Tag Archives: care

World Rare Disease Day 2015

CARE ABOUT RARE

Ever wished you could do something to show you care about rare?  To spread awareness and provide opportunities for education?  Today is that day!  And it’s ridiculously easy!

Wear BLUE JEANS!  When someone tells you how hot you look – tell them why you’re wearing them.
Because you know someone living with a rare disease.

When someone else is wearing blue jeans, ask them if they care about rare?
If they don’t know what you’re talking about – let them know that just by wearing jeans on February 28th, they too can spread awareness.

Whether you know someone affected by a rare disease or know someone through a grapevine of connections or read an interesting blog on an individual – it’s all the same.
It’s about spreading the word.
We all have blue jeans.
We all wear them.
So why not promote a great cause at the same time?

BLUE JEANS FOR RARE GENES!

I love to see the pictures of everyone celebrating today – please find me on Instagram @k_haller and tag me or on FB!

I appreciate everyone’s support in showing the world just how beautiful rare is!

Advertisements

Concerns regarding FSCD funding process – a letter to MLA’s in the disability sector

Good morning!

I am writing you this morning as I am extremely frustrated by the approval and decision making process regarding services requested for my son.  We, as a family, absolutely do not ask for anything more than we need or our son requires and ensure that we do not abuse the system put in place to support children like ours but we have come to a standstill with our contract with Family Supports for Disabilities.

Our son Benjamin has a rare neurological disorder called Ponto Cerebellar Hypoplasia Type 3; I’ll spare you the details as I’m sure you will just Google it if you’re interested but what it has meant for us and more importantly him, are countless nights of not sleeping.  I’m not exaggerating when I state that our child does not ever sleep in a pattern or that he is up for hours at time each night.  In addition to that, he is supplemented food through a gastrointestinal tube which puts him at risk for aspiration and choking due to reflux and sensory issues.  For the past five years, my husband and I have tagged off and on to support Ben at night, taking turns sleeping the couch, watching Elmo with him for hours at a time or simply just playing with him but it’s come to a point where we are feeling burnt out.  I feel we have made a good run at trying to do it ourselves.  But the worst part of our exhaustion is how it relays to Ben; he definitely can feel the frustration when he’s been up  since one in the morning and we’re tired.  We try our best to be patient and accommodate him but for lack of better word – we’re pooped.  This is not a normal circumstance. We want to be the best parents for him, provide him the best quality of life and to ensure that he’s happy and to do that, we’ve applied for over night respite assistance and have even registered and qualified for the service from Nurse Next Door (a private company) to watch Ben through the week 10p.m. – 6 a.m.

However – FSCD will not approve the funding needed which I do not understand.  How is my child not considered as valuable as they funding requested?

I understand that FSCD may look into using the Supports Intensity Scale for future assessments and when that happens, Ben will without a doubt receive the financial supports he requires based on his medical and behavioral assessment alone but until then, I don’t believe that asking for overnight respite for him is much to ask; it will allow us to be our best for him during the day when we can engage him in his community, include him in social activities and allow him to have fuller days.  How is that not worth what we’re asking for?
Please point me in the right direction…. a direction that allows us to provide nothing less than the best support possible for our son.

Thank you for your time and consideration.

Regards,

Kristi Hall-Busque

Time to change my speech up a bit

Whenever Francois and I have a discussion about Ben and his sleep patterns, we are always asked how we manage.  Our answer is the same and something a long the lines of “It’s been six years of not sleeping, you get used to it.”  I think that speech is has become a little less convincing.

We are used to it but our bodies are not as well adjusted as they were even a year ago let alone six years ago when Ben was a baby.  Our bodies are tired, our patience well worn and my eyes are suffering in the form of big black bags I cannot get rid of.  We used to tag each other out but now, we take turns sleeping on the couch with Ben so the other can sleep.  Three all nighter’s in a row used to be a rare occurrence and now it’s become the norm.  Ben has fallen asleep at nine and then up by one every night since Wednesday.  The past three nights, not going back to sleep at all.  It’s beginning to take its toll.

We base many of “tomorrow’s decisions” on his night because it directly influences our night and even though we try to be considerate of each other, it’s hard not to want to punch your spouse in the face while they’re snoring away and you haven’t yet been to sleep.  We started with two nights respite in October and I think it’s time to up the anti (already have the doctor pushing for it anyway); maybe we’ll get some sleep in the new year?

Follow Up from Ben’s Surgery

Nothing is ever easy in the life of a child with a disability.  Complications turn into further challenges and their health is so easily affected, it’s frightening.

Ben was crying.  He cried for six hours straight without comfort or rest.  Nothing worked to stop him.  Finally at four in the morning, I decided to take him to the Stollery Pediatric Emergency.

The doctor checked him out; mom and I insisted that it had to be something with his casting and surgery.  He asked what had happened last time we brought Ben in and it turned out to be nothing.  Really?  I have never brought my child into the emergency center without being absolutely sure something beyond our parental control was wrong.

He took X-rays.  He found a pin in Ben’s foot which we were unaware was there but later found out it was procedure with his surgery to help keep his muscles extended.

I insisted that he take off Ben’s cast.  With little hesitation, he removed it and found Ben’s incision from the surgery and heel where the pin had been set infected.  It was the saddest moment of my life.  My son was clearly in so much pain and there was nothing we could do for him; we were frustrated with his endless crying.  He was in pain.  We didn’t know.

Once Francois joined me, we decided (unanimously and without discussing it even) to have the pin removed from his foot regardless of how it effected his surgery results.

Ben was put on IV antibiotics for a week and then moved to oral for another ten days.  Home care has been coming out to help change the dressing with the wound.  The podiatry clinic wanted to do his follow-up for the infection but I told them that his pediatrician would be responsible for his health concerns and that they could follow-up regarding the muscle/surgery process only.

For the first time since Ben’s birth, I felt as though a process wasn’t followed.  Ben’s overall health was not considered.  Timelines were too long for someone as fragile as Ben.  My trust in the podiatry team is fractured.

We are not a family who often blames or points fingers; we understand that there are greater risks in all health matters when it comes to persons with disabilities but something was missed along the way.  It’s frustrating as a parent as we expect doctors to be thorough and be consistent in their treatment.  Benjamin fell through the cracks on this one.

It will not happen again.

~Ben is doing much much better now though.  Weekly visits to Dr. McGonigle/Chatur and a better care plan.