Wednesday, 26 February 2014

The adventures of Ryan's crib and new bed!

So back in May 2013, Ryan fell out of his crib - HARD! His crib was already at his lowest of the 3 settings so we completely dismantled the entire thing and put the mattress directly on the floor inside the crib. This bought us a lot of time while we figured out what to do next. Due to his low vision, global development delays and (possible) autism, Ryan has absolutely NO safety awareness. He needs to be kept in a enclosed space at night to keep him safe and in a way force him to sleep. I have no doubt that he would scoot all over his room looking for things to do if he was in a regular old bed. It would be a nightmare!

Ryan is a very active child! He wiggles and squirms and gets himself into the strangest of positions. He started getting into the habit of wedging his legs right up to his thigh in between his crib slats (see below - he was jammed in there so tightly I had to grab a couch cushion to hold up his leg while I figure out how to get him out - grabbed the camera too of course!):

In order to prevent that from happening again my clever Mom came up with this:

Pool noodles cut to size and split then wrapped in duct tape to match the rest of his room (high contrast colours to stimulate his vision).
He loved the latest modification done to his crib as you can see:

But then things like this started happening again (yes he is totally and completely stuck - and yes I'm that horrible parent that quickly grabbed her camera to document these events - lol):
So then we did THIS - lattice screwed right into the crib frame all the way around his crib:
No more escaping limbs!
Safe and happy again!

We knew he couldn't stay in his crib forever but we also knew as I mentioned above that Ryan has no safety awareness and that something needed to be done soon to keep him safe in the future and give us as his parents peace of mind.

We looked at tons of different options. A lot of the special needs beds out there are much too involved (making them pricer) than Ryan would need. Some of the simpler ones wouldn't work for him because he likes to stand and jump in bed and they just wouldn't be safe enough for him. There were 2 that we were considering but were still very much out of our price range! I mentioned our dilemma in the "Make It Tips for Special Needs" group on Facebook and with their help decided upon converting a bunk bed frame into a super sized crib. Luckily for us my amazingly talented (and patient) Dad offered up his carpentry skills - we told him our plan and set him loose!

This is the bunk bed we chose. It is from a store called JYSK and is called the "Jayden Bunk Bed".

My Dad started first by turning the top bunk end upside down and securing it to the bottom bunk end:

Once both ends were secured the side rails were installed:

Before the doors could be built the head and foot boards needed to be trimmed and sanded so the doors would sit flush with the rest of the frame:

We then needed to decide how many slats to put in each door panel. We took a look at 5 slats in the below picture but felt it wouldn't be airy enough for Ryan and would be frustrating for him to look through:

We ended up going with 3 slats in the middle. Here you can see the detail and hard work my Dad did on the doors as he had to inset the slats into the frame - talented man I tell you!

All painted!

In order to keep the bi-fold style doors firm against the frame (we thought up of every possible solution) my Dad contacted a local magnet distributor. He explained what he was working on and he offered up a couple of magnets to 'test run'. The first were a touch too weak and the other's were a touch too strong! I mean really strong! It's actually so strong that my Dad had to reinforce the edge of the doors with steel for when we tugged on the doors to open them. The steel was also painted to match the frame of the bed.

Before you look at the next picture I need to explain it! While the bed was coming to the end of it's completion I decided to test Ryan in his crib by taking off the lattice. I wanted to see if he was still keen on getting his legs wedged in between the slats. Sure enough he was and one of the last times he did it he was really REALLY stuck. We're talking screams so loud I thought for sure he had broken his leg. The bruising that was caused wasn't pretty. Funny enough this happened just before I was heading over to my parents place for one last look at the bed before it was dismantled and due to be brought over within the next few days. I told my parents what happened and we realized that we had to come up with something to keep him even safer - oh this kid - he's lucky he's so cute! Lol... We thought of acrylic, some form of mesh, anything! We decided to keep costs nice and simple and used the lattice that had been on Ryan's crib.

By the way I need to add that my parents absolutely refused money at all for this bed - this was their gift to us and Ryan and my goodness we couldn't have asked for anything more amazing! We were then worried about the cost of a really good mattress for him and thankfully my wonderful in laws took care of that for us!

Next problem was that the lattice was white. It wasn't safe to paint and the brown colours that are out there in this type of material wouldn't match the frame. Since the white is SO white against a very dark brown frame I decided to work with that. To me it kind of resembled a hockey net - or at least I felt that I could make it look like a hockey net! So we went with a hockey theme - pretty sure Jeff was pretty pumped about that idea as my original idea was to make the bed look like a railway crossing and to have the "I think I can, I think I can..." (from the Little Engine That Could) saying above the bed.

Below is the final product before it goes in his room and get's "dressed":

This is all a VERY simplified version of all the work my Dad out into this bed and the combined thoughts of myself, Jeff and both my parents. As my Dad said "things have to be thought of 65 times when it comes to Ryan". He's right! I'm not sure how many times we thought we were coming to the end and then would say "oh, wait, nope that won't work or that has to be modified because it won't work for Ryan"!

Once my Dad was done the construction of the bed I went to work on "hockeying it up"! It was so fun! I created a goalie crease out of blue bath mats, sewed them together then added red Christmas ribbon around the edges. His old crib bumpers were cut and sewed to fit the new bed and vinyl covers were then made. Goalie pads were purchased at Target and the helmets came from the place my Dad volunteer's at as well as from one of my nephew's. Then I wanted a little something extra above the bed and thought "Ryan's Revenge" sounded like a cool hockey team name. I downloaded the Bauer hockey font and created a stencil in Word. My Dad then took that stencil and created the letters out of wood. This created an awesome sign above his bed - complete with a night light puck which is attached to the sign and looks as if it is cracking through the sign!

Here is the absolute final product! We LOVE this bed so much and are so incredibly appreciative of my Dad and all of his hard work. He put blood, sweat and I'm sure at times a few tears into this project. If you know my Dad he builds things to perfection - for his special and amazing little grandson this bed had to be and IS above and beyond perfection!

Thursday, 2 January 2014

PT, EEG, IEP - oh my!!!

Happy New Year everyone!

January is finally here. What that means for things in this house is that I can now register Ryan for junior kindergarten. Will I? Probably. Will I send him? I have no idea. The start of the new school year is 8 months away. Where will Ryan be at that point? Walking more? Talking at all? Will we have found a means for some form of communication? For any parents sending your child off to school - where you aren't there to protect them from the big bad world is a scary feeling. Trying to wrap my head around registering my 40" and 36lb "infant" for JK isn't sitting well with me at all.

This morning I printed off the 4 page form and as I sat at the kitchen table feeding Ryan his breakfast I completely and totally fell apart. I very rarely stop to think about our life situation. There's no need as it's our normal. When I realize that it's not normal are days like this. This morning was tough. It takes a lot for me to allow tears to come in front of the kids (or better yet for me to be so powerless to stop them) but I was just feeling so overwhelmed with a rush of thoughts of fear and stress there was little I could do. I quickly took to social media and posted some questions in a couple of my special and even non-special needs groups. I was flooded with lots of support and information from those who have been there or are about to go through the school thing themselves. I have never met any of the people who have offered me support over the years including today and likely never will but I am SO incredibly grateful to them all. I gripe and complain about technology and the pain in the a** of it all...but in all honesty things like the power of social media have offered me a place to go. A place full of people like me. A place of comfort and acceptance and a place full of information from those who are a little further along in their journey than I am. I like to think too that in the 3 years we've been living this "norm" that I have been able to help the odd person here and there.

When it comes to sending Ryan to school I have so many understandable doubts and concerns. He is mentally, physically and visually impaired. How can I possibly send him off into the world without me??? I can't. How can I ever trust a stranger to care for him and keep him safe the way myself and his family do? Maybe I'll feel different in 8 months. Maybe...

2011, 2012 and 2013 were spent learning and living in abbreviated terms like PT, SLP, EIS, EEG, MRI, ERG and so many others. It looks like 2014 will be spent learning about SERT (Special Education Resource Teacher), EA (Education Assistant), IEP (Individualize Education Plan) and probably lots of others I don't even know about yet! I've been dreading the flip into this part of the special needs world. I don't HAVE to send him...kindergarten is optional. He might benefit from being around other kids or it might be the worse thing for him. I don't know! I don't know! I don't know!

And the roller coaster continues...

Tuesday, 12 November 2013

I've finally met my son!

I'm not sure who I was kidding when I said to myself, "Sure I can maintain a regular and active blog plus be a Mom to 2 kids under the age of 4 years"! HA - perhaps I was a little delusional but hey sometimes that's one of the best ways to get through life right! RIGHT?!?!

So I unintentionally took the summer (and half of fall) off from blogging. The whole time I swore to myself that I would get back at it once Quin started kindergarten. I figured I'd have a couple of hours twice a week of a little down time while Ryan napped and Quin was in school - perfect time to blog! Or perhaps a perfect time to do a little cleaning, organizing, de-cluttering, fold a mountain of laundry - and yes a little time to sit down to catch up on one of my PVR'd shows *guilty grin*! In between all that though I was changing a poopy bum. Ryan has taken to pooping mainly around nap time which of course either wakes him up or keeps him from falling asleep because he's waiting for it to come! This kid loves to poop let me tell ya! But he also LOVES his down time so even if he's not napping he's at least chilling in a dark room resting his vision and his body which is very much needed when you wake for the day between 5:30am and 6:30am.

It has been over 5 months since my last post - yikes! Sorry to those that follow Ryan's story! I've been super low energy due to (without this sounding like a pity plea) being a special needs Mom. My 37 year old body feels more and more like a 97 year old body. My back, hips and ankles have all been feeling the strain of lifting and carrying Ryan's 36lbs...40" body. I've been checked out and xray'd but nothing showed up with is good but frustrating because I'd like an answer/solution to my aches and discomfort. Thankfully Ryan is starting to get a little more mobile. Which you can see here - it is so incredible - I really have no words so just watch!!!

This here he did just a few weeks ago - AMAZING! Once he was upstairs he climbed up onto the stool in the bathroom Quin uses to brush her teeth and wash her hands! Crazy!

When I left this blog off last time Ryan was going through a screaming, sad, angry phase. That in total lasted about 5 weeks. Once it resolved he managed to get through the summer months his typical happy, easy going self. He even started to make some new sounds!

Unfortunately, in mid September into early October he went through another very bad fit. This one lasted only 3 weeks but it was 3 weeks of constant screaming and sadness. The ER chalked it up to poop back up which the pediatrican disagreed with - so fun when doctor's "agree" on things...ggrrrr! Myself and those close to him (aka family and his therapists) feel he went through a growth spurt. He definitely felt bigger but what was scary for me was that he became quite floppy and much more unbalanced and uncoordinated than usual. I was so afraid it was his brain going batty! I'm certain though it was a spurt as (knock on wood) he's been awesome since!

Since the last post Ryan has had 2 EEG's. Things like the below video is what keeps happening. To some it may look like "normal" behaviour. To other's who know epilepsy may say "huh, yup for sure that's seizure activity". His EEG's have come back clear of seizures but he's never had these episodes while hooked up so it's very frustrating not knowing what they are:

The good thing is that he hasn't regressed. At least not physically as the walking video at the beginning of my post confirms. What is worrying me though is that he hasn't babbled like he did above in almost 2 months now. He seemed to be on a roll but now there is nothing. What I'm hoping is that his brain is so busy learning all these new physical skills like balance, walking etc...that it needs to take a break from the verbal part for a bit. Another factor could be that his left tube came out of his ear and his ear drum is slowly filling back up with fluid which could be affecting his hearing which could affect any noises he wants to make. We see ENT again early in December to see how things are looking (his right tube is half out as well).

What has been amazing and has also kept me from freaking out too much is that he is becoming much more social. No matter where I am, Quin is or Jeff is he always seems to come to us. What I mean is that I could be in the kitchen doing something and he'll scoot right into the kitchen to "say hello". He'll just sit there at LOOK at's so very surreal! I finally feel after all this time that I'm finally meeting my son. Let me tell you - it's an intense thing to experience.

Wednesday, 5 June 2013

Ryan's Rage

Oh me...oh boy sure can cry! :o( I hate to start this post off all doom and gloom but it's really been a rough few of weeks for Ryan (and the rest of us).

The day after my last post the poor thing was up in the night crying...slept a wee bit then woke screaming around 6:00am and didn't stop until 8:30am. The reason he stopped? He passed out cold. From then on he would scream and pass out off and on all morning long. It was so sad. If he wasn't being held he would just fall asleep in the middle of the floor. By 11:30am my Mom and I were on the way to the ER with him while Jeff kept Quin company at home. When we got to the hospital I noticed his ears were leaking pinky coloured fluid. :o( Oh the poor thing - it was an ear infection (confirmed by the best ER doc we've had to date)! Since his tummy was still suffering the effects from the Biaxin (antibiotic) from his bronchitis a couple of weeks prior it was decided to just put him on some topical antibiotic ear drops. Thankfully they seemed to do the trick!

In the middle of all of this going on I received the results of his blood work from mid April and was told his iron levels are still quite low...the lowest they had ever been. His pediatrician did up some calculations and found that he is only getting 1/2 the amount of iron supplement he should be - YIKES! That had to be upped which of course means an increase in poop issues as iron supplements cause constipation - ugh as if he doesn't have enough poop troubles due to his hypotonia! Along with the iron increase it was also suggested to start him up on a Vitamin D supplement (in hopes of boosting his seemingly fragile immune system). Well after about a week of the iron increase he started to feel pretty uncomfortable so I backed off his supplement a little bit - seems to be helping.

On the holiday Monday, May 20th I put Ryan down for his afternoon nap when I noticed he was stepping, almost climbing on his bumpers. Hmmmmm....that's not good! Little bugger would just giggle when I said "Ryan, no!". I squished them down as far as I could then went to go tell Jeff what a goof he was being. I then turned on the monitor and saw that Ryan had moved to the other end of his crib and was leaning and wiggling along the edge of the top rail...before I could even THINK of saying "uh oh" he was over the edge and there was a sickening thud that very quickly followed. I quite honestly think my feet grew wings as I flew up the I was running he started screaming (never been so happy to hear him screaming)!!! When I got to him he was flat on his back just wailing. Oh the poor thing he was so scared. He didn't seem hurt although there was a bit of blood in and around his mouth - nothing serious seemed amiss. Unfortunately, since his fall he hasn't been himself.

During that first week after his fall I had Ryan at our family doctor once and the pediatrician 3 or was it 4 times...I can't remember. I had been in touch with the neuro nurse as well and even got in to see the neurologist himself. Everything seemed fine with him physically. Mentally and emotionally though he was an absolute disaster! The first week after the fall he was sad and only wanted to be held and cuddled. The second week and up to present day has been horrific. He has been having some serious serious rage issues! It's like he went to bed Ryan and woke this crazy, angry, out of control child who I've never met! The neuro said it could be behavioural (due to all of his conditions) or it could be an extreme case of the "terrible two's". Even though Ryan functions at an infant level there are parts of his brain that are very much a 2.5 year old. Since he can't verbalize his frustrations he could be acting out the 2's in a bit of a more severe form. It's so hard to say and so hard to experience. Jeff and I are praying it's just a phase - a short one at that because it's been scary and at times dangerous for Ryan and for anyone handling him. Even poor Quin got knocked around a bit by him. :o(

What's frustrating about how he's been feeling (aside from the fact that it's so heartbreaking not being able to fix what is wrong) is that he hasn't been able to make any big developmental gains like he had been doing back in April. He is currently 30% through his Vigabatrin wean but due to feeling so crummy and moody he's just not wanting to do much at all.

Cross your fingers for Ryan and all of us that this is just a phase - if not I may just have to rename this blog "Ryan's Rage"! :o(

Saturday, 4 May 2013

One small step for Ryan ... One giant leap in his development!

Alrighty, so it's been 2 months since Ryan's Vigabatrin wean was started. I apologize for the extreme delay in updating this blog - there have been lots of ups and downs and sick little ones ... Ryan is working on his 2nd cold in 1 month, Quin has an ear infection, I am at the tail end of a cold that started 2 weeks ago and Jeff woke this morning with a sore throat - the beginnings of the dreaded "man cold" - LOL! So it's been hard to get some computer time in! Let me give you the low down on how the first 24 hours of Ryan's wean went...

The night before I slept like horribly...I mean I sleep like "bleep" normally anyway (a trait my Mom passed down to me - lol) but this night in particular was extra crummy. I got up that morning and had some breakfast and a coffee then went to get Ryan. As soon as I looked down at him in the crib I started falling apart...when I picked him up I held him extra tight, looked up and said a little pray - down came the tears. I'll be honest, when I pray I really have no idea who I'm praying to and I don't know who you all pray to either...could be that guy they call God, a Buddha, the tooth fairy or Santa - whoever it is just keep it up - PLEASE! :o) So Ryan and I went downstairs...Jeff took one look at my face and just shook his head. I asked, "Do we have to start today?". His response was a quick "YES". I swear it took everything I had not to suck Ryan's usual morning dose up into the syringe...but I did it and this boy seems to be taking off! Here's a little run down on his accomplishments in the last couple of months.

So the wean started on March 3rd. On March 14th I was changing Ryan when I saw him looking at me. I don't mean he was just looking in my direction and seeing me...he was REALLY looking at me. I can't explain in words what exactly it felt like but I saw something different in him that made my heart skip a beat and produced instant tears. I would say it was this day when I first noticed the Vigabatrin "fog" lifting.

On March 23rd, Ryan pulled to stand against "his" wall (see below - picture was taken a split second after it happened) - very impressive because he did this with nothing to grab onto! On this same day he first cruised along the couch a little bit. Just a couple of steps but holy smokes was it ever neat!

March 27th, was Ryan's 6th sedated ERG in 1.5 years...ick! I hate that he has been sedated so many times but it's necessary to check for retinal toxicity. Here he is the morning I woke him at 5:00am to give him his meds:

On March 31st, while at my sisters place for Easter dinner my Dad was sitting on the couch with Ryan when my Mom called for me to come into the room. First thing that came to my mind was, "Please don't tell me he's having head bobs (spasms)!!!". Thankfully what I saw was something much MUCH better! My Dad was tapping on a pillow with his hand and Ryan was copying him!!! Not only that but he was taking turns! This was HUGE!!! Here's a little video for proof! :o)

On April 1st, I put Ryan in the bath fully expecting him to do his usual facing an end, corner or opposite wall of the tub. Instead of doing his usual "ignore Mommy" thing he turned himself around and faced me the entire time he was in there!!! I couldn't believe really was the strangest experience ever! The next night I brought my phone into the bathroom with me so I could take pictures just in case he did it again...he did and here he is:

The "inch"stones that happened on March 31 and April 1 say to me that he's ready and trying to communicate in his own way...this is VERY big for Ryan and all of us!

Now for the big news!!! On April 4th, at the end of Ryan's PT session his therapist walked him over to me (he does assisted walking with the therapists (or my) hands on knees/thighs and sometimes as low as his ankles). For his very last step his PT completely let go of him and he took that last step all by himself right into my arms!!! Now as I mentioned at the beginning of this post I'm a pretty crummy sleeper...I was also battling a terrible headache on this day so while I saw him take that last step on his own I did need verification. I sent a quick note off to his PT asking if he really did it and bless her for getting right back to me and assuring me that she did let go and it was all him!!!

Here is a super short video of Ryan cruising along our back window (his favourite place to hang out):

On April 5th, Ryan came down with a cold that hit him pretty hard. His cough started the day after and while this may make me sound like a horrible person I loved listening to him cough! Normally when he coughs its a weak little half cough. He's never been able to give it all he's got which I think is part of the reason his colds always settle in his chest. This time around though holy smokes he's been coughing a real big boy cough...full on hard getting all the junk out cough! Vigabatrin also causes decreased muscle tone so maybe just maybe he's getting a bit stronger too during this wean! What's crazy is that we're seeing all these changes and progress and his dose has only been lowered very minimally. Could his development lately be just him getting older and maturing or is the wean really making that big of a difference? Definitely a bit of both I'd say but I have no doubt that the lowered meds are for sure having a big impact on his beautiful brain! Unfortunately, the cold developed into bronchitis so he went back on antibiotics. :o( Since he had just recovered from pneumonia (in January) his doctor put him back on the heavy duty antibiotics and yikes he really didn't do too well on them this time. He got a funny tummy, lost his appetite and started having some noticeable (what I felt) seizure like activity. He had lots of body jerks and shuddering, twitching, sharp abrupt eye and head turns. At times he was really out of it - dazed, zoned out. When he would go through all of this he would whimper and also seem to get really tired and worn out. I took some video and sent off a few e-mails to his neurologist each one was met with the same answer - "I don't see anything concerning". Ugh... I put in a request to him for an EEG making the point that I felt Ryan should be monitored a little closely mid wean (and of course he'll get another EEG post wean). He agreed (or he just wants to shut me up) and will be putting in a requisition for a non-urgent EEG.

On April 11th, Ryan sucked out of a straw during his speech therapy session!!! He didn't just do it once - he did it a bunch of times!!! It was SO neat!

On April 21st, my sweet, sensitive and oh so feisty Quin turned 4 years old!!! The picture of her eating her cereal I took at exactly 7:49am - the time she offically graced this crazy world with her beautiful presence!

This girl I tell you is really something. I'm sure I've said before how its difficult of course to explain to her what is going on with Ryan and really there's no need to bombard her with things to think and worry about... She definitely is becoming much more understanding of what Ryan is able and not able to do. As you can see in the below video she loves being his little helper. There are times too when she'll rush over to him if/when he falls. Still though in keeping with her childish innocence and desire to have a sibling to play and talk to she does still ask "Is Ryan going to talk today?" or "When can he chase me?"

On April 24th, I noticed Ryan was making some very definite "de" and "be" sounds!!!

On April 25th, we flipped Ryan's car seat around so that he is now forward facing - a big step for my hypotonic little one! He is so incredibly long that it was just getting ridiculously uncomfortable for him to remain rear facing!

On April 30th, he took 1.5 solo steps during PT!!!

May 3rd, Jeff and I had an appointment to get Ryan's IBI assessment results - they were as we expected - DENIED. There was a whole huge list of stuff we went over and talked about. Basically what it comes down to (for right now at least) is that they require the child to at least function at the level of a 1 year old (which our little cutie does not - YET). He has been deferred for 1 year and will be reassessed. The good news is that he doesn't lose his spot on the wait list (which is about 3 years long). Where does that leave us now? He is still eligible for the ABA therapy - much less intense but still not something he could cognitively handle at this point. There of course is still a wait list for this but we could go private if we choose to. For now we have decided against additional therapy - at least with regards to the autism diagnosis. We will continue with what we're doing but at more "intense" level (at home - aka. free therapy) and try to bring him along a little more ourselves first. I will however be making some calls next week just to see where about's he is on the wait list for ABA.

Along with the news on this day, Ryan came down with another cold which included another horrible cough and this time a fever. Plus, his appetite is once again disappearing. Ugh... The day before he woke with his full blown cold I had taken him for a chest xray as he was still "purring" a lot - thankfully it came back clear! Hopefully this cold goes away quickly and Ryan can get back to feeling great again.

It's all been a very very exciting couple of months but the terror I was feeling watching him have some possible break through seizures definitely keeps me grounded (aka realistic)!

Thank you so much for following our little journey and again I really apologize for the delay in updates!

Please continue with your good thoughts, prayers and crossed fingers that he remains seizure free (and healthy).

Saturday, 2 March 2013

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, 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.


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.


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!

Saturday, 2 February 2013

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 - 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...