Tuesday, 28 July 2015

Eyes, Ears and Kidneys OH MY

A couple weeks ago we went down to London for a some follow ups.  Here's what came out of it:

1.  His eyes are still looking clear with no sign of the cataracts.  The doctor would like to do another eye examination under sedation to take a good look at his pressures and his optic nerves.  This will be happening in September.

2.  While visiting the Ivey Eye Institute , I stopped into the eyeglass store.  I had inquired the last time we were there about getting glasses for Gideon.  His eye glass prescription is +25 in both eyes and because he is so petite the glasses he needs are very small.  She had to do some research to find a pair that would work for him.  Well she found some!  I paid for them upfront and we should be getting them in a couple of weeks.

3.  We saw the kidney specialist.  Gideon's bad kidney has shrunk to 2.8 cm and his good kidney is looking fat and juicy.  This is what we want to see :)  Our next appointment with her will be a whole year away.  (Crossing our fingers that nothing new will creep up during that time)  Because of Gideon's undiagnosed syndrome, we'ill have to be on our toes.

4.  We had a hearing aid mold taken of Gideon's left ear.  I will being visiting the hearing aid clinic (only 30 minutes away-  Thank you Jesus for short car rides!) later this week with a new hearing aid.  The only issue here is that our ACSD funding (Assistance for Children with Disabilities) has still not been approved.  We applied for this many many months ago and have heard nothing back from them.  This issues has been on my radar for awhile, but life has been just busy enough that it stayed on the back burner.  Now that our lifeboat seems to be taking a leisurely jount down a lazy river, I think they will be getting a personal call from me later today.  


Gideon's food fight has continued to battle on.  The finger lights help, but his independence is raging and winning the war.  He will clamp his mouth shut when he see's me coming.  We have also had struggles with textures.  He does much better with very smooth textures (ie. yogurt) but not so well with lumpy textures.  Sometimes he will throw up a mucus mixture with the very first hint of texture.  Sometime he will just gag and make terrible noises.  He also will sound wet after/during a feed, which is concerning.  Occasionally he will even start to cough.  The speech therapist wants to have a swallowing test done to make sure he is not aspirating.  Aspiration is when food will go down into your lungs instead of into your stomach.  The food in your lungs can lead to infection/pneumonia.  It could also mean a modified diet lasting for who knows how long.  Let's all pray that he will be able to strengthen his swallowing and neck muscles to be able to eventually achieve a normal diet and that he will be able to be weaned off of bottles before he reaches the age of 5.  *sigh*  No, feedings are not going well.

Gideon is still struggling with his gross and fine motor skills.  He prefers to be on his back and will roll himself over whenever I place him on his belly.  The sitting situation is not fairing much better.  He throws himself back as soon as he is upright.  All of these issues further weigh me down in my decision about employment post Gideon.

Prayer of the day:  Lord grant us insight and discernment into the life changing decisions we are facing today in the midst of our grief and anxieties.  Grant us peace in our decisions, that they will be made in accordance to your will in our lives and not be made out of fear or angst. Quiet our spirits so we may hear your voice in the midst of chaos and strengthen our bonds to unite us in mind.  Amen.                          

Thursday, 16 July 2015


Born clouded and blind
The grey wool was pulled over
Your elephant eyes 

Tuesday, 7 July 2015

Food Fight

Introducing solids into Gideon's diet has been challenging.  Because of his eye surgery, he can't get anything in his eyes due to infection risks so this means playing with his food is not really an option because he could rub it in his eyes.  This lead me to making buzzing sounds and tapping my spoon against his mouth in hopes that he would open wide and eat what I had to offer.  BUT.... Every time I tried to feed something by spoon he would have a meltdown.  He would thrust his tongue out, arch his back and just generally complain a whole lot.  I tried shoving it in.  I tried scraping it on the top on his mouth.  I tried making him smile so he would open his mouth for a stealthy attack.  Nothing was working.

Insight of the day:  Having unknown things shoved into your mouth when you don't expect it isn't very fun.

So we took it back a notch.  I tried putting the spoon by his lips and just dabbing the smallest amount on there for him to try and taste.  He started tasting it.  I put my spoon by his lips and tried to have him be the one to initiate the bite.  Kind of like feeding a horse, the lips will smack a little, the tongue might come out for a taste but you don't put your hand right into the mouth.  There was some success with these methods but it was hit or miss and I really wasn't getting much food into him.  Gideon was experiencing the food but not really eating it.

That's when I decided to buy a light.  I found these finger lights at the dollar store- 4 lights for a dollar.  (Red, Green, White and Blue)  First I tried attaching the red light to the spoon.  Guess what- IT WORKED!  The light gave him something to look at and made eating a little more fun.  He also knew when the food was getting closer to him.  I think he was so distracted by the light that he just auto piloted the eating.  This is not to say that he is eating whole bowl fulls of food but I can at least get in 5-10 spoonfuls in which is huge!  

     Some pointers...

1. It works just as well to have the light on your finger.  (I snapped the strap on my red light by stretching it too hard to stay on my spoon.)  Having in on the spoon was nice though because you could point the light right at the end of the spoon where the food was.

2. Don't point the light right at your baby's eyes.  This light is pretty bright and I found it uncomfortable when pointed at my own eyes.

3. Try out different colours of lights.  There might be a preference to one over the other.  Remember that red is usually an easier colour to see for children who are visually impaired.

What tricks have you used during your food fight battles?