Jordy loves skating! And he doesn't even need the trainer you see here!
This was taken at a trip with his CHSC class to the rink
Last day of school before Spring Break happened to be St. Patrick's Day
and Egg Hunt day too!
Our annual tradition of a mini-getaway for Spring Break took us across the Georgia Strait
to Vancouver Island. We snapped a pic in the Ferry queue.
Literally the LAST DAY of school before Christmas Break way back in December, Ning, the school audiologist told Chris that some malfunctions with Jordy's HAs while using the FM system in class prompted her to run a few tests and warned us that they were inconclusive but caused some concerns. She told us to be prepared for more tests after the holidays and possibly sending his HAs away for servicing. Hm... Okay. We tried not to worry.
Our Cottage rental at Port Renfrew, "Blondie's Hideaway" - so cute! We all loved it.
View from the cottage community deck. That is the Pacific Ocean!
And Cygni greets a friendly banana slug
Sure enough, once school is back in session Ning decided that she had best send the HAs off to Phonak for servicing, hooray for warranties! We got them returned in less than a week and she ran a standard battery of tests to ensure they are working a-okay and are programmed specially for J-man. Once she verified that the HAs were working properly, she ran the standard hearing tests on Jordan. As you might guess, the results were not good. They indicated a significant hearing loss in his right ear, which has always been the worse of the two. His hearing deficit was now severe to profound!
To be honest, we had been experiencing some behavioural issues with Jordan in November and December, and hindsight being what it is, I am now certain that his hearing probably began to deteriorate at the same time he began hitting more, being anxious about school and tearful when I would pick him up. This is a perfect example of Jordan being unable to verbally express negative emotions and advocate for himself, and the subsequent repercussions of that disability. How much sooner could we have diagnosed this hearing loss if he had simply told us?
Botany Bay in San Juan de Fuca Provincial Park
Now, Chris and I have rolled with the punches pretty well up to now. When the audiologists told us at 8 weeks old that he was hard of hearing we had one day of trepidation, fear and sadness before we shook it off and got to work educating ourselves. When his education team started to hint that all was not as it should be in his social development and urged us to have him assessed and then when the diagnosis for Autism Spectrum Disorder came down we were prepared and frankly, relieved. But the possibility of him losing his hearing completely had us quite upset. This kid is a listener. And he LOVES music and singing. Neither Chris nor I could countenance having that taken away from him.
We made an appointment with the pediatric ENT, Dr. Kozak, at BC Children's Hospital who had seen Jordan as an infant. It took us several long and anxiety ridden weeks to get in, but we finally did on March 16th. Excellent news! Jordan has fluid built up behind both of his eardrums. Which means that he needs tubes inserted to drain the fluid. Once that is done he should hear the same as he did before Christmas Break. Phew!
The tough part is that we now have to wait for the call that we have a slot for the surgery. It is a rather minor procedure that would normally not require sedation on an adult but since kids tend to be anxious and squirmy it will require several hours in hospital and a general anaesthetic. In the meantime his hearing is noticeably worse. Conversation levels that used to be okay now prompt either him to request a repetition or us to ask if he heard us. We should get a call from BC Children's Hospital sometime in the next month. I know that Jordan will be so happy when he can hear as he used to! And I am looking forward to it too. Gotta hand it to the kid though, yes, he had a hard time understanding at first that his hearing had gotten worse, that Ning had to increase the amplification on his HAs. This kind of change seems straightforward, but can be overwhelming and mentally draining for Jordan to adjust to. After the adjustment, he would often feel the sudden increase in sound to be too much and require a break; we would allow him to remove the HAs for a limited time. Well, while on a break, he would eventually get frustrated when he couldn't hear his iPad or his favourite program without cranking it beyond what the rest of the family could tolerate. But once we pointed out that if he couldn't hear he needed to ask for his hearing aids again, so he did. He's a good lad when you explain things. Until we can get that procedure done, he is coping.
Jordan enjoys holding his new cousin Matthew
Isabella, Jordan, Cygni, Bianca & Daniel eagerly anticipate the hunt
while the adults hide some Easter Eggs last weekend
I caught a nice break today too when I was talking to a mother who I met through Cygni's dance class. Her son and daughter were over for a play date and when I found out she worked at BC Children's Hospital as an assistant anaesthesiologist I mentioned Jordan's imminent procedure. She knows that Jordan has a hard time in new situations and offered to do a practice run with him to prepare him for what to expect before going under at his surgery! How lucky are we? I had no idea that I had such a resource within my acquaintances. I accepted, of course! So I am hoping that with her assistance we can minimize the stress and anxiety of Jordan's hospital stay. We will let you know as soon as we know more. Forgive us for not mentioning our concerns sooner, but we didn't know what to tell you. We didn't see the point in worrying everyone until we knew more. And as you can see, we made the right decision because Jordo does NOT have a sudden onset of progressive hearing loss! Things are going to be all right. Look forward to a post-op blog post soon!
**********UPDATE: We have a surgery date - Next Friday 8 April**********
We hope you all had a Happy Easter! I know these kiddos did!
1 comment:
It's too bad that Jordy is struggling to hear, but what a relief that there is a reason and the reason has a remedy. Whew!
Tina
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