipping away....ummmmm ya! Let's not forget the other precious little person going through all this...sweet Quin. Fingers crossed the VEEG captures enough episodes (not that I want him to have ANY) in a 24 - 48 hour maximum time frame so that I can get back home. I'm sure Quin will be fine but I'm not too sure. The other night I was out for dinner with a friend when I got a text from Jeff saying Quin refused to go to sleep until she saw me...oh dear! Sure enough when I got home at 9pm there was Quin singing away doing her ABC's. Next week is also suppose to be her first day at nursery school with OUT me (I was a duty parent for her very first day this past Tuesday). If I am at the hospital with Ryan we will probably keep Quin home until life gets back to normal (whatever THAT is). Really - normal is over-rated not too mention boring! If there's one thing for sure...we're never bored in this house!

Here are some more random pictures from the last couple of weeks:

Ryan in his modified "bath seat" (yup that's a belt):

Checking out the iPad together:

Making Ryan pretty with a little lip balm (Quin is about to get clobbered by Ryan's new therapy shoes):

Fancy new sensory area:

LOVE this picture:

This is what you too could do if you had hypotonia and hypermobility:

Working out with a Mommy modified 2.5lb pilates ball:

So sweet:

Happy 1st day of nursery school Quin:

He's been getting much more curious about things and using his hands a lot more - SEE. He was quite proud of himself I think...and so he should be:
* What do you think of his handmade, visually stimulating bumper pads? I'm telling you I've never EVER been one to toot my own horn but darn it all if Ryan and all his conditions hasn't brought out a very creative, thinking outside the box side of me! Toot toot! :o)

Cross your fingers we get a phone call from the hospital on Sunday saying come on in we have a bed for Ryan!

Stay tuned...