Back to the hospital again…

Henry was back in the hospital again with trouble breathing, for two full days and one night this time. Poor little guy… when he gets sick his little lungs just can’t keep up and he has to work so hard to get the oxygen he needs.

I feel like I can just copy and paste the post from the last time he was in… it was almost exactly the same.

He was up almost all night fussing… Shawn got almost no sleep.  I got up around 4 am and as soon as I turned on the lights I could tell right away something was wrong.  As before, he showed beginning signs of a cold during the day – runny nose, mild cough – so I plunked him into bed an hour earlier.  He didn’t complain so I knew something was definitely up.  But Granny had been over to play, so he was exhausted from that too.  Again, he wasn’t throwing up, which he often does when sick.

We used Ventolin and this time is seemed to help a bit, so we thought we might not have to go in.  But about 30-40 minutes later he was haven’t trouble again.  Unlike last time, when he said he needed to go to the hospital… this time he said he didn’t know.  But that didn’t surprise me as in the last week he’s stopped “knowing” anything.  “Mama choose” is his latest thing.  But what he did know was he wanted to go the hospital to see the bathrooms!  (hey… we’re 3… bathrooms are a big thing!).  So we had to be doubly sure we were going because it was actually hard to breath… and not just to check out the toilets :).

Same as last time, he has do much energy.  Even with almost no sleep, he was still on the move.   He helped pack the bag and get dressed.  He chatted the whole time and seems happy to be going for an earlier morning road trip.  I have to admit, even though he said he was having a hard time, I still second guessed my decision to go to the hospital… he just looked too darn energetic!

The intake nurse said that his lungs were clear (great!), but that he was definitely having increased work of breathing.  So we waited a few minutes for a room, and began the usual asthma protocol right away.

We were again optimistic we would get home sometime the next day – but it didn’t turn out that way.   In the ER, they couldn’t extend his Ventolin past 2 hours (4 hours between treatments is needed to go home), so plans were made to get admitted.  After being in the ER for about 13 hours, we finally moved upstairs.  The ER wasn’t busy this time, but there were no available beds in the wards, so we had to wait.  He and Shawn spent the night and we were home the next day by dinnertime.

Upon reflection, we should have given him Flovent as soon as he got sick, but I didn’t think about it.  We’re still new to this medication, so it didn’t cross my mind.  But I’m certainly remember it for next time!

In the end… we’re back home and back to normal.  Henry’s still coughing something crazy, which will likely continue for a few weeks as he tries to clear his lungs.  But we’re home… the sun is shining… and things are good.

Cheers, Shelley

Ice cube tray popsicles

 

Amina, our OT, has said many times that cold foods may help trigger a swallow.  Apparently the feeling of cold foods in your mouth can help signal to the brain that a swallow is needed.  So, to this avail, we decided to make popsicles!

 

We love popsicles around here.  Just about any type of fruit juice will do.  To make them a bit more “kid friendly” I decided to make popsicles in ice cube trays.  Shawn had the suggestion to cover the container in plastic wrap and then use toothpicks as sticks.  By pulling the plastic wrap tight, the tooth picks can be “punched” through and the wrap holds them in place until frozen.

The sticks ended up a bit crooked, but not too bad.

However, after all this work… Shawn & Henry had popsicles for snack today and Shawn ended up with the small one and Henry the big one!

Oh well… such is life.

This was Henry’s first exposure to popsicles this year… he licked it a couple of times, touched it with his fingers, and watched it melt.  Complete success 🙂

Cheers, Shelley

Eating ice cream (photos taken on the sly!)

We decided to have chocolate ice cream for afternoon snack this week.  I took a couple of photos – covertly so as to not mess with the ice cream karma!

While not such a flattering photos… it’s an excellent portrait of the ice cream mustache!

 

It was an interesting experience this time… he was very concerned about how much ice cream was on his spoon each time.  He kept saying “daddy help” – he wanted Shawn to scrap the ice cream off his spoon so he could try again.  I think the ice cream was harder than it had been, so he didn’t have as much control.  But what was interesting – he had a very specific amount that he was wanting to get on his spoon.  He couldn’t articulate it well, but over the course of a few minutes we could see what he was trying to accomplish.  He knew exactly how much he wanted in his mouth at one time.  Any more and he would scrap it all off and try again.

Just goes to show… he knows what he he needs and what he thinks he can handle.  Our job is to just support him as much as we can.

Cheers, Shelley

Food Pager… the joys of an active imagination!

 

Ah… the joys of being 3 🙂

Henry came to the table a while ago wearing his “food pager” and “food cell phone” (conveniently attached to the waistband of his pajama pants using a cord from his blocks).   According to him, the pager told him when and what to eat.  Each time before tasting anything he would hold the pager up to his ear to listen to what it had to say.

As wonderfully cute as this was to watch unfold, it really demonstrated how much his eating, or not eating, is becoming more of a choice.  Yes, he still has low tone, and yes, this certainly still affects his ability to eat.  But he’s also a very perceptive little 3 year old who watches everything that goes on around him.  He knows that everyone else he knows eats with their mouth.    And he knows that we want him to eat with his mouth when he’s ready.

 

But the big question is… what does it mean to be “ready”?

We used to think being ready simply meant having his muscles become strong enough to swallow.  Then we realized that he would have to learn “how” to eat.  Most kids begin learning from day 1.  Henry didn’t so now he is learning step by step what to do with the food in his mouth in order to get it ready to swallow.

But that’s not all… There is also a powerful mind game going on inside his little head.

Everyone wants to me to eat with my mouth.  I think I might want to eat with my mouth.  Other kids I know eat with their mouths.

VS.

Food in my mouth it doesn’t feel right.  I don’t know what to do with it.  I have strong memories of choking, coughing, vomiting and pain associated with food in my mouth.

 

So what to do…?

Creative play… aka… the food pager!

The food pager was around for about a week, and then on and off again for a while after that.  It still makes an appearance at times.  When it does we diligently listen to what it has to say, and respond accordingly.  After all… who am I to disagree with prowess of the “food pager” :).

Cheers, Shelley

ASTHMA

So… it’s official… Henry has asthma.

It was really rather anticlimactic, to be honest.  Nothing actually “happened” – he just got sick again.  This all happened a while back, I’m just a little late following up with the post.

The first few times Henry had breathing difficulties, they didn’t call it asthma – instead he had “asthma like symptoms”: lower respiratory infection and a viral lung infection. They couldn’t call it asthma until it happened an unspecified “few” times.  Well, I guess we’ve hit our “few” times, because our last discharge from the hospital said that Henry was admitted for asthma.

But the good news is (there always has to be some good news!), Henry’s type of asthma only seems to be triggered when he has a cold, resolves well with medication, and kids typically grow out of it in a few years.  However, apparently there is a correlation between this type of asthma and seasonal allergies in adults.  Go figure :).

The last time he was admitted to the hospital, it took a little longer to get his breathing back under control.  They added a third medication into his protocol this time – an inhaled corticosteroid called fluticasone (brand name Flovent).  Up until now Henry has only taken emergency type medications – those used during an attack.  This new medication is a preventative medication… to be used even when he is well in order to keep his lungs in good health.  Dr Hadad (our fabulous pediatrician) recommended that we slowly ween him off it over a couple of weeks and see how he did.  It was no problem and about 1.5 weeks later he was medication free with no worries.  Some kids use an inhaled corticosteroid all winter, but we don’t want to start that yet.  We’ll see how he does next fall.

So, with this Henry now has 4 medications he may take when having breathing problems:

• Flovent – an orange puffer – taken before and after a cold to help prevent and lessen symptoms
• Ventolin – the blue puffer that is commonly associated with asthma.  It is a “rescue” medication for during an attack
• Atrovent – a white puffer, he only takes it if given at the hospital
• Dexamethasone or DEX – an oral steroid, he only takes it if given at the hospital

There has been one time when he has needed a nebuliser. This is a machine that changes as liquid into a fine mist, to make the medication easier to inhale.  It is used in hospitals mainly, when a person is under so much distress that it is hard to breath in the medication from a puffer.

For all of his puffers, Henry used his “teddy bear” mask – an AeroChamber spacer.  This mask helps to ensure Henry actually breaths in all the medication from each puff.  It has teddy bears on the kids sizes – thus his “teddy bear” mask.

We’ll keep our fingers crossed that Henry stays healthy through the summer and into the fall 🙂

Cheers, Shelley

Things I’ve Learned Since Starting a Homemade Blended Diet

This month is the 2 year anniversary since beginning Henry’s homemade blended diet.  It’s quite a milestone to me… 2 years since I started taking a proactive, interactive, hands on role in Henry’s food.  No more opening a can of food and calling it dinner.  Now we lovingly grow, wash, buy, choose, prepare, blend, and serve Henry’s meals… just like most other parents.

It’s been quite a journey.  And one that I couldn’t have done without a lot of help – mostly from other families who also chose against commercial formulas.  For a variety of reasons, we all chose real foods… and what a great choice it was!  Yes, commercial formulas do serve a purpose, and for some families it may be the best option.  But it’s not the only option.

In celebration of our 2 year anniversary, I’ve prepared a list of things I’ve learned along the way.  Enjoy 🙂

Top 10 (or more) Things I’ve Learned so far…

1. Follow your instinct! Even if everyone you meet tells you otherwise… if you believe something may be true… keep trying!  I tried for months to find a cause for Henry’s vomiting, asking if allergies could be involved.  But because of Henry’s other health issues, allergies were dismissed time and time again.  As it turns out… he is allergic to wheat, corn and dairy!  Every commercial formula on the market contains corn, so it didn’t matter what we tried, he kept getting sick.

2. Be careful what you read! The internet is a wealth of information, but not all sources are created equal.  When Henry was first diagnosed with hypotonia, I went online.  What a mistake!  By the end of 10 minutes I read every horror story there was, and was more confused than ever.  Ask people you trust, ask for reliable sources to read, be diligent in checking a source’s biases and credentials before believing what you read.

3. It’s okay to hide in the closet and cry… just try not to do it too many days in a row :).

4. Yams, bananas and avocados should not be combined in the same menu... depending on the amount of liquid added, the resulting food will be thick enough to build a house with!

5. Ask and thy may receive… don’t ask and you likely won’t!  There are so many things that we have gotten for Henry – from his customized tray for his first custom seat, to appointment dates months earlier than expected – all because we’ve asked.   Be polite, be specific… explain why it would be helpful.  When it comes to appointments, tell people if you can come on short notice, if you live nearly, if you’re schedule it flexible.  People often cancel… by filling last minute appointments, you help out them as much as they are helping out you.

6. You are your child’s (or your own) best expert.  Specialists are highly educated people in their own field of expertise.  However you are your child’s expert, and a valuable member of the team.  Do not feel that your input is not valuable, and if someone else is making you feel that way – stand up for yourself (politely, of course!).  In our experience, specialists often see the world through their own area of knowledge… but many things may be caused by more than one option.  It’s our job to listen to all the advice, and then form our own conclusions based on what we’re heard.  Do not blindly follow advice you do not understand or fully agree with.

7. Keep asking until the answers make sense!  (Ask and ask again!) If you don’t understand something… keep asking until you do!  Baring emergency situations, most things can wait a little bit longer… long enough for you to better understand what is involved.  I was told by so many people that Henry would never tolerate a homemade blended diet, but the reason’s never made sense.  Yes, he has low tone.  Yes, this may affect his digestion.  However it never made sense why this meant he would not be able to eat real foods.  As it turns out, he tolerates a blended diet better than any commercial formula.

8.  You are not alone! Even if it is a blog from someone across the world… there is someone out there who can relate.  We felt so alone for Henry’s first year.  We basically didn’t leave the house until we had to, except for family events.  And only if we checked and double checked that no one was sick.  While this was needed to help keep Henry healthy… we were so isolated.  We were so alone.  We didn’t realize that all new parents struggled.  We didn’t realize that all new parents cried.  We just didn’t realize.  We did what we needed to do.  But upon reflection… we needed to get out more – even if it was just one of us as a time.  We needed to know that we weren’t so alone.

9. Food is so much more than vitamins and minerals.  By making Henry’s food ourselves, we empowered ourselves to be parents.  We lovingly grow, select, wash, buy, prepare and serve Henry’s food… just like most other parents do.  And it means so much more.  Yes, some people do need to eat commercial formulas.  They do serve a purpose.  But for us… real foods make such as difference.

10. Henry does not have “bolus feeds”… he “eats” through his tube.  Simple changes make a big difference.  Language is so important.  Feeding your child is not a medical procedure! Medical staff may need to use medical terms for their own purposes.  However you choose how you talk about mealtime… normalize the experience as much as possible.

11. A good blender is key to your success.  We use the Vitamix, but there are others.  When reading blogs beforehand, most people commented they liked the Vitamix, so that is why we got it.  It’s quite an investment, but if you’re using it for medical purposes, the company will give you a discount.  Contact them directly as opposed to getting it at Costco or somewhere else.  It worked out cheaper for us to go through the company.  We’ve had some problems with ours over the past two years, but the service has always been great and they get things done as fast as possible.

12.  Come up with a system that works for you.  I used to make Henry’s food daily, the same time as I made our dinner.  Now I make it is batches of 3, as this much as be put in the fridge and I don’t have to freeze it.  Whatever works best for you… a good routine makes things easier.

13 Syringe vs a pump. Go with what works.  Now that we’re using a syringe… it is soooooo much easier!  But Henry couldn’t tolerate using a syringe for a long time… he needed to slower, steadier pace of the feeding pump.  Try different things – try different syringes… find out what works for you.  Try not to get discouraged when the food goes splattering all over the kitchen wall (like last week!), or you realize the extension tube can undone and food’s been leaking out for that past hour.  It’s ain’t nice… but such is life at times.

And…

Hang it there!  It does get easier! 

Henry still throws up (but not near as much as he used to);

I still have flashbacks from his first months of life (but not as often);

We’re all a little scarred (but we will heal);

I still cry (but I don’t do it in the closet);

It used to take us an hour to “feed” Henry.  And then we would not be able to go for a car ride until about an hour after he ate, because he would likely throw up.  Now, he eats with a syringe… it’s takes about 20 minutes… and we can hop in the car and go.

Life keeps changing and we keep learning more.  Cheers, Shelley