Monday, October 2, 2017

Decision Made.

It's been far too long. Only appropriate that I follow my last post was about the decision as to whether we should get Logan a cochlear implant with this...decision made.

Logan is getting a cochlear implant. It took us 15 months to make the decision. Surgery is scheduled for November.

We met with the surgeon for the pre-op appointment last week. When he asked if I had questions, I broke down. The tears started to fall. I am anxious, I told him. Jokingly, he said that he won't charge us for the $50,000 device that Logan is going to get, but for Kleenex, I'll have to pay. (We actually don't pay a cent for all of this.) He reminded me that some anxiety is normal. I know this. He stared me in the eyes and said, "I'm not anxious about this at all." That made me smile. He explained that this is a study and as a result, surgery must be done perfectly with minimal risk. He performs four cochlear implant surgeries per week and has been doing them for twenty years. It's going to be ok and I'm just trying to breathe.

When we received Logan's diagnosis, I immediately went into research mode. I was determined to learn as much as I could and speak to as many people as possible so that we could make the best choice for our child. I don't think I truly let myself grieve his hearing loss. I just wanted to fix it, knowing full well that hearing loss can't truly be fixed. After 15 months of it being a maybe, it became a definite. A definite with a date for a life-changing surgery on my baby boy's brain. It completely overwhelms me. The tears fall often and without warning. Thoughts and worries fly through my head in the middle of the night. I know in my heart that we've made the right decision but that doesn't make the next few months any easier. It's all coming out now.

So, why? How? What was it that helped us make our decision? Right after Logan's diagnosis, I was in touch with a mom of a boy who is about four now. He is unilaterally deaf, although I don't think his is quite as severe as Logan's. He does not have a cochlear implant, but his mom and I chatted about hearing loss and its challenges. We've been in touch and I recently wrote her to let her know that we are going ahead with a CI. She asked if I would mind sharing our decision making process. This is what I wrote:

We both walked out of our first appointments at Sick Kids saying 'no' to a cochlear implant. After a couple weeks of processing it all, I realized that I needed to learn more so that, in the future, I could explain to Logan why we made the decision that we did. 

I went to the Bob Rumball Centre (for the Deaf) and met individuals in the deaf community. I requested to speak to parents who have a child with SSD (single-sided deafness) and went ahead with a CI at Sick Kids. I joined Facebook groups from all over the world -- parents of children with CIs, parents of children with SSD, adults with SSD....I posed questions to these groups and scoured past posts. It was here that I started warming up to the idea of a CI for Logan. 

We all seem to know at least one adult who is deaf or partially deaf in one ear. I started speaking to those people too. They've lived happy and productive lives for sure, but it has not been without its challenges. One of my brother's best friends is completely deaf in one ear, like Logan. We spoke extensively. He explained the challenges of going to restaurants, work events, riding in a car, the fatigue etc. He is managing but it can be tiring and frustrating.This was a story that I heard over and over again from individuals with SSD. In adulthood, he had an MRI to see if he is a candidate for a CI. Sadly, he is not. He said that if this had been available to him as a baby, he would have wanted his parents to go ahead with it. Most of the adults I spoke with said that the challenges of SSD started presenting themselves once the children started school. This was a big one for me, as Logan's speech and language is currently on par or better than his peers. For the most part, he seems like any other child who has bilateral hearing. However, I have noticed his challenges in localizing sound. 

I've spoken with three parents of toddlers who received cochlear implants as part of this study. Two of them are nearly 2 years post activation. One of them was activated in January. All three parents said, without a doubt, that it was the best decision they could have made for their child. Testing is showing that their child's deaf ear is now hearing within "normal" ranges. This happened in less than 6 months post activation. 

In the future, he can choose to take the device off whenever he wants. Even though we are making this life-changing decision for him, we are ultimately giving him the choice. That was the only thing that the two of us could agree on for months! 

I spoke to the mom of a 22-month old boy, who received his cochlear implant earlier this year. The conversation with her couldn't have come at a more perfect time. While my anxiety and worries are still there, she has given me an idea of what to expect. It feels all-consuming right now, but she assured me that it is just a regular part of their daily routine now. She was me a year ago, breaking down in front of the surgeon. She gets it and that's more comforting than anything else. Within months of her son's surgery, he was hearing within a normal range in his CI ear. That is truly amazing to me. We are meeting up with this little boy and his family very soon.

We were born with two ears. We are meant to hear with two ears.


Logan and Finn

With his beloved "ba-pa"

On their first day of grade one

A trip to the zoo with their cousin

Hiking in Portugal. General update post to come :)

Friday, April 28, 2017

Decision?

Decision time?

We waited for nearly a year (from finding out about his UHL*) to find out whether Logan would be a candidate for a cochlear implant. There were many appointments and tests. Countless hours spent in sound proof audiology rooms. It was the MRI that would determine whether we would have options to help his hearing loss. If the MRI showed that he had some cochlear nerve in his left ear, he would be a candidate. If not, he would learn to adapt to hearing 
*unilateral hearing loss

A few weeks ago, Logan underwent an MRI under general anesthetic. I was anxious, but I wasn't the wreck that I was on surgery day. I set my alarm for 3:30am to breastfeed. 4am was the breast milk cut off for his 8am ultrasound. I woke early to force myself to eat breakfast. Logan woke around 6am. We arrived at the hospital for 7am and immediately changed him into his tiny hospital gown. We walked around, played with toys and sang songs. At 7:30, the nurse came in to ask a few questions, take his temperature and check his vitals. I met the radiology tech and the anesthesiologist. Logan quickly won the hearts of all of the nurses with his smiles and waves. 





At 8am on the nose, I lay my sweet boy on the table and told him that I loved him while the anesthesiologist held the mask over his tiny face. Logan was screaming, with a terrified look in his eyes. I stroked his head and I told him that everything would be ok. Within 10 seconds or so, his eyes started to flutter. A few more seconds passed and he went limp. They promptly booted me out (as they told me they would), so that they could insert the IV and wheel him into the MRI room. They prepared me for what it would look like as he was put to sleep. They even offered to take him from me if I thought that it would be too difficult to watch. Not a chance. It wasn't about me. It was about Logan. Of course it was difficult, but I wanted my baby to see my face and hear my voice as he was put to sleep. 

It took longer than expected. But man, that place is awesome. If your child needs to be in the hospital, Sick Kids is the place. The nurse came out right at the 45 minute mark to tell me that he was doing great and breathing on his own, but there was still some imaging to do. I had been told that it would take about 60 minutes. I was updated when the test was complete (it took nearly 1.5 hours) by the radiology tech who gave me a big thumbs up. Logan was in recovery and I was allowed to go in as soon as he started to wake. It took another half hour at least before he woke.

The kid is a force. When I went into recovery, he was in the nurse's arms. He woke and immediately tried to climb out of the crib! I breastfed him, hung out in recovery for another 30 minutes and was then given the go ahead to head home. 

Right after the test began, I went to grab some tea. As I sat in the hospital's atrium, I looked up at this poster:



It's massive. Obviously. I thought about how lucky I am. It's incredibly nerve-wracking to see my baby put to sleep for an MRI, but I got to take him home a few hours later. My healthy baby boy and I went about our day. After sitting in the atrium for a little while, I went back to the MRI waiting room. A very sick young child was wheeled in, attached to multiple machines, with two exhausted and worried parents following shortly behind. Have you seen Sick Kids' Mother's Day ad?

Last week, I received the call that Logan is a candidate for a cochlear implant. We have options and for that I'm grateful. Jenn and I now have a big decision to make. I'll leave it at that for now :)

Thursday, March 30, 2017

Logan is ONE!

Our sweet Logie Bear is one. Really 13 months and 13 days-ish. Oops. The year flew by in some ways, but then also felt long, particularly because of all of our sleep challenges.

"I AM ONE!"

I was extremely nostalgic leading up to his first birthday. Mainly because of the way that he journeyed earthside. As much as I've processed my labour and delivery, I'm not over it. I probably never will be. I guess I'll just eventually be able to be with it. But, this isn't about me. This post is about Logan turning one!

On the eve of his first birthday.




We celebrated our sweet boy with a small family dog-themed party. We ate delicious middle eastern food and enjoyed a tasty cake. The kids played and Logie happily crawled around amidst his favourite people. 






 His party ended up being right in the middle of a snow storm. We decided to head out for a little walk once everyone had left. He absolutely loved his first ride on the sled!




  • He is constantly babbling. He also says a few words, "da" (dog), "bye-bye" (with a wave!), "Pa pa" (Grandpa), "Mama" (for Mommy or Mama), "hi" or "halla" (hello). He will repeat quite a few sounds too. While I do worry about certain sounds not developing due to his hearing loss, he appears to be right on track from a speech and language perspective.
  • He will be having his MRI to determine whether he is a candidate for a cochlear implant in early April. The thought of him going under general anesthetic again makes me anxious, but I know he will be ok. We will receive the results of the MRI within days and then a decision will be made by the cochlear team. I've done quite a bit of research, including speaking to parents of children who have been implanted for unilateral deafness. I'm leaning towards wanting to do it, if he is a candidate. Jenn isn't sold on it yet. This deserves a post of its own!
  • Food! The kid is becoming a tiny foodie. He loves flavourful and healthy food. One of his favourites is my chickpea curry. He also loves my homemade tomato sauce that I pack with veggies and meat. He tends to prefer savoury foods, over sweet. I'll spice up his food with curry, turmeric, paprika, chili powder, cinnamon, cardamom, ginger and lots of garlic! He loves to feed himself, but will also let me feed him some of the messier foods. For breakfast, he eats toast with nut or seed butter, banana pancakes (literally just egg, banana and cinnamon), sheep yogurt with fruit and hemp hearts, homemade muffins, smoothies, eggs with fruit. He isn't keen on scrambled eggs, but I keep trying. He eats three meals per day and one or two snacks. He still breastfeeds about 4-5 times per day and drinks quite a bit. 
  • Sleep is slowly starting to normalize. He FINALLY goes through the night without breastfeeding. I had to cut the cord. The sleep deprivation was awful. He still wakes in the night, but typically settles himself in a matter of minutes. He is waking very early in the mornings, but hopefully in time, we can push that too!
  • 4 teeth! His top teeth finally made their appearance. It has made eating much easier for him. He's a giant suck when it comes to teething and doesn't handle it very well. The poor guy seems to be working on a fifth tooth. He's congested overnight and has a bit of a rash on his bum. During the day, he's generally happy and unaffected by teething. 
  • Playing with his sisters is likely his favourite thing to do. It warms my heart to see them play well together. He gets himself right in there and they always happily include him in their games. He is constantly being lifted, rolled, hugged, squeezed and carried. He usually doesn't seem to mind too much. The girls will put him in his play tunnel and pull him around the house or push him around on his little motorcycle (a favourite for all - thanks Allison!) We've purchased a few large items recently...which means large boxes! The girls have been in heaven, turning therm into dog houses and castles. Logan LOVES these box houses and will sit in them on his own when they are at school. He will chat to himself happily. 
  • He loves being outside. He is quite happy in the stroller, especially since I turned his seat to face out. We walk the girls to and from school each day and are often out at other times as well. We live in a very walkable neighbourhood, so I often run errands on foot. He also loves being in the carrier so we do quite a bit of that too. 
  • He participates in two gymnastics-style classes each week and LOVES both. He crawls, climbs, slides, explores and bounces for 45 minutes straight. We also do a music class once per week. He adores music and often bops his head and waves his arms. 

A Canadian boy and his Grandpa









Most of our family pictures these days are selfies...




His light coloured eyes need to be protected,
so says the eye doc.


Tolerant big sister

The kid climbs everything! 

His birthday present finally arrived and he is thrilled!