VEEG

Monday evening, September 17th we got the call - time to go in for the video EEG! We were told to arrive anytime after 8pm which made things a little confusing for Ryan. Bath, bottle, van - WHAT? But he handled it well.

My Dad came with Jeff and I to help get Ryan settled and to help cart all our stuff to his room - yikes! We brought all his bumpers and just about every toy he had from soft ones to bigger electronic type toys and of course his high contrast black and white books. We basically brought everything but the kitchen sink as you can see in this picture (all this for a 24 hour - 4 day stay):

We shared a room with a young mother who was there with her 3 week old. Not sure what he was in there for but he was hooked up to an IV for fluids and antibiotics. As we were getting Ryan's crib ready the nurse came in and checked him out - temp, blood pressure, heart rate etc. She then told us that the EEG tech's would be hooking him up the NEXT day! Well what the heck are we doing here NOW? Ryan could be home in his own crib and I could have avoided a night in this thing:

Oh well, we were in the hospital which is where I had been wanting him to be for a while...we'll have a nice little sleep and get hooked up the next day. That nice little sleep indeed was little but definitely not nice. The poor little baby next to us had to have his IV replaced twice in the night and holy smokes he was one loud squawky little thing. It was a long loud, brightly lit night that left me with about 2 hours of sleep and Ryan with a scattered few more than that. Morning came and with it brought a whole new avalanche of nerves as we waited to get hooked up. My Dad came by early to bring me some breakfast (he's the best)! While he was there a nurse came to escort us to the EEG room to get Ryan hooked up. His head was measured and marked and all 25 electrodes were glued and cemented to his head. Then came the gauze, tape and stocking/hat complete with a "tail" to keep all the wires encased and tidy. Here's what the back of his head looked like - complete with his own little ducky tail:

Back down to his room we went with the EEG tech pushing the camera/monitor cart thingy in front of us. Ryan got re-settled in his crib and was "plugged" in. As soon as I saw his brain waves blipping away on the screen my stomach was sent way down to my toes! I hate that monitor! I took this during one of his "episodes" (freaked the heck out of me - the lines are suppose to be nice and mellow in a 'normal' brain). The neuro says this is what the brain looks like as it's getting drowsy...hhhmmmm...okaaaaayyyy:

Ryan's neuro and a couple of residents came in to check on him throughout his stay. I was very very impressed with the attention, care and consideration Ryan and I were given by his team. It was nice to have after an incredibly rude and somewhat hurtful e-mail I had received from a different doctor just a couple of days before (regarding a video I had sent of Ryan). The neuro was wonderful when dealing with my anxieties about what I was seeing on the monitor and explained a lot of the blips to me. I told him he wasn't allowed to leave the room and all he did was laugh not too sure what was so funny as I was quite serious and in the back of my head I was thinking of ways of barricading him in the room with Ryan and I!

The second night we were there Ryan could not settle and was awake crying until 2:00am. As soon as he would settle just a tiny bit the baby beside us would start up and set Ryan off (weird because he's not usually bothered but stuff like that). Poor guy though was so out of sorts and just wanted the peace, quiet and comfort of his own bed. Morning came quickly and with it came more hours of standing and staring at Ryan waiting for something to happen! For our entire 3 day stay (48 hours hooked up) he had only 3 "episodes" and all were fairly weak.

Here is a picture of Ryan doing a little post dinner vision stimming with the iPad:

Our 3rd night was great as our neighbours had been discharged that afternoon so it was just the 2 of us all night long. It was awesome! We both slept really well. I woke up and waited for another episode but Ryan wasn't really cooperating - haha! He was however starting to get bored on day 3 and a little antsy. During the neuro's rounds that morning he asked if I felt we had enough data to get some answers. I think we did.....discharge papers were written up and the tech came down to soak the leads off Ryan's head. After a long 48 hours of not being able to rub Ryan's silky little curls I was very anxious to get his "hat", tape, glue etc...off! I was very shocked and could have used a little warning before I saw THIS (September 20th):

We got him home in time for lunch and a nap in his own crib...here's our sweet little bum post nap, clutching one of his favourite bed toys (it's gross and stained but he loves it):

It took a good few days to for both of us to catch up on some sleep. It was good to have some down time when we got home because the following week was nuts! 7 therapy appointments, 2 days of nursery school for Quin (one I was a duty parent for), plus toy cleaning duty at Quin's school. This was also the week I had to leave her for the first time ever in my life with "strangers". I was emotional on the way there....fell apart in the parking lot....composed myself enough to go in. Got to play with some of the kids and Quin for a bit but felt myself started to buckle as I watched her walking around. I scooted into the other room where the kitchen is and let myself fall apart. The poor Mom on snack duty (she was in the kitchen prepping the snack) must have thought I was crazy. Before I could get myself together and head back out for a goodbye circle time had started so I had to wait. I went back out and watched Quin dancing and having fun during circle time (such a relief to see). When the kids were all excused for free play I rushed Quin over to the painting easels (probably her favourite station - one I knew would be a good distraction for her). This was it....the moment I had been dreading since pretty much the day she was born....that hug, kiss and goodbye that begins the early stages of independence (aka Mommy has no control over what happens after she leaves). With a VERY large lump in my throat I choked out a quick goodbye and reassured her that I'd be back to get her when school was over. A big squeeze and kiss and the tears fell literally as I was rising from my squatted position and turned to walk away. Sobbed the whole way back to the van and home. I would have stayed in the parking lot for the next 2 hours but Ryan had a 10am therapy session so I had no choice but to leave (worked out for the best really)! When, Ryan and I picked her up I got the biggest hug and soaked in her "I missed you Mommy"! Home we all went happy to have made it through the day. I think that night I slept like a log....holy smokes emotions sure do tucker a person out!

Monday October 1st, we met with the epileptologist. We learned that Ryan didn't have a single seizure during the 48 hours he was hooked up - GREAT news!!! You would think I felt a little reassured...maybe a tini tiny bit but that's about it. Once Ryan comes off Vigabatrin we wait for things to happen. Will the his Infantile Spasms return? Will he quickly transition into new seizures? How bad will they be? Basically we will be living the rest of our life / Ryan's life on edge waiting for him to have new and different seizures including Grand Mal (the full blown scary looking kind). Its great knowing he didn't show any seizure activity for the 48 hours he was hooked up for but maddening and frightening knowing the activity at the back of the brain is still there (about 70% of IS kids have the activity in the occipital lobes). As his neuro describes it, the epileptiform discharges that are happening in Ryan's beautiful brain are like little sparks. If there are enough sparks happening and they begin to happen more and quicker they ignite a fire (aka a seizure).

In most cases IS resolves around 18 - 24 months. In some cases it can continue to the age of 5 but its not common. If the spasms return 1-2 months post wean, Vigabatrin would probably work at controlling them again. Any longer than that and the brain has already moved on from the drug and it very possibly wouldn't work.

If he was to have a bunch of little seizures his brain should be fine. Doctor's can't tell me how many it would take to cause damage (no one knows apparently). If he was to have a Grand Mal lasting more than 25 minutes some damage could occur...coma's are possible but its not always a likely occurrence. I asked at what point do we call 911. He said anything involving body convulsing lasting more than 5 minutes. Under no circumstances are we to put him in the car and transport him ourselves.

Its all a lot to take in but nothing much new that we didn't already know about. We wish we didn't have to know about any of these terms of course.

Back to the hospital on Thursday for his GI appointment.

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...

It's all good...

Okay, so it's been 1 month since my last post...that's better than 2 months right? The scary thing is that it feels like just yesterday when I posted last. I think we can all appreciate and agree that time and life is whizzing by way too fast!

So what is new and what has changed...well actually it’s been going pretty great lately! I fear saying that out loud but there...I've done it!

Ryan got a new (loaner) gait trainer - here he is with Quin and her tractor:

On July 17th, Ryan's endocrinologist called to let me know he would like to increase Ryan's thyroid meds (FINALLY - I have asked and requested this a few times but was always given the same answer - "he's in the normal range so let's just leave him for a bit"). Sure he's been in the normal range but it's been in the very low/normal range. There are many symptoms of low thyroid and there may be some of you reading this that already know about them. Below are just some of the symptoms that we've seen in Ryan that could be related to his low/normal levels (some of these could also be related to his other conditions/medications as well):

* Constipation
* Fatigue
* Depression
* Low muscle tone
* Impaired cognitive function
* Inattentiveness
* Irritability
* Mood instability

Since the increase and more so in the last week or so (along with reintroducing B6 back into his med/supplement regime) he has been on cloud 9! Not only has his mood improved but his cognition has also picked up. He's been actively reaching for his toys (hand/eye co-ordination has improved greatly). He's playing more. His strength and willingness to work has been so encouraging to see (on July 25th he started butt scooting a tiny tiny bit). Mostly though and yup, here come the tears...he seems to really know who I am. He's been much more responsive to me. Almost reaching up for me in a way when I ask him if he wants his bottle etc... The other day I went to get him from his nap...his back was to me against his crib. As I started talking to him he tilted his head back to look at me then reached up and back with his right arm/hand to find me! Oh what sweet sweet feelings and chills that gave me!

Let's see what else has happened since mid July?

Quin is potty trained!!! Wow she was as tough cookie with that one!

Also our little potty goer's soccer season came to a close - something I think she was happy about. Each week we’d hear the same thing “I want to go home” or “I don’t like soccer”. Most weeks it was really hot and boy does she ever pink up and not do well in the heat! Here she is actually posing for her official soccer photo:

On the bright side she met a couple of little girls who will be attending the same nursery school as her (same mornings)! It’s hard to say for sure just yet if she has been cursed with my shyness. We’ve had her in a couple of things now to socialize her a bit and give her her own little “life” outside of what she has to deal with at home, I just hope it’s been enough to prepare her for school life. I feel sick even saying that! Like any Mom I’m dreading being away from her…it’s only twice a week for 2.5 hours at a time (and occasionally I will be with her as a duty parent). But ugh, how my heart breaks and stomach drops at the thought of walking out of that building without her and leaving her to fend for herself and be with strangers. I know they won’t be strangers to her or me for long but still…. It’s going to be awful but good (for her) at the same time. Let’s change the subject!!! *sniff*

The results of Ryan’s hip and shoulder x-rays both came back clear! Phew! There is still some clicking and popping so I’m hoping its “normal” and nothing comes of it…perhaps as he grows it will lessen.

He had his 4th ERG while on Vigabatrin performed on July 27th. I’ve emailed the ophthalmologist and we are now just anxiously awaiting the results of the exam which will tell us how his retina’s are doing while on his anti-convulsant meds.

One day near the end of July, I got the mail and there was a letter and cheque from the government regarding the disability funds Ryan is entitled to. The next thing I knew I was sitting in the van in front of the mailboxes crying…good lord! I think it was just the fact that it was official that the government says Ryan is disabled (hate that term) and they are saying here you go…you’re going to need this. I guess they are kind of right. Ryan has a $195 therapy jumper hanging from the ceiling (he’s way too big for his infant jumper – but loves to jump so we needed something) and he also has a pair of semi-orthopedic shoes coming from the Netherlands soon that require final payment. These should help his ankles from collapsing when standing and fingers crossed help get him up and walking. He’s doing well with regular physiotherapy but these shoes will give him just a touch of support where he needs it most.

On the 31st of July he had his check up with the developmental pediatrician. She was pleased to see how much stronger his core had become since she last saw him in December 2011. His head control was also something she was happy with. She does however, put him at about the level of a 6 – 8 month old baby (he is currently 22 months old). This didn’t come to a shock to either Jeff or I but it’s still hard to hear. I was hoping for more of a 6 – 10 month old range and at times he does seem a bit older than just 8 months old so I’m going with what I see and not what one doctor says after spending less than 1 hour with him.

Jeff has had a couple of things done recently. One is some very special 'art work' on his left arm...the kids names in script and braille:

Then in early August, he went in for the old “snip snip”. A year ago (July 17, 2011 specifically) I finally came to terms with the fact that we would have to stop at 2 babies. I had been going back and forth since the appointment when we learned about Ryan’s vision. Our plan was always to have 3 (heck if I was younger and we were richer I’d love to have gone for 4) – which is why Quin and Ryan are so close in age…we wanted them all as close in age as possible. If things had gone as planned #3 would have been born last month. After Ryan’s Infantile Spasms diagnosis Jeff too admitted that having a 3rd would be unfair to not only that baby but to both Quin and Ryan. As time went on it became apparent just how much time both our little ones need given all that has happened and changed since "that phone call" on January 19, 2011 and that we wanted to give them anything and everything we could to make life as easy as we can for them. We did however give it another year just to be certain. The night before he went in he was working a late shift. I put Ryan to bed first as usual and gave him extra hugs and cuddles soaking in the bit of baby-ness that remains in him. Next was Quin…we did our usual routine but spent a little more time rocking in the chair together before I tucked her in. Before I knew it she was fast asleep in my arms and I was a sobbing disaster trying so hard not to wake her. The last time she fell asleep in my arms she was 9 months and 9 days old (it was the very last night she was breastfed). The fact that it happened the night before her Momma was to be cut off (no pun intended haha) from future babies didn’t go unnoticed.

Feeling a little sappy and got to looking at some old photo's...here are my little ones as babies.

Quin at 3 weeks old:

Ryan at 3 weeks old:

Quin - almost 2 months old:

Ryan - just over 2 months old (it was when I was taking these pictures that I started to REALLY wonder about Ryan's vision as he would not look at me at all and it was also when I started admitting that his eyes seemed a little off):

On August 17th, Ryan finally had his allergist appointment. He’s a little bit irritated by cats it seems but clear on a lot of other stuff so that was good to get done and out of the way. It was definitely one of his better doctor appointments!

Last week was his check up with the endocrinologist to go over his latest blood work and overall check up. His thyroid levels are up at a more comfortable range. The endo though still says even though he was a little low before he was still in the normal range. Okay that’s fine and all but we all (myself, Jeff, the whole family – I’m sure even Quin) have noticed how much happier and “with it” he has been since the upped dose. I told him as much but got the typical ‘cover their butt’ response. I swear most of these doctors really don’t know what they are doing half the time and just try this or that till they get a good result! Dr. “V” did say that Ryan was an impressive looking specimen. Ummmm thanks? Haha… Which he followed up with "he really is quite gorgeous"….THANKS! I mean look at this face:

These were taken on the 1 year anniversary we got the call confirming he had Infantile Spasms (he really doesn't seem to care - haha):

Most recently (this past weekend) we went up to visit my sister, her family and their brand new pool! Neither of them had been in a real pool before so we were really excited to get them in it! Quin loved it! Ryan was a little preoccupied with the ear cover I made him wear to keep water out of his ears (tubes). I cut him some slack and took it off and he came alive! For one it wasn't there to drive him nuts and for another he could hear. It's a pretty heavy duty fabric and no doubt cut him off from the world just a bit!

Going forward the month of September brings a lot of stress - another eye appointment with the ophthamologist, Quin starting nursery school, the video EEG and trying to keep and make time for all of Ryan's appointments mixed in with getting Quin to and from nursery school... Oh it's going to be a tricky road in these next few weeks! Right now though all I'm concerned with is that Ryan has been comfortable and happy for a good 3 maybe even 4 weeks now.

It's been awesome!

Day 9 and finally feeling fine! (WARNING: TMI)

Holy crap (pun intended)! Never have I been more obsessed with poop than I have in the last week!

On Saturday, July 7th, poor Ryan started crying and feeling uncomfortable. He had a few very mushy poops...the next day he had 4-5 mushy and watery poops. By Monday, he didn't poop at all and was screaming. Tuesday more yucky poops and crying, Wednesday no poops and didn't want to eat lunch...loads more screaming! :o( Given all that Ryan has to deal with I don’t mess around with anything that seems off with him. Here we come again ER (both his ped and family doctor don't work on Wednesdays)!

My Mom came with me while my Mother-in-law stayed at home with Quin. Each time I leave the house with Ryan and not Quin (which is frequent due to all his therapy and doctor appointments) I drown in guilt. She so young and so sweet and doesn't completely understand it all but she is quickly catching on to the whole situation. Trying to explain everything to a 3 year old though isn't exactly easy. Anyway, got a little side tracked. Thank goodness my Mom came with me...Ryan was in a bad bad state shortly after we got there and I was so happy to have the extra help (especially from my Mommy..haha). It was so sweet seeing him cuddle into his Grandma's arms.

On the way to the hospital Ryan (the little bugger) was actually making happy cooey noises...even when we got to the ER and were checking in they asked the reason we were there. I told them excessive inconsolable crying and screaming. I swear she looked at content little Ryan, then me and sighed. Off we went to the first waiting room to have the triage nurse look him over. When we were called he was still fairly ok but very quickly fell apart and it just got worse from there. Off to ER waiting room #2 we went. It was a bit of a wait but we were eventually taken to a bed and waited for the doctor.

I again went through his medical history and medications and the reason we were there. By this time Ryan was incredibly upset and while my heart was breaking for him seeing him in such pain, I was glad that it was happening in front of the doctor so she could see just how awful he was feeling. They ran some standard “tests”, pulse, oxygen levels, temperature etc… They wanted to test him for a UTI which meant a catheter. This isn’t a fun process to have done once for an adult…never mind TWICE when you’re only 20 months old. They couldn’t get any pee out of him on the first try so they put a bag on him but after an hour and a half of not peeing they had to catheter him AGAIN! :o( It was god awful for him (as you can imagine). The UTI test came back negative. He was also sent for tummy x-rays which according to the ER doctor showed significant ‘fecal loading’ as she called it. But the pediatrician who saw him a couple of days after the ER visit said that upon looking at the xray he didn’t see any significant back up. Ugh, this is all so confusing and frustrating…why can’t we just be given a nice simple straight answer!!! We were in the ER for 5.5 hours 1:00pm - 6:30pm (ish). Ryan generally naps between 1pm and 4pm but he absolutely refused to sleep (can't blame him with all the poking and proding he was enduring). Here he is totally exhausted:

What we did know is that Ryan was a little backed up but that he was also having “overflow” issues (diarrhea). Really? Both at the same time…the poor poor babe he just can’t catch a break. The ER visit was on a Wednesday, for the next few days he continued to cry, scream and literally writhe in pain. Everything was done to make him comfortable, Tylenol, Advil ,warm packs on his tummy, upping his Polyethelene Glycol (poop softening meds). Nothing was working. On the weekend we decided to try switching him to lactose free milk (what sucks is that for some reason 3.25% doesn’t come lactose free so he’s only getting 2%)…that didn’t seem to do much. At the advice of a few wonderful people I switched him to just plain old rice cereal (maybe he has an issue with gluten). Within a day he was doing much better!!! Yesterday (Sunday) he was smiling and being his silly, goofy little self…he even had a little giggle! The atmosphere around the house was much improved knowing Ryan was once again comfortable and content.

So as it stands right now we’re sticking with lactose free milk and hope to find some gluten free baby cereal (he still doesn’t really know how to chew so he’s still on puree’s and cereals). What isn’t fair though is that I read that in order to find out if you really do have an issue with gluten you need to be eating the things that make you feel crappy in order to get a diagnosis. So I may have to switch him back to his regular cereals if we get him tested. For now though I’m going to go with what seems to be working for him because holy lord this child needs a break! I’ve put in a call to the pediatric allergist that he’s been referred to in hopes of getting his August 17th appointment bumped up and a request has been put in to have him put on the cancelation list for his GI appointment which isn’t happening until October 4th.

In the middle of all this craziness I also took him to the family doctor on Friday to get a requisition for his hips. When you have low muscle tone it's common to have issues with your joints. Ryan's hips seem to be clicking and popping more than normal lately so he's being send for xrays and ultrasounds on both hips.

Today is Monday...fingers crossed for a drama free week!

Where did my baby go for 2 weeks?

On June 14th, Jeff and I celebrated our 4 year wedding anniversary (it's also the day we met 15 years ago). Been a busy 4 years let me tell ya!

Christmas 1997 (dorks - haha):

Honeymoon 2008 (much cooler here - hehe):

On the 15th, we took Quin to African Lion Safari while my Mom and both my sisters spent the day with Ryan. The 3 of us had a lot of fun together and it was so good for Quin to have just us to herself for part of the day.

On the 16th, my parents babysat the kids so Jeff and I could go to Odessyo in Toronto (kind of like Cirque du Soliel but with horses) for our anniversary. It was an amazing show and I was biting my lip real hard to keep from crying at the end...it was just such a gorgeous show. Little did I know at the time that just minutes later I would be shedding tears for a different reason. As we were rushing out of the show to get to the car and beat the crowd out of the parking lot Jeff tells me he has a few missed calls....my heart literally stopped when he said it was from home. I grabbed my phone and I too had a couple of missed calls. Shaking like a leaf I called home as fast as I could. My Mom told me she thinks Ryan has been having seizures. Poof, "good feelings gone". She told me he'd been having some head bobs (Infantile Spasms alert) and had some weird movements and stiffening of his legs and arms. With feelings of dread in our stomachs we hit the road and of course got stuck in the oh so fun and typical traffic on the Gardner and QEW - I hate both highways and hated them even more on this day!!! When we got home Ryan seemed ok but with everything that had been going on with him lately and all the video's, calls and e-mails I had been sending to the pediatrician and neurologist I'd had enough...we were taking him to the ER!

We checked in and waited and waited (longest I've had to wait in the ER with him)! They finally called his name and took us to a newer area of the ER, one we hadn't been to before. They put us in a nice "little room" with lights that we could actually turn out! It had a reclining chair which Jeff promptly tested out and a nice bed which I stretched out on along side Ryan. As soon as we were comfy a nurse came to get us and told us the doctor on the other side of the ER would be better equipped to deal with the reason we were there for. So we got up and went into the brightly light icky side of the ER and waited some more. A very nice resident came over and took Ryan's medical history and watched him for a while. He was doing some head bobs but at this point the bobs were mostly all with his head falling backwards (not TOO scary). Then the main doctor came over...by this point it was about 9pm and well past Ryan's bedtime. The doctor checked him over and asked some questions then went to go contact the neurologist on call. Not long after he was gone, Ryan's head bobs became much stronger and more frequent and he started making the "IS" face as his head would fall forward (kind of a spaced out what the h*ll just happened scared look). It was the first time I had seen "the look" since last summer when he was first diagnosed. I freaked and told Jeff to go get the doctor quick. The 3 of them came rushing back and watched Ryan. The main doctor said that yes those look like Infantile Spasms head bobs. We were devastated to say the least. I was frantic and with tears welling up I said "Help him!!!"..."What can we do?!?!?". It was so painfully heartbreaking to watch him. Jeff looked like he was about to puke and I was a puddle as we watched this horrific form of epilepsy literally eat away at and destroy our sweet little boy's brain. The neuro on call suggested we up Ryan's Vigabatrin dose from 750mg in the morning to 1,000mgs and keep his PM dose of 750mg the same. She said all the notes and information from our ER visit would be on Ryan's neurologist desk for Monday morning and to call first thing to get an appointment for him. We took all this in and hit the road still not knowing what to think but knowing what we felt...which wasn't a pretty feeling.

This was taken 2 days after we were in the ER:



The next day we upped Ryan's meds and waited... One thing I had forgotten about was how Ryan was when he was first started on Vigabatrin last summer. His sleep instantly went out the window, he was spastically hyper all day and as time went on he became very moody and irritable. Most of those side effects had subsided over time or at least became less of an issue...or maybe it was that we had become so used to them that it was just the "new norm" in our house...not sure! June 17th was the day his meds were upped, within a couple of days Ryan's nights were a disaster...he barely slept...naps weren't much better. On the 20th before things started to get real bad for him he held onto and fed himself a 'veggie straw'...first time he's really actively fed himself and chewed consistently (aside from the piece of cheese he got in his mouth a few weeks ago)!



Within a week he was crying inconsolably and was what I can only describe as psychotic.

This was taken during the peek of his "crazy" time. The video doesn't do it justice and he may just look like he's kind of freaking out. But he's got his jaw clenched so tightly I was fearful he might break it. His hands keep fisting up and he's shaking. He's also making some non-Ryan/crazy noises. It may not look as scary in the video...in person though it was quite terrifying to watch.



Most anti-seizure meds have crazy side effects and Vigabatrin is no exception. Some kids have no problems, some like Ryan get just about every evil side effect the drug has to offer! I had sent video's to his neurologist, who by now had told me that he didn't feel Ryan was experiencing a return of his Infantile Spasms but that he will send him for a 6 hour day time VEEG (video EEG) just to be on the safe side. Wouldn't you know this won't be happening until SEPTEMBER!!! A couple of the video's I had sent were of Ryan completely freaking out. He was so crazy with rage, fear and sadness that I honest to God could not hold him at times..he was out of control. The neuro's thoughts: Oh it's just behavioural. WHATEVER! I don't know how many times I have told these doctor's that I am his mother...I spend 24/7 with him...I know what is normal and what is not. What I am seeing is NOT normal...he is not misbehaving or having a temper tantrum...something is not right!!! I was able to speak to a neurology nurse (not his regular one) and explained to her what was happening with Ryan. She said that if Dr. ___ didn't feel it was spasms or seizures and that Ryan was in so much distress to lower him back down to his regular dose. While I was worried about him seizing I was putting my faith in the doctor's and nurses and lowered his meds. Within about 5 days he was his old self again. The intense and on going crying spells and the crazy psycho fits were gone (behavioural my a** - damn him for not listening to me and believing me). This past Monday night was the first time I had heard him laugh in over 2 weeks. Amazing how such a sweet and beautiful sound can bring a person to tears! The other thing that is helping Ryan feel more comfortable is the addition of Zantac to help with a bit of relux issues and vitamin B6 to help combat the irritability and mood swings caused by his seizure meds.

So painfully sad (this is the face we saw A LOT of during these 2 weeks):

Literally exhausted from crying (and in this he is still crying/moaning):

Finally feeling a bit better and enjoying his guitar app on the iPad:

Where Ryan "went" during those 2 weeks only he will know. I just hope for his sake he never has to go there again!

2 months worth of updates!

Ok so I admit (again)...I suck at blogging! I has been almost 2 months since my last post and THAT is highly unacceptable and will not happen again! It has obviously been a very busy couple of months (hence the delay) so I will try to condense all of Ryan's happenings into one "little" post! Wish me luck...

First here's a few pictures:

Happy boy!

Standing on grass for the first time!


She loves her brother...really she does!!!


Chillin' in his gait trainer from Erinoak Kids!


Quin's first soccer "game"!




So when I left off it was mid April and Ryan was really getting into the swing of things with coming up into a sitting position. He's mastered this feat and it's impossible to keep him down now! Problem is that even though he can get up nice and easy...he falls down nice and hard. He's still not able to get his arms and hands out to catch himself so he pretty much hits the deck like a ton of bricks unless someone is there to catch him (which isn't always the case).

April 18: Sedated ERG at Sick Kids. Ryan barely slept at all the night before so the sedation hit him very quickly and they didn't even use all the drug. He ended up sleeping for 6 hours off and on after the test which of course screwed up his days and nights again so back on Melatonin he went. And so began the wait to find out if his retina's are still suffering damage from his seizure meds.


April 21: My awesomely sweet and strong willed Quin turned 3 years old! For more than half her life she has dealt with all the insanity that comes with having a sibling with special needs and I fear it's really starting to get to her. I won't go into detail or over explain things as I tend to have a habit of doing. All I can say is she is a very intuitive, sensitive and brilliant little girl.



April 22: I walked into Ryan's room to find him sitting up in his crib - amazing and very freaky to see!

April 23: After almost 15 years, Jeff has officially said "see ya later" to shift work. He has taken on a new roll (still within "the force") that allows him to work Monday - Friday day time hours! It...is...awesome and so is he for doing it! It's made life much less stressful around the house for the kids to have both of us around every night and every weekend. It gives us all (especially Jeff) a lot more structure to our lives and enables us to be a "normal" family! Something we've just started doing (early June) is that he is doing 1 "afternoon" shift a week so that he can take Ryan to one of his PT appointments a week. This gives me some Mommy/Daughter time with Quin and she gets to see someone other than me take Ryan out the door for this or that appointment.

April 29: Sat in a shopping cart for the first time (thanks to his Hugga Bebe)!


May 2: Enjoying his visually stimulating Pack N Play!


May 7: I took Ryan to see the pediatrician as he had been having massive meltdowns once again. Lots of very intense, loud and prolonged screaming fits. Thankfully he was in the middle of a meltdown during our appointment...sure it made it difficult to have a conversation but at least he got to see it first hand. He said he would get in touch with the neurologist (because once again god forbid I should be able to get the guy to talk to me himself). I did call both the neurologist and endocrinologist and was told to 'start' with the ped...sigh.

May 12: Ryan had a 30 minute "stoned" episode. I videotaped some of it once I snapped out of my heart stopping, sickening moment of panic and sent it off to his neurologist along with a very detailed description of what had happened. I swear it seemed like a seizure to me (I'm still convinced something was up) but the neuro said he just looked "tired". Fine...ok. The only reason I'm not banging down their door is that it hasn't happened since and he was a little tired so maybe...

May 14: Tube surgery follow up and hearing test. We discovered that Ryan's left tube was blocked with leftover fluid from the surgery and his ear drum had filled back up due to the blockage. This probably explained why he was collapsing so much and being extra off balance during his PT sessions. His therapist and I weren't sure if they were "drop attack" seizures (yes, it meant another call to the neurologist). The ENT doc gave us some antibiotic drops for his ears to help break up the fluid and sure enough 10 days later he was all cleared out and no longer dropping to the floor and falling. STRESS!!! The hearing test he needed done didn't go so well. Ryan is very developmentally delayed and doesn't respond to a lot of things the way normal babies and toddlers do so they sent us off to another hospital for a more specialized test (basically all that meant was there were 3 people doing the test instead of 1). That too was a bomb so they said lets give him more time to develop and see what happens. We go back on November 14. I know he can hear so I'm not 'overly' worried but I guess it's a question of how well. Also, on this day Ryan had a PT/OT session before the doctor appointments and then right after the doc appts he had to go for his standard (every 3 months) blood work. I won't go into the mix up that happened at the hospital with that one but I will say that Ryan's lovely pediatrician called me on the long weekend from his home to let me know that his blood work came back fine. I seriously love that guy and pray he never ever retires!!!

May 15: Quin tickled Ryan's feet saying "tickle tickle tickle" in her sweet and excited little voice. As happens a very large percentage of the time Ryan did not respond or react...Quin turned to me looking totally dejected and so innocently said, "He's not working". BREAK MY HEART.

May 17: Ryan got a piece of cheese into his mouth!!! Not sure if it was a fluke but it really did seem like he was working hard to get it in there!
Here it is as it was happening!!!


May 29: Finally got the word from the doctor at Sick Kids letting us know that Ryan's retina's are NOT showing damage from his anti-convulsant Vigabatrin (as previously reported after his January ERG). Such fantastic news!!!

May 31: Quin helps Ryan learn how to use his gait trainer. Since he doesn't have the vision or muscle power to understand the concept she's giving him a little boost!


June 3: Both of our cats got out of the house at night (we didn't know until the following morning). I opened the door and Clyde came running in...Sully remained missing for 24 hours. Turns out he was under our neighbour's back porch. Here he is the night after he was found totally content in my lap! Punk better not ever do that again - he added just a few more grey hairs to mine and Jeff's head!


June 5: The family doctor prescribed a topical antibiotic for the back of Ryan's ear. He constantly plays and pulls on his ears (hello autism alert - he's got LOTS of autistic traits...LOTS) and gets a little too rough at times. His left one got mangled and it ended up infected but quickly cleared up thanks to the antibiotic.

June 6: This day started off great as it was Quin's 2 year anniversary of walking and the 1 year anniversary of when Ryan tracked an object for the first time. Then during breakfast Ryan had a strange episode (wasn't the first time) where his face got all twisted and contorted. Obviously I instantly think seizure but I also thought Tourette's. I got a little video of it and sent it off to the pediatrician and neurologist. The ped said he isn't worried about what he saw...still waiting to hear from the neuro - shocking I know. If the video doesn't show up in the blog here is the link: http://www.youtube.com/watch?v=Xm5qT7C3j2Q



I'll end here and get to work on the roller coaster early/mid June updates - it's been a doozy!