Saturday, November 30, 2013

Nope. Not going to happen

The amazing story I had hoped to tell you with unlimited pictures illustrating our immense joy?

Ya that's not going to happen.  At least right now or with this situation.

God has a cruel sense of humour with me and I don't mind saying I don't appreciate it.  Not one bit.

Thursday, November 28, 2013


It's cray cray around here folks!  Cray. Cray.  Ok so it's just me that is crazy.  There are events that have been happening in the last eight days that are just too unbelievable.  It's all good.  It's all amazing.  Amazing maybe until it might not be.  Then there will be devastation.  My heart will be broken, my spirit crushed.

For now I am living in hope.

If I am really really lucky there will be a magnificent update to post with a story that will astound you.
(if I'm not so lucky a cruel joke is being played on me by the universe...)

Hope though right?  Living in hope.....

Monday, November 18, 2013

Check your boobs people.  Check. Your. Boobs

Thursday, November 14, 2013

Rambling Rant

I need to find a way to get my hands on groups of medical residents both junior and senior alike and perhaps the Fellows too and provide for them the education I need them to have.

Our children's hospital is a training hospital so like it or not your appointment can be determined by the skill, competence and confidence of the resident assigned to the doctor you are really there to see.  The resident comes in first does his assessment then must go back and report to his supervisor who it is you really want to see. They discuss possible treatment plans THEN the RD (real doctor…oh don't you residents get your panties in a bunch…I know you are doctors, just not the fully accredited one I want), comes in repeats the exam or parts thereof and states the plan.

As useful as this is to the resident and probably the attending too, it can add a lot of time to a short appointment.  What it can also add is a lot of frustration for the patient and family alike.

It is highly possible that I am old enough in the tooth that I have lost patience with the system.  That would make sense however what I have learned about myself as I have aged is that I have more patience for things that will result in the greater good.  So wherein then does the problem lie?

I believe the answer to the question is two part.

1.  I think the phrase is "I do not suffer fools gladly".  I appreciate the learning curve students are on.  I appreciate the difficult nature and volume of information that must be absorbed and respect those whose brains are big enough to take on the task.  Mine is not.  I am also mindful of the gruelling schedule they are forced to live.  All that being said GET YOUR ACT TOGETHER!  Come in prepared.  If I have to fill out five pages of information prior to the appointment I'm going to assume it is because someone at sometime thought the age at which my sixteen year old learned to drink from a cup was important!  Read it.  Skim it even.  This will then help you approach the patient and family members in such a way that your assessment will be accurate thereby your diagnosis and treatment plan will follow suit.

2.  It is possible that because there was a resident who either was exhausted or scoring at the bottom half of her class at the helm the day Ailish died that it might subconsciously be playing a roll in my attitude in the last few years.  I think it has made me want to skip the middle man and go straight to the top.  I don't want to have to work my way to the top anymore.  I have put in my time.  Paid my dues.  My daughter paid with her life.  I'm sure that sounds all so dramatic.  The fact was that Ailish probably still would have died if the resident had been brighter, the nursing staff being able to distinguish sleeping from coma and me using the big mouth I have for better advocating rather than sarcasm.  The fact remains a resident was assessing during the day and not knowing she needed to be calling in the RD (see above).  You would think that because there was the orthopaedic resident who was amazing and fought so hard to save Ailish's life once he was called in late in the game that it would cancel any negative attitudes I currently have.  Sadly that might require maturity and perhaps letting go of deep seated anger and guilt harboured in my soul….

Coma NOT sleeping
The real answer is likely somewhere in the middle but mainly lies with me being old and crotchety.  I actually do relish the training of new physicians especially when it comes to my children who's disabilities fall in the severe to profound range.  I want them to see my kids, learn about their diagnoses and see them for the individuals they are and not what the literature says they should be.  I want them to learn the compassion and patience it takes to examine them and the social and communication skills it takes to work with the parents.   They are going to be practicing medicine long after I am dead and gone and it would be great if we as a family had a hand in them being able to sat
had seen a child with such and such and they presented like this….

I really do want to be part of their education.  They just need to quit p@#$% me off!

Tuesday, November 12, 2013

Would you believe that come January this family of 12 the majority with significant special needs will have neither family doctor nor paediatrician? I think that there is a per that will be taking the kids on but my big kids and I will have no one. The nurse called me today telling me the other patients are getting letters but she thought she would call and give me the heads up as she said we as a family are going to have a hard time finding a doctor….
Darn you people and the need for self fulfillment, self preservation and creating your own destinies!

Sunday, November 3, 2013

If you are pregnant....

If you are pregnant and think to yourself one drink won't to me.

If you are pregnant and think to yourself that your friend drank a few drinks all through her pregnancy and her baby came out to me.

If you are pregnant and think to yourself you read in an old article that said one drink in the evening would help you relax and won't hurt the to me

If you are pregnant and think to yourself that in your grandmother's time woman drank AND smoked during their pregnancies and their kids all came out to me.

If you are pregnant and watch the show "I Didn't Know I was Pregnant" and all those women drank, smoked and no prenatal care at all and you think to yourself all those babies were born to me

If you are pregnant and think there is no way you can go a whole forty weeks without an alcoholic to your to me.

No matter what anyone tells you or what old literature you can dig up NO amount of alcohol is safe during pregnancy.

NO amount of alcohol is worth the risk to your baby.

Babies prenatally exposed to alcohol may indeed appear to be born unscathed even with extreme exposure.  This does not negate the fact that their brains have been dramatically impacted.  Cognitively the kids, if they are lucky might do well, unlikely but it is possible but then behaviourally not so much.    Mental health issues have a high tendency to make themselves known in adolescence.  There is a cornucopia of diagnoses that are associated with prenatal exposure to alcohol many of which might not be apparent at birth or even during the preschool years.

NO amount of alcohol is worth risking a lifetime of limitations, challenges and heartache.

Parenting begins as soon as the pregnancy is discovered.  The choices that are made can determine the child's future.  If you wouldn't give the baby a bottle of beer or a cocktail once born then don't do it before birth.

Talk to me.....

People First

People first language.

I know, I know it sounds like another politically correct way of speaking that a special interest group wants the world to buy into.  Guess what?  IT IS!!!

Sensitivity is so important in communication.  It happens to be in my opinion one of the great assurances your message will be heard and not have your listener preoccupied with what an ass you are instead.  It encourages the start of open dialogue and the development perhaps of new relationships.

As parents or immediate family members of people with disabilities we might not be so delicate about the special needs that we live with daily and in fact might be somewhat crass.   If outsiders looking in could hear some of the conversations they might find them on the offensive side.  The key there is that they are on the outside.  We in the trenches have the inside tract.... Any seemingly off colour remarks are inside jokes if you will and always come from a place of love and respect though our word choices might belie that.  Call it a stress relief.  Call it an ability to laugh in the face of adversity.  Call it whatever you want however unless you are on the inside don't follow suit.

You might wonder what has brought on my little diatribe.  It might just be as simple as having heard one too many times the referencing of children and adults by the disability handed them.  Teachers, therapists, doctors, front line care givers identifying their charges in sentences such as "I have four Downs, five autistics, an FAS" etc etc.   No No NO!

Children/people are not their diagnosis.  People first language means when you are speaking of someone you might describe a child WITH autism not an autistic, you would say a child WITH Down Syndrome etc.  This might seem small.  It might seem petty.  When it is your child or family member I assure you it is not.  My biggest pet peeve however is when staff working with those in wheelchairs refer to the person as a "chair"ie we have to get the chairs in the bus or in the room etc.  NO!  The person is in a wheelchair they are NOT a chair.  This is said time and time again.  How demoralizing.  How degrading.

Maybe a good way to describe people first language is to take the "special interest" aspect out of the equation and illustrate with your average variety crowd.  Next time you introduce your friends you might say "this is my bald friend Barry, obese sister Tara, and homeless uncle Stan".  The friend, sister and uncle are people who HAPPEN to be obese, bald and homeless.  It is not who they are as people.

This really is more than being politically correct.  This is not a means by which if we use the right words then maybe the disability will not be noticed.   This is a way of hopefully creating a society whereby those with disabilities are less marginalized based on having a diagnosis.  The goal would be for them to be seen as PEOPLE FIRST.