Merry Christmas everyone

Hi,

I haven't been posting any blogs lately as we have been busy with the upcoming holidays.  We wish everyone a Merry Christmas and a safe and happy holiday.

I will be up and running again after the new year.  Please give me idea's about what is concerning you so that I can keep this current and relevant for you.

Thanks,

Technology and our kids.

This topic has been everywhere lately and I thought I should address it to the of my best ability.  With the creation of the ipad and more user friendly programs and devices it is only natural that we want to have and use this technology with our kids.  Especially with our non verbal and profoundly disabled populations.   Over this last year, I have seen my own children develop into confident and silly little boys thanks to the use of a communication aid.

First off a little bit of back ground both of the boys are non verbal and prior to getting their current communication devices "Spring Boards"  they were making choices with a switch device called the "partner four" this provided visual and audio feedback to them.  We had to prove ourselves that the boys understood what they were choosing and always were followed through with their choice even if we knew they made a mistake.  It took years to progress through this system.

Since we have started with the spring boards it has allowed the boys to become people with a voice, needs and wants.  It has been a great equalizer.  They are currently, included in a kindergarden class a few times a week.  Now the teacher calls on them for answers to questions that the other kids look forward to hearing them "say" their names with the spring board.  It has allowed them to become more engaged in the classroom and to more actively participate in the classroom.  It has been great for my kids.

My concern is that many parents don't know about this technology or they give up because our kids have to jump through hoops to prove themselves.   Our children learn skills over time and with lots of repetition.  And yes sometimes they will never prefect a skill however,  it does not mean that opportunities should not be presented.  There are many different kinds of switches and joysticks that can take a little skill or movement and create communication.  I would like to see more innovation and thought when assessing a child's skill level.

I am asking all parents to familiarize yourself with products such as an ipad, laptop, spring boards and switches.  Ask questions and engage therapists in the assessment process.

Spica Cast follow up

It was a happy day yesterday we finally got the spica cast off after 10 weeks.  The femur is 90% healed.  However, this being said.  S. is not favouring that leg.  He is holding it a weird angle and seems to be in pain and has some muscle spasms.  A call has been put into the physiotherapist and their pediatrician.  I am hoping that it is not his hip and if it is muscle spasms that it can be fixed with Botox.  

Has anyone else had any experience with this?   Any advice would be appreciated.   

The joys of a spica cast :(

It's taken almost 11 years to learn about this necessary cast and I hope that I have learned my lesson well.  I was never taught or even thought of asking about brittle bones.  Especially in none weight bearing children.  All of these years I have focused on the hips.  Watching and being careful not to cause a dislocation.  No one mentioned the risks of all the other possible broken bones.  So when S. showed signs of something wrong we just assumed it was a hip problem.  The emergency doctor x-rayed his leg around the hip but not quite low enough to discover a broken femur.   So we walked away with the diagnosis of perhaps a pulled muscle and given Motrin to help with the pain and watch his positioning.  Well S,  kept showing discomfort and his leg was held at a weird angle.   So when the swelling started I went right away to the pediatrician where we discovered his broken femur.  So began my lesson on bone growth plates, bone health and casts.

We have had this awful looking thing on for almost 10 weeks.  S.  is completely bored and upset with me.  I told 2 weeks ago that the cast would come off and he was pretty excited to get back to normal we all were.  However, the darn femur was not completely healed so we had another cast put on.  Needless to say S. was upset with me and being non verbal he had to tell me somehow so he started biting me.  Well that lasted a few days and he was getting used to still being casted.

I am surprised at how well he has been over the last few weeks.  He has bruises on his other leg from kicking the cast.  He is always sitting somewhere although we move his often.  He has had pee and resource down that cast and has been dried by a hair dryer too often to mention.  However, he is still happy go lucky.  Well he is to get this cast off in two days.  I am afraid to tell him just in case he has to keep it on.  Please keep your fingers and toes crossed that we get this darn thing off in two days and can go back to normal.

Now, I am going to check his calcium and magnesium and vitamin D levels with our nutritionist.  I will also make sure that there is more weight bearing.  I am telling you this story that so that you can also do the same and learn from my lesson.  If you have a non weight bearing child please continue to keep up on their bone health.  Don't just focus on those hips.



I am also wondering if there is any other wisdom that other parents can share.  About cast care and brittle bones.  Or just vent about what is bothering you today.

Hope to engage families in the local area

Hi all,

 I am hoping to engage families from our local treatment centre.  However, this being said.  I  would love to hear from everyone who has a special needs child that would like to share your thoughts and experiences.  I am open to ideas and thoughts as to how you would like this site to look.  I was thinking of posting blogs and having other people share and contribute as you see fit.  Also, if there is a topic of interest or something you are not sure of.  I will try to get that answer for you.  

Introduction

My name is Paula, I am the mother of twin boys with Spastic Quadriplegic Cerebral Palsy.  They are both G-tube fed, non-verbal, labelled as Deaf blind and they also have a seizure disorder.  They are the love of my life.  

We have attended the Sudbury Regional Hospital’s Children’s Treatment Centre since we were discharged from the hospital when they were about 4 months old.  We receive Physiotherapy, Occupational Therapy, Speech,  Botox, and Augmentative Communication Services.  

I would love to hear about your children and the services you receive at our local Children's Treatment Center.