Tag Archives: sick

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

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Two years old and she knows…

Ben has not been feeling well lately and though is on what could be a permanent anti-biotic for his constant ear infections, guess what… he has a massive ear infection.  My poor boy just wants to curl up on his mom (or Nana when there) and spit, drool or flick his mouth (which is how he self stims/relaxes).  Last night, we’re curled on the couch with Poppy watching a Curious George Christmas special and she turns to me, asking if Ben is sick.  I told her yes, which is why he’s so quiet and curled onto Mommy.  She then tells me Ben is her big brother but that she is bigger than him.  Yes, that’s true Poppy.  A few minutes pass and she tells me that Ben is different – he’s not a baby but he’s small like a baby.  All her words and again, true.  “Mommy, Ben is our special boy.”  Yes, even more true.  Then she curls up along his back and plays with his hair and tells him she loves him.

 

She adores him, is his best friend, little sister and protector…

She’s two years old and she knows.

Purposely Exlcuding My Son

This past Saturday, we loaded the babes up in the van and headed to Francois’ parents for the afternoon.  We also planned a play date with the twins and were excited to see how the babies played in the pool together.

BUT…

We left Ben behind. 

And on the way to the pool (which is only a five minute drive) I bawled and felt sick to my stomach, so bothered by the fact that he would not be joining us on this cousin play date.  I felt horrible because Ben loves to swim.  He loves to splash, lay his head in the water and listen to the sounds of the bathtub or pool, loves to kick, laugh and watch other kids swimming around him.

We’ve left him behind before, taking Avery and Poppy swimming for a “girls date” with the parents and leaving Ben with a set of grandparents.  (Don’t get me wrong – I know and truly believe wholeheartedly that Ben gets just as much out of one to one time with all of his grandparents and loves when he gets their full, undivided attention) but somehow the idea of him missing out on play date with with Callie and Swenton, felt much worse than him missing out on swimming with his siblings.  To others it may seem like the same opportunity but to me, as his parent, it felt and continues to feel separate.

Over the past few days I’ve tried to decipher my own emotions around it and ultimately decide on why exactly it has been eating at me this much and I think I’ve narrowed it down to choice.  Like with so many other things in his life, Ben does not have a choice when it comes to swimming as unfortunately there is a best and worst case scenario in this department.  We have learned that from experience, swimming does not jive well with Ben’s health.  No matter whether it’s winter or summer, freezing out or hot as heck, Ben will get sick afterward.  He cannot be submerged in water for long periods of time.  It’s inevitable.  We have tried wet suits and water shirts, toweling him off quickly and completely when getting out of the pool, wearing a toque and sweat clothes, turning the heat up in the car, scouting out heated pools… it does not make a difference, Ben still manages to get sick.  Every. Single. Time.  And not just a little cold with a running nose sick but entire body shut down mode, will not take foods orally, double ear infection kind of sick.

It isn’t justifiable to his health and over all well being to take him swimming.  We have to consider the bigger picture.

While he loves to swim and has shown us in many different ways that he does (verbal, physical, emotional) the outcome is predetermined.  I don’t even feel the sense or urge to argue against it anymore but it does make my heart hurt and my eyes tear up.  Over time, I’m sure I will become just as desensitized to this as I have with everything else he “can’t do” or “can’t participate” in because of whatever reason at time but it still sucks.  There is no other word for it.

I will however remain hopeful that one day, his health will improve so much that we can try again.  And we will continue to provide as many opportunities as we can (beach days, splash parks, water tables, sprinklers).

In the oh-so-famous words of one of my nine year old’s favorite singers – “Never say never”

The Sickness Cycle

Ben, like many children facing similar challenges, has a sickness cycle.  He’s healthy for a month or two, then sick for a month.  Then healthy, then sick.

In February, we had our first unplanned Stollery stay and ended up there for a week.  Benjamin wasn’t tolerating feeds – orally nor bolus feeds and it quickly became a scary situation.  As everyone associated with him knows, weight loss/gain is our biggest obstacle and ensuring that he remains healthy within such great limitations is something we face daily.  I made an appointment with Dr. Chatur to get him checked and knew that the chances of being admitted were about a million percent (yes, that exists.  You can be that sure something is wrong with your child that is not fixable within your own means at home); I brought packed bag for the both of us.  By that afternoon, we were nestled into an emergency room bed.. then a few hours into the trach room (adorable little ones pulling out their tracheotomy tubes!) and then into our isolation room.  It was determined that Benjamin had caught some sort of viral thing and would need to be isolated to make certain he didn’t infect others.

The main concern while there was his hydration levels and for six days straight, he received a saline line into his foot – we’ve never seen him so puffy before!  We continually tried adding formula to his feeds but it took him up until day four to begin tolerating them and even then, at a slow slow slow pace.  Finally, an entire week later we were able to leave the hospital even though Bug still wasn’t quite back to normal.  Still, a few weeks later he was showing signs of a new virus and sure enough, he caught Bronchiolitis (infection in the lower lung).  We ended back at the Stollery on a Saturday night but fortunately the doctors did some testing and sent us home with the same plan we left with last time.  BUT with the exception of us having to follow up with Dr. McGonigle/Dr. Chatur during the week.

By far, those few weeks have been the most trying for us a family.  It’s a difficult situation to live in daily, unsure of exactly how Benjamin is being effected by these constant colds and need for medication.  We know he has troubles identifying pain so everything remains a guessing game.  Most children, when they get sick will “sleep it off” for a few days.  When Ben starts sleeping too much in a day, that’s a clear sign that we need to take him in.  He rarely holds a fever for than a few hours at a time because his body doesn’t regulate itself so even though the thermometer may not indicate it, he could be feeling awful.

Since the stay though, we have discovered one new, amazing trick.  In hopes of keeping him hydrated under any circumstance, we were only giving him water at night instead of his formula.  The water seems to be benefiting him in more than just that way – it’s created an increase hunger during the day and he’s now taking up to three bottles a day instead of fighting to get him through one.  Huh!  Who would have thought!

The above being said, we are extremely grateful for our family, friends, doctors and nurses who managed to keep us sane that week. You are all incredibly lovely and so much appreciated.