Diagnosis #4

Sometimes it really sucks being right all the time!!! Lol.... Okay so maybe I'm not right ALL the time but boy oh boy when it comes to that gnawing anxiety I get whenever Ryan is doing awesome - I just know the "bleep" is going to hit the fan and sure enough the day Jeff left for California for 1 week Ryan started having some serious teething issues thanks to that "bleeping" final 2 year molar!!! He was fairly miserable throughout the day but the real heavy screaming he saved for the night time (generally right around the time I found the sweet spot in bed and got all cozy).



Nothing I mean NOTHING gave him any relief unless of course I was holding and cuddling him. Didn't matter to him....if it was 10pm, 1am, 2:30am, 4am...you get the picture. Advil and Tylenol just wouldn't cut it - Momma's cuddles on the other hand - well they must be magical! Hahaha... Wouldn't you just know it the first night Jeff was home he was pretty much back to normal and slept through the night for the first time in a week! *sigh*

As typical with Ryan once he was over his pain and trouble he was back to amazing us with his tricks! He can bum scoot so easily now – it’s SO amazing to watch! His pulling up to stand is off the charts!

What I love most about his developmental explosion in the past few weeks is watching his face and listening to his excited squeals! He knows darn well what he's doing and man is he ever proud of himself - that alone makes my heart so happy! Just listen to this:


And here he is again same day actually turning around in his crib – so awesome!


So that’s the fun and exciting news…here’s the bad news: Ryan has now been put on the autism spectrum. I don’t suppose its bad bad news…it’s certainly not unexpected. Since Ryan was a baby I had been asking his regular pediatrician about diagnosing him with autism. He’s theory was why add another diagnosis to his already long list – what will it change? While I can see his point (and believe me I have the utmost admiration and respect for this doctor)…I don’t agree. What it changes for Ryan is being entitled to additional therapy. This is good and bad. Good of course for Ryan…bad for Quin. I’m already drowning in guilt for the time, effort and energy that goes into Ryan. Quin definitely get’s her special time and is extremely loved and cared for but I just always feel that it’s never enough. I feel that for both of them…God if I could just clone myself or add a few extra days to the week or hours to the day that would be just perfect (I'm sure parents that have "typical" kids feel that too)! Let’s face it…that’s not going to happen.

So how did Ryan get put on the spectrum? Well, on Valentine’s Day (of all days to give me the news – geez) Ryan had an appointment with the developmental pediatrician (it’s the 3rd time he’s seen her). She feels that even though he is visually impaired (which comes with its own autistic like traits and characteristics) and developmentally delayed he doesn’t act like he’s “just” VI and DD. Any other child who is VI or DD will still respond to their name, be much more socially interactive, make more eye contact and smile more. Ryan also rocks…a LOT and has some repetitive type behaviours. Appointments like these ones are hard. The doctor observes the child in an environment that is unfamiliar to them for a minimal amount of time and feels they have a diagnosis. While I’m not disagreeing with the ASD thoughts I did feel the need to defend Ryan. I made sure she knew that he does at times respond to his name and things like “bottle” and “up” and “more”. I told her that he will lock on my face from time to time and even smile. I made sure she knew how well he played and explored things. How curious he has become with his surroundings. Perhaps I came off a little strong at times and had a “back off bi*ch” demeanor but hey…I’m his Mom – and as many of you know…you just don’t mess with a Momma! So what additional therapy does this entitle Ryan to? I’m still in the learning process of it all but there is ABA and IBI.

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Here is what ABA is:

What is Applied Behavior Analysis?
Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.

Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior.

As mentioned, behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism – from toddlers through adulthood.

These techniques can be used in structured situations such as a classroom lesson as well as in "everyday" situations such as family dinnertime or the neighborhood playground. Some ABA therapy sessions involve one-on-one interaction between the behavior analyst and the participant. Group instruction can likewise prove useful.

Here is an explanation of IBI Therapy:

What is Intensive Behavioural Intervention?
Children with autism face a number of challenges–poor social interaction skills, communication difficulties and developmental delays.

Intensive Behavioural Intervention (IBI) can help some children with autism. It's a structured approach to breaking down the barriers that isolate children with autism from the world around them.

What's involved?
IBI professionals work with children with autism– either one-on-one or in small groups. They use systematic methods derived from principles of Applied Behaviour Analysis to promote development and change behaviour. Research tells us that IBI should be commenced early because very young children can gain the most from this approach.
IBI is intensive. It typically involves between 20 and 40 hours of direct service per week. IBI is individual. Program goals are based on a thorough assessment of each child's unique strengths and needs. IBI is practical. The focus is on developing the skills each child needs for greater independence.

Who is eligible for IBI?
The program is designed for children with Autistic Disorder or a disorder considered to be towards the more severe end of the autistic spectrum. An assessment by an IBI program provider is required.
What role do parents play?
Parents are critical to the success of IBI. A parent training component helps parents assist their children in reaching their goals.

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The tricky thing with IBI (from what I’ve been told by the developmental pediatrician) is that if they find Ryan not to be eligible (ie. Not on the spectrum) he will be taken off the wait list and never allowed back on. It’s all still very confusing and overwhelming and I’m not sure I fully understand what is going on or about to take place next.

So since we've got that new stress to deal with why not add a little more right! We will be starting Ryan's Vigabatrin wean this Sunday, March 3rd. February 27th was his 18 month anniversary of being on it...standard course of treatment is only 6 months. A typical wean is about 6 weeks. There is absolutely no way in heck that I would wean him that quickly! I have done up a wean schedule that will take just over 10 months (42 weeks) - he will be completely off Vigabatrin just before Christmas. His neuro thinks I'm a little nuts but he also understands and respects my intense need and desire for a record breaking slow wean! As I've mentioned before I am terrified of his horrific Infantile Spasms coming back I am also afraid of new seizures which will no doubt start up once he is off the med. It could be days, weeks or months once he's come off the drug we just don't know. Some who have come off are seizure free for years before something new starts up. Vigabatrin is really only used to treat IS but his neuro does feel that it is also keeping the additional activity at the back of his brain (the occipital lobes) at bay. What makes this new chapter in Ryan's life even more frightening is that both his epileptologist and neurologist want Ryan to go maintenance med free during and post wean. Not the norm when you have a child with symptomatic IS but they are also believers in not over medicating. So we wait and see what happens and then medicate accordingly. I'm so scared that Ryan is going to suffer and also that he may lose all the skills he has should the seizures start up. There is a big fear that if the IS starts up again or new ones start we may not be able to get control of the seizures. The good thing about the wean is that it's possible Ryan may come a little more "alive". Vigabatrin causes a bit of a fog on the brain and it also creates a bit of low muscle tone. His neurologist says not to expect any change in either department but there are lots of people I've spoken to who have weaned their little ones and seen great things. In a sense Ryan has been self weaning since he began the med. His dose has never been increased even though his size has - he is about 10-11 pounds heavier than when he started. This may explain how amazing he's been doing lately...some of the fog may have already begun lifting during his own slow, self wean. So yes, I am excited to see if he progresses more as he get's deeper into the wean but I of course have many more fears about seizure control etc...if bad things start happening.

I fear never seeing this gorgeous smiling face again:


Please pray!

A (few) weeks to remember!

WOW!!! WOW!!! WOW!!! What a great few weeks we've been having!!! :oD

On January 16th, Ryan broke his mobile! He had been getting up on his knees (by balancing the back of his head on his crib "walls") to play with it. Occasionally, he would pull on it and pull it right down. This day he snapped the arm right in half!

My Dad was able to fix it and I added some heavy duty duct tape to it but it only lasted a few more days. :o(

This video was taken on the 20th of January - he was trying so hard to pull up:


On January 21st (the 2 year anniversary of when we met with the neurologist for the first time), Ryan pulled up to stand for the very first time!!! He did this at Quin's craft table and fell a split second after he got upright but still...he did it!!! Such a HUGE feat! My Mom was with me to witness the amazing event (just like she was when he got up into a sitting position by himself) and oh did she ever WHOOP with joy! hehe...

On the 24th of January, he pulled to stand for the first time in his crib!!! This to me was what I had been wait for...that moment when (as a Mom) you walk into your child's room and see them standing up in their crib peeking out at you and the world!

Standing in his (heavily padded) crib for the first time:

I think it was the day after this picture was taken that the mobile was done for good!

On the 29th of January he pulled to stand for a 2nd time in his crib and then later that night he pulled up on the couch - first time!!!

Standing at the couch for the first time (look at Quin smiling at him):

Since then he's been pulling up on everything and anything! The other night we were playing on the floor when he tried pulling up on my leg! This "inch"stone is so significant to me because for one it shows he physically is able to do it (with a lot of work - at times his little arms literally shake with the effort of pulling). Visually he's motivated to do it! Cognitively/neurologically he's knows he wants to and CAN do it! If he's too far away from something once he's pulled to stand he will walk his feet forward until he's in a comfortable and stable position - it's a beautiful thing to watch! Here is a little video of him in action (what a difference 10 days makes):



The last 10 days of January were easily the most amazing that things have been in the last 2 years (relating to Ryan). His mood was SO fantastic! Not a day went by when he wasn't smiling and or laughing and giggling! He's been getting a little grumpy the last couple of days though as his final 2 year molar is still giving him a world of trouble. There are now 2 corners waiting to come through but they just won't!

This video here is without a doubt the most touching thing I've seen in a long time. Ryan woke from his nap on January 30th and for some reason Quin wanted to go up to see him. This isn't something she normally does - ever...so I grabbed the iPad and started video taping the monitor to see what she was up to. What happened next took my breath away - it's such a sweet moment - sweet and smart little Quin understanding the magnitude of her brother's accomplishments - couldn't not love them both anymore:



Here is a picture taken from the monitor about 5 minutes or so after the video was taken (at the other end of his crib)...I'm still just so emotional about it all (and proud and needing to share)! :o)

And then there's this one...taken today (February 2, 2013):

Like I said it's been a great few weeks. If you had told me 2 years ago that I'd be feeling this fantastic I'd have looked at you like you had not 2 heads but 5,371 heads! The memories of 2 years ago are still very raw and I expect they will be for some time to come...but like with many things time does heal and you move on - after all the past is the past. I wish however that given all the exciting things that have been happening lately why have I been plagued by this gnawing anxiety?!?!?! I'm not sure but I'm only assuming it's because when things are going so great they generally crash and burn soon after. I'm not trying to sound like a drama queen...if you've read the blog you know what I'm talking about. Ryan can have these great spurts of development and happiness then not long after all h*ll breaks loose.

Time will tell and we'll see...

Bringing in 2013 with a little pneumonia

Yup, that’s right…Ryan has pneumonia. The bright side is you'd never know it! He’s playing and happy and so animated about life – it’s amazing! However, when he started coming down with it he was miserable. Just so sad and weak. For 2 straight days he wanted/needed to be held constantly (not that I'm complaining)…the second I put him down he would fall apart. As most of you know with pneumonia comes a fever. Ryan has never had a fever believe it or not in his whole 2 years until January 3, 2012. He only hit 101.3 but it was enough to send me into a full blown state of panic (fearing a febrile seizure). I’ve never pumped Tylenol into a little one so fast in my life. Thankfully it did come down! Right now he’s on some heavy duty antibiotics to clear everything up. I’m just hoping his little tummy does ok on these meds (got him on some probiotics to help out)!

So that's how we're kicking off the new year...let me update you a bit on how the end of 2012 went!

On November 30, Ryan's endocrinologist upped his thyroid meds a bit. It wasn't long before we again saw an increase in alertness...a better more stable mood and strength. On top of his thyroid increase from his endo, his pediatrician upped his iron dose - this also helped with all of the above. While I'm chatting about it I thought I'd jot down his daily meds as I've had a couple of questions about what he takes and when.

With Breakfast
Prevacid - 5ml (for reflux)
Vigabatrin - 750mg (for seizures)
Polyethelene Glycol - 8mg (for poop)
Iron - 1ml (he has low iron levels)
B6 - 50mg (for mood and overall neuro development)

With Lunch
Iron - 1ml (he has low iron levels)

With Dinner
Levothyroxine - (different amounts on different days)

At Bedtime
Vigabatrin - 750mg (for seizures)
Melatonin - 3mg (to help him fall asleep - but I'm going to start weaning him soon)

Right now he's also taking his antibiotics 2 x's a day as well as a probiotic supplement 2 x's a day. He also has 2 puffers as needed. Not too mention Tylenol and Advil to help him get through the teething (1 last molar to go)!

Here is a summary of all his amazing "inch"stones (and 1 awesome one from Quin) in 2012:

December 23, 2011 (14 months): Lifted his head for 4 seconds while in
semi-crawling position
January 9, 2012 (almost 15 months): Sat unassisted for 4-5 seconds
February 8, 2012 (almost 16 months): Sat unassisted for 42 seconds
March 14, 2012 (almost 17 months): Made a "beh" noise
March 17,2012 (almost 3 years): Quin pee'd on the potty *that's right - it happened on St. Patrick's Day*
March 26, 2012 (17 months): Went from tummy to sitting
April 22, 2012 (18 months): Found Ryan sitting up in his crib
May 17, 2012 (19 months): Put a piece of food (cheese) in his mouth
June 19, 2012 (20 months): Started sitting up in his bouncy seat in the bath
June 20, 2012 (20 months): Fed himself a veggie stick
July 25, 2012 (20 months): Started tiny butt scoots
September 28, 2012 (23 months): Got up into sitting from lying on his back
October 2012 (2 years): Started spinning on his bum to find his toys
October 29, 2012 (2 years): Stood unassisted for 3 seconds
December 15, 2012 (26 months): Held his bottle all by himself

December 24, 2012 (26 months): Butt scooted 4-5 feet
December 25, 2012 (26 months): 3rd molar finally popped through *Merry Christmas*
December 27, 2012 (26 months): Caught Ryan on his video monitor up on his knees batting away at his crib mobile *Happy Birthday to me*

December 31, 2012 (26 months): Butt scooted towards me when I asked if he
wanted his bottle!

The other great thing about 2012 is that Quin has really taken more of an interest in Ryan and even at times he has been curious about her - makes my heart feel so cozy when I see them together!

I thought I would take a look back at Ryan's appointments from 2012 as well and total them all up. His doctor appointments include: family doctor, pediatrician, neurology, endocrinology, ophthamology, GI and ENT. The therapy appointments include: physiotherapy, occupational therapy, music therapy, speech therapy and vision therapy.

Doctor: 54 appointments
Therapy: 163 appointments

So where are we you might ask with regards to weaning him off of Vigabatrin. Well, considering I'm still sitting here typing away it's safe to say it hasn't happened yet. When it does I'll be in a straight jacket and heavily sedated I think. It'll happen...it has to but it's still "not time" yet. I have a couple of wean schedules all ready to go in Excel and there they will be...till I'm ready.

I wanted to share this little video with you all (it was taken yesterday on January 10th, 2013)..it's not the best as I did end up cutting Ryan's head off but was by myself and had the iPad propped up on Quin's craft table so it's the best I could do.
Yesterday was a good day...probably the best I've had in a long long time with both wee ones. I was a duty Mom in the morning at Quin's school and had so much fun. All the kids are so great to be around...the teachers are just so amazing and the other duty Mom's are such wonderful people...it's just a happy happy place to be and I love it! Jeff and Ryan spent the morning together and had a good time so that made me happy too! Later in the day, Ryan was something else. I really don't even know how to describe it..he was Mr. Personality and Mr. Curious all rolled into one. After seeing him feel so poorly at the beginning of his pneumonia I was on cloud 9 with what I was seeing last night. Between the two of them (Quin who was just super awesome herself) and Ryan my heart felt like it was wrapped up in the coziest blankets ever...it was a happy happy night. This might sound a little twisted but I was really happy about with what this video portray's...a genuinely ticked off Ryan. I did a little physio with him throughout the day...this was taken in the evening and oh lordy was he ever mad at me!!! You can see once I finished that one tini tiny little exercise how he was ok with the world again...little bugger. In the background you can see sweet little Quin working away on one of her puzzles...it was just a good good night! Love my little bums so much!



Happy New Year everyone! :o)

Oh hello November where did you come from?

Ok, so here's what happened...October arrived...I blinked then BOOM all of a sudden it was November...!!! I blog really well in my head - it's finding the time to sit down and type it all out that's the problem!

October was filled with all kinds of wonderful things! Quin, myself, my Mom, sister and one of my nephews all went to The Wiggles concert! It was also Quin's very first train ride (I'm still trying to figure out which she had more fun doing)!

Ryan's GI appointment came and went. All the doctor said (after making us wait over 2 hours for him) was to just keep doing what I'm doing for him. Not kidding...the entire appointment took less than 5 minutes. I was highly unimpressed to say the least! But on the bright side what I am doing seems to be working *knock on wood* so we'll just keep up with the poop meds and high fiber fruits and veggies and hope it all keeps going well for him.

A different issue for the big guy has been his pesky 2 year molars. They have been causing him grief since the summer. Two top molars (one corner of each) finally popped through in October with one more corner on just one tooth popping through now (mid November). Nothing yet on the bottom. He's been in agony off an on - so unfair. His speech therapist told me that because he isn't chewing food (he can only manage puree'd food right now) his tissues etc aren't being stimulated enough to encourage tooth growth.

On the 15th of October Mr. Tough and Tenacious turned 2 years old!!! He had a good day and enjoyed opening up his presents (with the help of his big sister Quin). He wasn't quite as happy with the cake or ice cream though!

Here's your card Ryan!

Checking out his high contrast wrapping paper!

Yum...?!?!?

On the 29th *drum roll please* Ryan stood unassisted for 3 seconds during his PT session!!! It was the neatest thing to see! I was super happy of course - driving home from the appointment is when it hit me how important that feat really was - BAM the tears started falling!

Unfortunately, since that day Ryan's health and mood have been suffering. I haven't been able to keep up his PT work at home and his sessions out of the house haven't been much more productive. He came down with a minor chest infection early November, seemed to go through a bit of a growth spurt and has had increased irritation and frustration from his teeth. All of that is what I hope is causing him to be a little weaker and not as willing to work consistently. I say consistently because there are the odd moments where things kick in and come together and he seems "ok". Then he'll turn around and seems to have regressed in a way. IDK..."I don't know..." - it's the term we use a lot when it comes to Ryan - lol!

Also in October - Jeff, Ryan and I had a follow up appointment with the neurologist regarding his VEEG from September. We discussed how to handle the ongoing treatment with his Vigabatrin. Do we keep him on it or try to start weaning him? To put things into perspective on how I feel about weaning him off his miracle drug...I would honestly feel as if I was pushing him out of an airplane with no parachute. The thought of him coming off of VGB makes me very very ill. A typical Vigabatrin wean takes 4 - 6 weeks. Ryan's neuro is so respectful of my anxiety that we have worked out a wean plan that will take just over 1 year to complete! I asked if that has ever been done before and both he and the neuro nurse said "NO". Ok so I'm a little paranoid. He's my "silly little bum" who I love to bits and am terrified of him suffering when he comes off the meds. It's possible he will be fine in that the Infantile Spasms probably won't come back. Most kids out grow 'spasms' by the age of 2 years. BUT the chance is still very real and very there that they will come back. I just can't let him go through that again. The other issue is that Ryan does still have a lot of activity at the back of his brain (in the Occipital Lobes). His brain is basically trying to have a seizure but is unable too possibly because of the Vigabatrin or possibly it's just not 'ready' yet. As he get's older the risk of Ryan having new and different seizures is very real and big. So for now we're going to wait on the wean (unless his next ERG on November 28th show's retinal toxicity) until his teeth are in and he's comfortable and not dealing with any external aggravations.

Enough of that heaviness...let focus on the sweetness of both my kiddo's!

In October, Quin said a couple of things that caught me off guard. One day while I was doing some PT with Ryan, she told me she wants Ryan to chase her and then she said, "He will run with me". She wants what every little one with a sibling wants...someone to play with. On the day of his birthday as we blew out his candles she asked "Can Ryan speak now?". Just when you think your heart can't break anymore... Last weekend I was a "bit" worried as I was watching Ryan...he did this weird snapping of his lower jaw thing so I instantly panic thinking it's some possible seizure about the take hold of him. Quin grabs my arm that was reached out to him and says, "Don't worry Mommy, he's just trying to give you a kiss." Really? Does it get much more innocent and sweet than that. I really need to get a grip somehow before I send Quin spiraling down into Crazyville with me!

Given all the *bleep* that Ryan has been dealing with in the last month or so he's still managing to amaze and impress. His interest in his toys is incredible. He's playing SO much and he's able now to spin around on his bum using his feet to look for his toys...LOOK for his toys - I love being able to say that! He's also making some new sounds...lots of "mmmmmm" noises are coming from him and I swear when he makes a "mmmmuuuuuuummm" noise he's trying to say "Mommy"! Maybe I'm just being hopeful but I don't know....it could be!

Here is a little video taken about a month ago of Ryan looking at and getting one of his favourite toys!



Just a "tiny" little side note. November is Epilepsy Awareness month. This ribbon was made for Ryan by one of the epilepsy Mom's I know through Facebook. If your on Facebook check out the page she has created for her sweet boy Connor - it's called: The Adventures of Connor Man - he's a tough little dude with an equally tough little Mommy!

Here is a video that I have debated posting purely for selfish reasons. I let Ryan down and am so very angry that I failed him. 15 months went by before I could look at this video. Ryan went through approximately 1.5 months of hell (9 months old - 10.5 months old) before he was diagnosed with Infantile Spasms. Due to his neurological impairment, vision impairment and hypotonia I just figured what was happening was due to his already existing conditions. Never in a million years did I think he was having seizures/spasms. I certainly had never heard of Infantile Spasms. For the rest of my life I will be constantly questioning "what if"...what if his IS had been caught and treated sooner. Would he be doing better developmentally? He certainly would have suffered less. I know that that is part of the reason I am so hyper paranoid about every little new or different movement or sound he makes these days. I failed him once by not knowing he was suffering with IS...I won't make the same mistake twice. If that means driving his neurologist insane with lots of video's and emails about anything that seems off then so be it. I will not screw up again. I'm not looking for pity or comments like "you didn't fail Ryan" etc... It is what it is...I should have known. The beauty of the entire situation is that you can't dwell on the "what ifs"...I allow myself to do so only once in a blue moon (apparently the moon is blue tonight). For Ryan the best thing is to keep moving forward and go go go!

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!