some definitions of ian's diagnoses: 1. distal arthrogryposis: describes congenital joint contractures in two or more areas of the body. Children born with one or more joint contractures have abnormal fibrosis of the muscle tissue causing muscle shortening, and therefore are unable to do passive extension and flexion in the affected joint or joints. (the distal part means it's in his feet). 2. severe functional communication delay: this refers to receptive and expressive communication. his understanding, cognitive ability to process...he is behind. we have seen huge progress since the spring, but even still he is considered severely behind. (as of july, 2014). 3. selective mutism: i'm not as concerned about this. they attribute this to some anxiety on his part. this is hwere some child psychologists thought he might have some autism; for his inability to interact and communicate (eye contact) - depending on the day, and who he is with, he presents as 2 different kids. but it has officially been ruled out, that he is not autistic. he exhibits some behaviour that is similar to some autistic behaviour, but he is not autistic. 4. regulation disorder of sensory processing - this is the big one to me. the sensory side of things - he's all over with this one. " It represents a definite entity that requires a distinct behavioral pattern for diagnosis. The diagnosis is not related to a child's intelligence but rather to a pattern of responses and behaviors observed over time. Sensory, motor (gross and fine motor), physiological (sleep, eating and elimination), behavioral processing and organizational (attention and affect, and overall behavior) responses are all considered. (Sleeping and eating difficulties can be considered symptoms of RDSP or as separate problems.) The disorders affect daily adaptation, interactions and relationships." there is no precise definition of this one....it has to do with regulatory...following is an extract to a book that tries to describe this disorder: http://www.jkp.com/catalogue/book/9781843105213/extract/ we have ordered a bunch of books referred to us by dr. golden. 5. dyspraxia: this is the 2nd biggest to me. (also known as developmental co-ordination disorder). Ian doesn't have the natural reflexes that most of us are born with, or are able to process. When he falls, his hands don't go out to protect him. the "impairment of the ability to perform coordinated movements." The Dyspraxia Foundation lists developmental co-ordination disorder, perceptuo-motor dysfunction, and motor learning difficulties as other names used for dyspraxia. 6. atypical febrile seizures: you all know he has seizures. it seems to happen once every 3 months. (1st noticed last September and happened as recently as august). 7. chronic sleep disorder: well, everyone knows this too. :) this isn't a complete picture - but it gives a bit of an idea :) if anybody was able to read through all this to this point, thanks!

ian's 2014 diagnosis

hello. information overload. not sure where to start. between casa (a child psychiatrist-dr. hapchyn), and the glenrose (a physiatrist - dr. watt (specializes in muscles) and a dr. golden who specializes in neurodevelopmental stuff and the feeding and swallowing team and the physical medicine team (both which include ian's orthopedic surgeon, another child psychiatrist, speech pathologist, occupational therapist, physiotherapist, dietician and social worker) and the stollery (pediatrician, neurologist, orthopedic surgeon, and gastroenterologist)...we've had some big appointments...:) it feels like such a network of people...and maybe its coming together. ians' unusual behaviour is not from seizures. autism has officially been ruled out. but now he has a whole host of complicated regulatory, sensory and muscle issues. that is his diagnosis in a nutshell. we have our work cut out for us. and a whole lot of research to do, and I've got to own his diagnosis. that's what I was told by dr. golden yesterday - the big wig who finally put stuff down to paper. so. i'm to tired and blah to even know where to start, so I included the paperwork for you to browse at your leisure. it's been a while since I posted :) hope all is well! we had a pretty good summer. thankful for everything and everyone! and hopefully i'll post picts soon....love you all!

we have had some big appointments this week for ian....updates on that when I have time:) just wanted to share keira's pict!

hi all! hope all is well, just an update on ian. his speech and cognitive capabilities have been improving but his behaviour has been...declining. he has 2 different kinds of episodes/behaviour - and they have been increasing in frequency and duration. we saw the pediatrician today, solely for this. we had been taking videos so we could show him the behaviour, but ian went into one of the episodes right in his office today. there is concern - and we will be having another eeg done as soon as we can get an appointment. we have a casa assessment next week - a psychiatric preschool assessment of sorts...its a number of hours, and they specialize more in regulatory disorders (which ians gastroenterologist and pediatrican think is 1 possibility); and we're waiting to get into the glenrose for a pas assessment (which is usually more for autism specturm disorder, which ian's pediatrician thinks is another possiblity) as well (have been waiting since he was 3...he has been referred by 4-5 different specialists, but it is hard to get in. they cover the territories, northern bc, and I think northern alberta and northern Saskatchewan). I have spoken with the director a couple times and I don't know if its political stuff or what....but ians pediatrician is not very happy with them. I called the director myself again today, and I went over some info with her and she asked who ian's pediatrician was...and she sighed and knew him. by name. she said he is a good pediatrician (though a pain in the butt for her), and that he will probably call her today about ian. she says he is good, follows up, and if they miss anything he usually reminds them. it made me more thankful to realize that we do have a good pediatrician, who isn't scared to bug people a bit:) that is not to say that ian has any of these...but his behaviour is alarming. and his behaviour isn't consistent. some of the glenrose assessments have shown 2 different sides of ian and his behaviour. at the feeding and swallowing clinic the psychiatrist thought strongly for autism spectrum disorder because he wouldn't make eye contact, did not initiate or play with keira, and had strong tactile aversions. then the physical medicine clinic sees him smiling and interactive. dr. harris (pediatrician) saw both sides today, so that was nice, or not nice. :) anyways, I think I have some of my jargon or terms mixed up...but I just wanted to share an update. a couple months ago ian had some more seizures, but they appeared to be more of a febrile seizure...the last eeg we had was normal. he has improved in a lot of ways which we are thankful for! bowel movements and sleep are still elusive, but it is awesome to see ian understanding and communicating more! we are loving it:) we have been referred twice to the stollery sleep clinic, but that is the least priority of appts for me, since they weren't able to help with keira, and discussing this with the ped dr. today, we will put that on the back burner for now. hope all is well for everyone:) that you are having a beautiful spring - it is lush and green here! love it:) luv us, the van g's

http://youtu.be/MXFSE-XFCMw our camera wanted to focus on other stuff...have to play with it. not very clear. somehow I didn't record keiras' solo performance' on the 3 little pigs. I am going to try get a copy from one of the mom's. above is the link for the movie on youtube

keiras recital piece - not too focused but you can hear it;)

sooo....i'm just sitting down to share a couple thoughts. my big little girl is at her first birthday party by herself. she had her first classmate birthday party in November, but moms were invited and it was a morning thing - no meals involved. now she has a party with her classmates where they picked her up from school, and she's having supper there (I dropped her own pizza off at their house this morning, and some cupcakes) and then she's being driven home. i'm not a control freak, but my little girl is growing up. for some reason, this particular event is hitting me:) and yay! in less than a week ian gets his cast off...hopefully after 4 sleeps:) time is going to fast:) hi and luv to all!

i havent posted pictures since october...sorry!!! here's a few from between now and then:)

oh...and the very first picture is one I stole off of jody's blog!!!! thank you jody:) Marcia is one of the ladies who does so much, and has done lots for me - and I never have picts of us! she's a very special lady!!! in a totally good way:) i'm hoping Heidi or jody will share the vangrootheest grandchildren pict from Christmas...it will be outdated as of oct 2014 (baby geusebreuk arrival...totally spelt that wrong...sorry to tired/lazy to think harder!!!)...but with the jagt family moving further away, who knows when we will have a NEW one??? ian is beginning week 3 of his cast - 2 more weeks!!! (he broke his leg:) as you can see, keira has lost 2 teeth...we are all doing well, hope you all are too!!!! much love

well. hello:) it has been quite a while. 10 mintues ago I was tucking ian in bed and he said, mom, im ungry. yogurt (supposed to be a question mark but somehow my keyboard is messed up) applesauce (question mark;) water he was given water. but he said it all so cute, and so clearly...he is improving:) yay!!! anyways, I have not uploaded picts for months......so I am working on that presently:) I thought I had at least done a new years post. but no, it does not appear that way. so happy new year:) love from the van grootheests