NEURO APPOINTMENT

Jonathan had his appointment with Dr JWong, Neurologist at KK on Thursday 17th March.

This is what we did:

1. Measured height - he has grown approximately 10cm from the last appointment about 1.5 years ago.
   I took him out of the buggy and made him stand while the Harith held his body, I put his feet down and the nurse took the measurement.  It was just a rough estimate.
   
2. Took weight - not much has changed since the last appointment with the Dietitian
   
3. Discussed about his motion sickness.  She said there are 2 possibilities for this.
   A)  Ear balance.  Inside our ears, there are little hairs that are swerved to one side.  If there is water or anything inside the ear, the hairs will start swerve too and fro and that causes ear imbalance and thus a person will feel giddy or nauseated.
   B)  It's the brain that makes him feel this way.
   She checked his ear and his ears were ok.  So point A is ruled out.  Something that we have to deal with each time we go out.
   
4. She checked his spine, at the same time saying the Convaid Cruiser doesn't really give him good body support.  But proceed to ask if we had another better support chair with full support, which we do when we got it from Make A Wish Foundation (HERE).  This Convaid Rodeo gives a better support to Jonathan's body.
   
5. A physiotherapist was present during our appointment so he checked Jonathan's legs and we talked about AFO (Ankle-Foot Orthosis).  I wanted to do another pair because he has outgrown the old pair made a few years back.  DrW suggested SMO (Supra-Malleolar Orthosis).  The PT mentioned that if I wanted to practice walking with the SMO, it will break easily because it's not meant for that type of exercise.  I will post more about this later with pictures of how we got Jonathan fitted with the AFO after he was seen by the Orthotist/Prothestist.
   
6. We spoke about him leaving school.  DrW felt he should continue but then she said that the stress would be there for both of us.  She tried to find a way for us to get home therapy but the cost was way to high, stating that home therapy charges are now at least SGD150 per hour.  I intend to register him for therapy at the Society for the Physically Disabled at Tampines.  But right now I haven't done it yet.

That was about what we did for during our appointment.  We got our referral for Jonathan to get him fitted with the AFO/SMO and immediately there was a blank spot for the Orthotist to see us, which was great!  More about it in the next post.



For the record this time around, Jonathan did not throw up after we reach home.  Praise the Lord for that.

17 YEARS OLD

Harith and I turned 17 on Saturday 12th March.  It's been a year since I posted HERE.  But nothing much as changed except our age.  haha.

We didn't go anywhere to celebrate.  We just stayed home, had sushi delivered, said a prayer for ourselves and Jonathan and enjoyed each other's company, especially Jonathan's.

Thank you for loving me these past 17 years Harith.

I LOVE YOU <3

WHEN YOU'RE ON MEDICATION

That's when you really need God's strength and grace, especially when the medication gives you heart palpitation and side effects and it makes you really edgy.

And especially when your child wakes up in the middle of the night just when the medication sets in and you just can't open your eyes.

I was irritated.  I was upset.  Upset that I had fallen sick.  Coughing away and letting Jonathan get it.

Just when I thought he was better, his nose was blocked tonight.  Woke up at 4am, fidgetted so much trying to go back to sleep, kept asking me to carry him upright.  I started speaking louder than a whisper and of course that woke Jonathan up even more.

He just couldn't go back to sleep.  I wanted to give him some milk but he refused; only to relax a little later when I was less edgy and agreed to be fed.  Told me that he'll go back to sleep after his feed.

Changed his diaper after that, i decided to turn on the computer to get my mind off things earlier.  He was able to relax more and started making gentle conversation with me.

A few seconds later, his eyes closed and he fell asleep.  I can still hear him trying to breath through his nose.  But he's just adjusted his position and has now returned to sleep.

It's 5.12am.  Raining outside and I'm coughing again.  Decided to take the cough mixture.  Although I can't fall asleep now, I'm sure the medicine will kick in soon and I'll be feeling drowsy.

But for now, I'm entertaining myself on youtube, watching the American Game Show "Family Feud".

"Lord, I thank you for grace and strength, especially when it comes to the affairs of Jonathan.  Patience is most needed and when things get out of hand, please take FULL CONTROL of it for me.  Because when You are here, please remind me Jonathan is innocent in all these and I'll be able to calm down.  Thank you Lord."

SHORT SESSIONS WITH JONATHAN

I will sit with Jonathan on the mat, my legs crossed over his and I will take the time to exercise his brain.

Meaning?

I will give him a list of words to spell.  He's still good at sign spelling.  I will give him a choice of 2 sign language alphabets and he will touch the letter one by one.  For him, spelling is easy.  He's pretty good with consonant and vowel sounds, although he does make a mistake here and there with longer words.  Tribute to the Wheel of Fortune LOL.

Then I will give him some simple (really really simple) math problems to solve.  It's been a while since he's done that so I gave him this question:

You have 12 pencils and your friend borrowed 5.  How many do you have left?  Give him a choice of answers and he picks 7.

I'm thankful he can calculate mentally.  That's one of his strong points.

After all these, we will have short a short conversation.

Me:  Do you want to use the alphabet board to spell or talk?
Jon:  No
Me:  Do you want to use the communication program that Auntie Vicki gave?
Jon:  No
Me:  You prefer to use the sign language alphabets?
Jon:  Yes
Me:  Why?
Jon:  Because it is faster (given choices of answers)

He loves it when I sign a song, although my sign language is way below par.  haha.

I still haven't started him on the communication program that my friend passed to me.  And I haven't registered him for therapy yet.  But for now, it's standing for a short time once in a while.

Today, he caught a cold again.  Woke up last night at 4am and didn't go to sleep till almost 6am.  He was so tired today that his immunity just dropped and he started having lots of secretion.  But thankfully, he's able to sleep now.  Hopefully no more thunder and lightning to wake him up.

I'm still coughing and perhaps that's why he's caught it from me again.

Praying tomorrow will be better.  Thank you Lord!

RIBBONS AND SUCH

I'm running out of ribbons.  Actually I do have a tiny box of ribbons but they are old and outdated.  And I'm also out of Rick Racks.  So today, I went down to People's Park to get my stash of ribbons and while there, found some really cute and lovely wood and plastic buttons.

Rick Rack ribbons are my favourite!  I bought 8 colors at $0.40 / yard from a button shop there.

Beautiful swirl ribbons and flower lace

These buttons (below) were from another shop also at the same building.

Plastic flower buttons ($0.20/pc)

These wooden buttons range from $0.50 to $1.50

I also found these lovely roses from the same store at $5/yard.  I don't know what use that will be but I just decided to buy it because I don't know when I'll go back there again.

Here's another birthday card order.  I bought a quilling set many years ago and decided to take it out to decorate a birthday card.  I just layered a few colored cardstock, white being the base.  I used foam alphabets.  Kinda got stuck because the white part is a little sparse.  But Harith said it's ok to leave it as it is.  what do you think?

Here's a closeup:

{Note:  What is Quilling?  CLICK HERE}

What do I plan to do with all the "old" ribbons?  I thought I'd just lay them on a cardstock to make it into a ribbon pattern paper.  Hope it works out.  Will post it when I'm done.  That may take a while :) hee hee

Thanks for dropping by!

CHEST PHYSIO

and that's what I've been doing for Jonathan.

When Jonathan was young during his early years between 1 and 5 years old, his frequent hospitalization has sort of taught me a few medical skills.

One being the chest physio.

While it's hard to watch what is done to our children who have special needs and going through pneumonia, this chest physio is vital to help get rid of the sticky phlegm that accumulates in the lungs whenever they lie down to much or not so active.

More so, during those times, I wanted to learn so that I could help him at home and avoid hospital stays.  As many of us moms and dads know that staying in hospital is so tiring, although medical care is at arm's reach.

Two weeks ago, Jonathan came down with the flu.  His lungs were quite noisy.  So besides the ventolin inhalant we had to administer, I was reminded to start chest physio.

Even though he's recovered, I still do it now.  Once when he wakes up in the morning and another during the afternoon.

This is how I chest physio.  I will cup one of my hands, as like a bowl shape.  Then turn him to one side.  Some therapists will put a towel over the side of the body where the lungs are (but I usually don't.)  Then i start patting.  After I have patted for a few minutes, I put both my hands over the side of the body.  When Jonathan exhales, I vibrate the lungs with my hands.  This is supposed to loosen the phlegm.  And the vibration is done only when Jonathan exhales (breath out).  I then repeat the other side of his body.

Normally for a child who doesn't know how to cough out the phlegm, suction is done.  But for Jonathan, he already knows how to cough.

I used to have to "feel" Jonathan's breathing.  But now, he's good at it and knows what to do whenever I administer the chest physio.  When I say "breath", he will inhale deeply and then exhales.


If you need to do this for your child and not sure what to do, there are some video clips on Youtube.  Just type in chest physio.  But the best thing is to still seek a doctor's or physiotherapist's help.

Wishing everyone healthy!