Back to the hospital… and a new asthma medication

We were curious how far into the fall season we would make it before our first cold… well, now we know!  It’s not surprising, of course.  Between preschool, playgroup, motoring munchkins and music group… we’ve been fulling enjoying being 31/2 years old :).

So, we spent the day in the ER.  Boy is it busy on a Saturday afternoon!  After waiting about an hour for a room (and we were triaged first priority) we started the asthma protocol.  Henry’s wasn’t doing that bad this time as he’s already had 9 puffs of Ventolin at home, and we took him at the first sign of difficult breathing.  He had one dose of Dexamethasone and then we waited to see if that was enough.  The ER doctor was hoping we wouldn’t need more Ventolin and Atrovent, but in the end we did.  But only one round each (5 puffs Ventolin and 3 puffs Atrovent) and then he was stable enough to come home.

Nice!

We are also starting a new medication – Advair – which replaces his Flovent.  From my understanding Advair is one step “up” from Flovent because it is a little stronger and contains two active ingredients: salmeterol and fluticasone.  These work to keep the air passages of the lungs open by relaxing the muscles and by reducing inflammation, swelling and irritation.  It is steroid medication, which makes me a bit nervous… but it seems to the best option to control Henry’s breathing.   Advair is a long term medication designed to help prevent asthma symptoms; it is not a rescue medication for it he is already having symptoms.  Dr Seear, our Respirologist, recommended trying Advair as Henry has been repeatedly admitted due to his asthma.

This year we are also going to try taking the Advair on a more regular basis.  While last year we only started the Ventolin once Henry was already having trouble breathing, this year we are going to use the Advair continuously over the winter.  We have two choices, and haven’t decided which one we’ll try first.  Either he takes one puff daily all winter.  Or he takes two puffs daily at the first sign of a cold.  We were leaning towards the second option as we thought it would involve less medication overall… but if he is continually sick it may not work out that way.  So we’ll see how it goes.

In the end… we know he’s going to get sick and we’re going to keep having fun anyways! We don’t believe in living in a bubble… so if the consequences of having fun are colds and a few trips to the doctor – then so be it :).

 

Cheers, Shelley

 

 

Making a homemade blended diet… on the fly (with baby food!)

Arg… our fridge stopped working!  Upon reflection, it stopped working 2 days earlier, as Shawn had commented that the milk seemed a bit warm.  But I didn’t notice it until Thursday morning when I took the eggs out for breakfast.  Warm… very warm eggs.  Not good…

Because I didn’t notice in time, I ended up having to throw out most of what was in there… including the 3 batches of Henry’s food I’d just made the night before.  Arg…

So… what do you do with two hungry kids and no food???

Thank goodness for the emergency stash of baby food!

 

Thankfully anytime the hand blender is involved, Henry thinks it’s fun!

I always have a few jars of baby food stashed at the back of the cupboard, just in case.  I never quite knew what the “just in case” would be… but now I do!

If using baby food for a homemade blended diet for a g-tube, the “first steps” or “first foods” type works best.  It is smoother and typically doesn’t need to be blended.  Great if the power goes out!  In this case, I had a few jars of the “first steps” type and a some of the “second stages”.  The second stages were thicker and chunkier so needed to be blended smooth enough to go through Henry’s tube.

I combined the baby food with some rice milk (I always have a few of the non-refrigerated tetra-packs around), then added in some molasses and oil to boost the calories. If I was doing this longer term, I would have also added in some tomato pasta.

It certainly wasn’t the well balanced diet he typically has, nor as calorie dense… but sometimes you just have to make the best with what you have!

I always try to keep a few containers of food frozen for Henry too, and we used this up until I had the chance to blend another batch.  The refrigerator repair person came Thursday evening, and thankfully we are back up and running again.

Cheers, Shelley

Funding cuts affect Henry

Ever since we entered the medical system, I’ve gotten used to advocating on Henry’s behalf.  It’s a “must-do” when your child needs extra support.  But it really sucks when there just isn’t enough money to go around.  I know money doesn’t grow on trees, but sometimes it would sure be nice to have an unlimited supply!

So when I heard about some reduction in services that might affect Henry, I wanted to learn more.  While I have talked with a number of people about this… please know that this is all second- or even third-hand information.  But it’s the best I’ve been able to do to learn more.

 

Henry receives a lot of his support from the BC Centre for Ability – (CFA) including physiotherapy, occupational therapy, and speech & language therapy (although we were recently discharged!), along with funding through the Supported Child Development Program.  And they offer so much more… all depending on what the family needs.  We are so fortunate to be connected with the Centre, and they have played a massive role in our lives over the past 3 years.

So… when I started hearing tidbits of information that the Centre was struggling, laying off support staff, reducing services, reevaluating funding contracts… it goes without saying we were concerned.  From my understanding, the Centre is supported financially through government funding and private donations.  The Centre for Ability Foundation is a registered charity that raises funds for the Centre’s various programs.

From what I have learned, the recent staffing reductions and other cost-saving measures are due to a change in government funding.  Our current provincial government negotiated contracts earlier this year.  However after that last election, the government no longer honoured those contracts.   As a result, the Centre planned operations based on a certain financial status, and now has to make changes due to the shortfall.  Again, this is just what I have learned so far.

 

So… what might these mean for Henry:

• less frequent support visits from our physiotherapist and occupational theraptist
• a change to some group visits held at the Centre’s offices, instead of private visits in our home
• longer wait times for current services and any we might be wait-listed for in the future
• more onerous, and more frequent, reviews for funding through the Supported Child Development program, which provides additional support at Henry’s preschool
• Less support visits to the preschool
• Less selection for therapy toys for both support people and in the lending library.  Toys that are broken not being replaced.

 

For us… these possible changes are all “doable”.  We’re okay, and will adjust.  Packing up the family and shlepping to the CFA  offices is certainly less convenient, and much harder with two kids, but we’ll manage.

But I think back 3 years… and this would have had a major impact on our lives.  It would have been the difference between getting the support we so desperately needed, and possibly giving up and staying home.  By the time we fed Henry (30-60 minutes), waited to see if he would throw up (30 minutes at least), cleaned everything up… we only had about 1.5 hours before we started again.  Plus I was still pumping everytime so Henry could have expressed breastmilk.   And we just weren’t comfortable feeding him outside our home.  It wasn’t that we couldn’t do it… but we were still learning everything and it just seemed more complicated than it was worth.  To have to try to do that every week, possibly more than once per week, in order to attend therapy… well frankly, we just wouldn’t have done it.  At least not as often.

We were lucky.. in the beginning we got to see our therapists about every 2 weeks.  Henry’s development was changing so quickly that we needed to frequent visits to stay focused on what we could do to help him.  And we got the support we needed… and more.  THANK YOU!  Now that Henry is older, we don’t need visits so often and usually see our therapists every 4-8 weeks.

We continue to so appreciate how they go above and beyond to help make our lives easier.  There really aren’t words to express our overwhelming gratitude.  Coming to our home means Henry is in his home environment.  We can work with what we have around us for therapy which makes it easier to consistently implement their suggestions.  And it’s much easier to fit therapy into our lives… versus fitting our lives around therapy.  It may seem like only a slight grammatical change… but anyone who has multiple medical appointments for any reason can relate.  At some point it seems like the appointments are your life and everything else (including just being a kid!) takes a back seat.

 

So… I guess all this rambling on is just my way of saying…

 

THANK YOU CFA!

…and I am sad to think all this might have to change and I am even more sad to think of the families who might not get the support they so desperately need.

 

Shelley

 

 

And the good stuff continues!

Today at breakfast Henry drank almost a full Ikea plastic glass of orange juice… that’s gotta be about 5 ounces!!!  Shawn filled up his cup 3 times… partially full each time, as finishing smaller amounts gives a feeling of success. Much more exciting to refill a glass THREE TIMES than to leave a full glass partially unfinished 🙂

Then this afternoon they made hummus and Henry ate three spoon fulls… Shawn figures one was almost 1/2 tablespoon full!  Swallowed… no problem… no concern… still chatting and smiling afterwards…

Yippee!!!!!

 

OMG… He bit off some bread, chewed and swallowed it!

This is amazing… like I’m giddy amazing… like Shawn & I were both dumbfounded amazing… 🙂 🙂 🙂 🙂 🙂 🙂 🙂 🙂

I know, there’s someone out there reading this who is wondering what the big deal is… but for everyone else…

HE DID IT!

Yesterday Henry bit off a piece of hotdog bun – about the size of a crouton – chewed it, and swallowed it!!

AND HE SAID IT FELT GOOD!

Before I go any farther… for our close friends and family – those people who will have the opportunity to see Henry… please read to the very end. 

There has been a lot of lead up to this… not just general progress over the past 3.5 years, but specifically in the past few months.

• First he learned how to drink through a straw, which told us he could swallow larger volumes of liquid.
• Then he “decided” he wanted to eat only through his mouth.  A great sentiment, but also a struggle as he didn’t want to eat through his tube.
• Then he started talking more about foods that “melt in my mouth”, and began asking if the foods on his plate would melt.  Shawn or I would take a very small bite of said food and count how many times we chewed it before it would “melt” enough to swallow.
• Over the past month he has been tasting, licking, biting and exploring lots of different foods.  He has done this consistently for quite some time, but this time it was different.  Typically he would try something for a day or so, and then stop and not try anything for a few weeks.  This time, he has been continuing for a longer period of time.
• And like most kids… he discovered ketchup!  And began dipping anything and everything he could find in it, just to lick the ketchup off :).

 

And then it happened.  We were having hotdogs last night.  He asked if the bun would melt in his mouth. Shawn took a bite and said it was about 10 chews for it to melt.  So Henry took a bite – and teeny, weeny bite… and we counted together.

1-2-3-4-5-6-7-8-9-10…

Then with some coaching he used his tongue to move the bread around and chewed again

1-2-3-4-5-6-7-8-9-10…

And then it was gone…. 🙂

“It’s in my tummy” he exclaimed!!!!!!

“And… how did it feel?”

“it felt good!… I’m going to do it again!”

 

And the process was repeated with a slightly larger piece…

Once again he bit, chewed, moved it with his tongue, chewed more and it was swallowed!

 

And then he did it again… but this time he took a MUCH LARGER BITE.

I have to admit, I was worried.  I didn’t think he could swallow it.  I didn’t want this experience to end with coughing or panic.  I wanted it to end on a happy note.  So we counted and chewed… moved it around… counted and chewed some more… moved it around.  I think he chewed it about 60 times.  His chew is quite ineffective, so it took a lot to get it to “melt”.  You could see the saliva just about ready to drip from his lips.  This was pushing his comfort level.  But he was smiling – there were no signs of panic.  And then we say it… a swallow.

Suddenly he opened his mouth and it was gone.  SWALLOWED!

“And… how did it feel?” I asked anxiously…

“it felt good!”

OMG… HE DID IT!!!!!

 

And now I have a request… for those people who know us well and will see Henry… please say nothing.  That’s right…. absolutely nothing!  It’s not that I’m trying to be rude, but we have found in the past that when people comment on what Henry has eaten… he stops completely.  I know that comments are meant to be encouraging, supportive, and friendly… but Henry appears to feel pressured by them and backs off completely.  So please… don’t even bring it up when he is around… not with him or with us.  We know that you are as thrilled as we are… 🙂

 

Cheers, Shelley