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.                          


  1. Glasses!! Wooo hooo!!! Sorry to hear Gid is still fighting food :(

    Love you guys & will call this weekend for a chat xxxo

  2. The glasses are super cute! http://miraflex.it/mini-baby-3311 They are in navy blue. I'm really excited. Just hope he keeps them on.