Tag Archives: disability

Mama Jinxed It

For the record, until this December I have never said something out loud in regards to Benjamin’s health that could “jinx” it.  I refuse to even celebrate his birthday early; if it falls mid-week, his party is the weekend after.  One year, his mylar balloons got loose… one flew away but the number 4 got stuck in the tree and Uncle Jimmy climbed up it for me because I was so freaked out by it.  

But I jinxed it this time… Mom and I looked back a couple of weeks but couldn’t find a Facebook post about it so I must have said it out loud that Ben managed to go all of 2016 without going to The Stollery Emergency Room but on Boxing Day, guess where we were!

A four day temperature is cause to bring him in to see Dr. McGonigle and when the office is closed, the emergency room we go!

They checked his ears and lungs and gtube site but nothing.  It was a resident (very kind one!) and a doctor I had never met before.  As they were leaving after checking him out, they gave each other the looks of “what should we do?” And “I have no idea” and told my mom and I that they were thinking about running some x-rays on his gtube in case it was dislodged or his lungs just to “make sure.”  While they were very nice about it, I had a sense that they were playing a guessing game and while being helpful, had no idea where to go with Ben’s care.  

After they left the room, I looked at my mom and she shrugged so I went out to the desk; I asked the doctors if they felt my son’s condition was an emergency or if he would need to be admitted to which they replied “no”.  I told them that I would much rather take him home them and call his regular pediatricians office tomorrow and come in a second time, then to have them run tests unnncessarily.  I also told him that I was faily certain Ben’s tube is fine on the inside; I assured him that we would bring Ben back in if his condition worsened and that we had 24hr care in place.

And the truth is, If Dr. McGonigle or Dr. Chatur want us to run a hundred tests and were just guessing, I would do so without question!!

 But they know my son and I know them.  

The resident stated that he understood (again, very nice about it!) and asked me to give him a few minutes.

Then I closed our room door and burst into tears.  Overwhelmed.  It’s so hard to make decisions about your child like that, especially when they are already so fragile.  My poor baby is sick and all I wanted was to make him feel better, not worse.

I called my husband to make sure he was alright with my call…  that he was okay if we left the hospital and head back in tomorrow to see our regular doctors but mid-conversation, the resident returned and told me that our doctor was actually in the hospital and that they had paged him for us.  

Dr. McGonigle came a while later and checked Ben out.  I explained what was going on and that Ben had not been his usual happy, easy going, playful self and that he had been lethargic and unwilling to eat.  He asked how long the fever had been running; I told him four days and that’s why we came in to which he replied “that’s right then.!” (Relief on this mama’s part to hear your doctor acknowledge that you should have brought him into emerge.  I always feel bad if we’re taking up space unnecessarily.)

He told us that Ben has a viral infection and will need to run its course.  Hydration and Tylenol/Advil.  That’s it.  No testing necessary.  He also checked out his gtube site and asked that I bring him in next week to have his site “fixed” and for a follow up.  

And then I hugged him and kissed his cheek because there is no one in the world like him.  And I would say the same about Dr. Chatur.  We are so lucky and fortunate and grateful to be under their care.  Even Ben cracked a little smile when Dr. McGonigle came over.  Those doctors are a part of our extended family.

My Ben is still down today but did play in his jumperoo for an hour, watching PJ Masks (his new favourite!) and that is a bright sign of better things to come.

And a reminder to never say things out loud before they actually happen (or so they don’t!). Xo

Advertisements

A Defensive Parent

As we’re sitting in Kindergarten Information Night and the teacher is talking the group through what to expect over the year for our children, special needs children comes up in the conversation.

A parent, near the back of the room asks “special needs kids in the classroom?  what do you think about that?”  The teacher looked surprised at the question (instantly winning points with me) and answers something along the lines of “it’s fine” and “a past child with Cerebral Palsy did quite well” BUT my defenses were already up.

First of all…. children with disabilities are not “special needs kids” – they are kids that require extra support and attention; all our kids are special and their needs are unique to them.  I prefer “Child/Parent Led Education” or “Inclusive Education”.  I understand that the term special needs is widely used and accepted but when it comes to education, I feel like it immediately isolates children into categories.

What does get my defenses up is the tone of which the question was asked “about that?”  

ABOUT WHAT?  About a child with equal entitlement to an education?  To a child capable of achieving goals and meeting challenges in their own way (no different than any other typical kid)?  About an inclusive community and educational system?  Inclusion benefits everyone, especially at the Kindergarten age.  It provides the opportunity to learn about acceptance, and kindness, and understanding differences.

I wanted to shout it out and inform each parent there what the benefits of an inclusive classroom can provide but…… my husband put his arm out.  Stopped me from finding out exactly which mom asked the question in that tone and suggested that maybe she didn’t mean it the way it came out.  She did mean it that way but I understood what he was saying.  I don’t have to pick every battle.  I didn’t need to fight this battle, especially considering we were there for Poppy, not Ben.

The thing is… parents of children with disabilities have to fight for everything.  It becomes instinct and second nature and speeches no longer need to be prepared because you have your advocacy points memorized.  I feel like a huge part of my job as Ben’s parent is to educate and be the voice that he doesn’t have; I say this all the time but not everyone is going to want to hear what I have to say and I have to consider place and time.

So while I kept my mouth shut this time (but admittedly, had to excuse myself from the room to take deep breath), rest assured that come September, I will find a way for Poppy and I to show her classmates how important inclusion is and what it means for her to have a big brother with “special needs”.

 

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!

A long time between…

I think the timeline between posts on this blog are so distant because Ben is doing so well.  I’m afraid to say it out loud as it tends to jinx his progress.

Two weeks ago, Francois and I (somewhat simultaneously) decided that it was time that Ben have his own room again.  He hasn’t had his own space since he was an infant as from birth until the moment we got overnight funding, he slept in our room.   And often on my chest or in my arms on the couch.  Now that we have two lovely nurses that accommodate his sleeping pattern (also known as “without a sleeping pattern”) – it’s time to give him that space back.

Practically overnight, we cleared out our extra room that we had been using for storage, swapped beds with Avery so we could use her day bed in his room, purchased furniture, decorations and voila! After placing his personalized “B” from his Ma Tante Chantal outside his room door, Ben had a bedroom.  He had.. HAS a space of his own.

Overwhelming but exciting!  Best part – he laughs when we take him down there now; like he knows it’s his.  I could cry just thinking about it.  Such a milestone moment for our family!

Ben's New Room 10440978_10154188519885697_5477989707695855068_n

Catching Up

It’s been a while since I’ve posted – almost four months which in the life of a Bug is eternity.  In the case of my Bug, not so much but still much as happened.

  • Ben qualified for Nurse Next Door and has been doing really well.  He now gets to sleep within his own patterns and lives without two frustrated parents wishing him back to sleep.  He has two lovely night nurses who cross their fingers that he sleeps through the night but if he doesn’t, happily play, feed or settle him.  When Ben falls asleep at 6:00 p.m. we no longer panic to keep him awake in fear of sleepless nights and instead he gets to sleep when he needs it.  
  • My mom became Ben’s official Development Specialist with GRIT.  After lots of list making, pros and cons considering and thought sharing, we decided to keep Ben in GRIT as we feel his specialists have great ideas and suggestions for Ben’s development.  We decided that school was (or is for the time being) not the best environment for him, that restricting his programming to three crammed hours was actually hindering his development and some other things that don’t need to be publicly shared were not in Ben’s best interest.  Since changing the way he is presented opportunities – time of day, interaction, and really following Ben’s lead he has progressed tremendously.  He has demonstrated an increased interested in his standing frame, started reaching and removing things from buckets – moving them into new places and even testing out food again.  (thanks Mom!)
  • He has gained weight.  His doctor actually stated that he didn’t need to weigh him last appointment because he was looking round.  Yah right!  But the sentiment is nice!
  • He has increased his daily intake by almost a full 8oz (a bottle!).  I actually had to call Home Nutrition and ask for an increase in formula!
  • He is starting to move his arm as if to wave when you say good bye.
  • AND his vocabulary/sound making has become much more expressive.   
  • Lastly, we purchased a new piece of equipment that we received on Thursday – the GoTo Seat from FireFly and Ben appears to really enjoy sitting in it.  We’ll see if there’s a “honey moon period” with it but so far, so good.

    I think that’s it… for now!

    xoxo

Image

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?

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.

Another thing to add to the list…

Last week, Ben was put into his standing frame in his AFO’s like always and lasted about thirty minutes before he had had enough.  When he was removed from his stand, the muscles in his ankle and calf on his right foot started spasming and continued to do so for about an hour and a half.  Scary stuff.

This morning we met with our Physical Medicine doctor, Dr. Watt (who is very cool!) and he informed us that this type of spasm is actually called Clonus.

Clonus as defined by Wikipedia is:  a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyper-excitability). Unlike small, spontaneous twitches known as fasciculations (usually caused by lower motor neuron pathology), Clonus causes large motions that are usually initiated by a reflex. Studies have shown Clonus beat frequency to range from 3–8 Hz on average, and may last a few seconds to several minutes depending on the patient’s condition.

 

Sounds fun right?  Hardly. 

I am definitely starting to get the hang of this diagnosis stuff; I predicted that it was a neurological thing.  And in that of course means we now have to schedule a follow up appointment with Ben’s neurologist. 

It’s definitely that time of year – November through February is appointment time.