Category: ABR

Malaysia

So we are not in Nepal! Not sure if you all caught that at the end of the last blog. We rerouted from Indonesia to Malaysia on November 11th. Our plans changed for several reasons.

Our last week in Indonesia was pretty tough. We were all travel exhausted and the effects of constant transition were taking its toll on our family. I was down for the count, knocked out by something that we thought was dengue. Two blood tests later and I still do not know what I had, but the kids caught a version of it as well.

Picture this:

Hottest week to record in history in Makasar, Indonesia. Constant fevers making it impossible to leave the air conditioned bedroom of the house that we were staying in, that just happened to be located directly next to a mosque who blasted the call to prayer over a megaphone 5 times a day.

Talk about being in a dark spot.

More significantly, Jackson had a noticeable decline in hearing again so we knew we needed to get his hearing tested sooner than waiting until we returned to Thailand in December.

So we booked flights to Kuala Lumpur, Malaysia and checked into an airbnb which later would become 1 of 5 Airbnb’s over the course of our stay in KL. Oh yea, before getting to KL we had already stayed in 9 hotel/houses in 2 months time.

We knew that we would be living nomadic for our 3 month forced exit from India, but we averaged a new place every 5 days. Can you feel my pain????

On the bright side, we knew we were making the right decision for our family and we had an ABR (sedated hearing test) scheduled for Jackson at Gleneagles Hospital 2 days after arrival.

Garrett, Gracelyn and myself also had checkups and walked away with 3 prescriptions each. How does Adam avoid this? I think someone needs to create a vaccine from his DNA.

We spent the first 4 days in KL returning to the hospital. Ill explain why in a bit.

But we also spent our time in Malaysia walking through Chinatown to the Pavillion Mall, taking grab cars to Suria KLCC mall and outdoor playground, visiting the Petrosains twin towers, eating donuts, visiting indoor playgrounds, going to the movies and seeing all of the christmas decorations up all over town.

Not sure if I am the only one who has noticed. But it seems everywhere we have gone around the world, marvel characters seem to be there!

Thanksgiving came during our time in Malaysia. At first I did not want to celebrate. Too many expectations to meet or let down during such a transient time. But we made some friends back in Indonesia that happened to be in KL and they invited us to join them! I never expected to celebrate Thanksgiving, and see Christmas decorations everywhere here in Malaysia, but I was grateful for both.

Well, as for the results of Jackson’s hearing test, little did we know our small re-route from Nepal to Malaysia would bring about a major re-route by the end of the month.

We had suspected a decline in jacksons hearing but we didn’t know how significant. Jackson’s hearing is now at a severe hearing loss level. This makes 4 declines total in his 4 years of life.

At this point we have been told that it is time to consider cochlear implants.

Back when Jackson first received his hearing aids we attended a support group for families of children with hearing loss. Many of the children in the group that were Jackson’s age already had cochlear implants. A representative from cochlear came and spoke to the group. I felt compelled to ask questions and take notes, as if this was an inevitable part of our future.

When we found out Jackson has Ushers Syndrome type 2, we were told to check his hearing every 3 months due to his rate of decline, even though ushers type 2 is not typical of progressive decline.

I just had a feeling we were headed this way.

With Ushers there is inevitable vision loss at varying degrees making it even more important to stabilize hearing.

So here we are now, almost 1 year since he received his hearing aids and we find ourselves spending the majority of our time scrolling websites about cochlear implants and discussing possibilities for surgery.

After considerable research and counsel from his audiologist in orlando, we know now that he is a candidate for cochlear implants, that he has maxed out his current hearing aid capability, that his hearing has declined roughly every 3-6 months and dropping and that the window for speech and language development is closing rapidly. Because of this, after great prayer we have decided it is time to return to the U.S and begin the process of pursuing cochlear implants.

Before we left for India we knew that he had hearing loss caused by Usher’s syndrome. At the time, we felt that we had everything we needed to care for him well even in india. We did not expect two declines in hearing while overseas.

It is clear now that we do not have all we need to care for him and our family unit well and thus we will be headed to upstate NY where my extended family is while we pursue cochlear implants for Jackson. During this time we will wait on the Lord to guide our next steps.

Being rerouted is hard. Having to wait is hard. Not understanding is hard. And trying to make sense of it all is exhausting.

Our journey has been one with setbacks and times of riding the wave, it has held changes in plans, open doors and closed ones.

Through it all we have tried to rest in the things we know to be true. The things true of ourselves, our needs, our abilities and limitations. Things we know to be true for the season we are in. And always the truth of who Jesus is and who we are as believers and followers of Christ. He is good, faithful and sovereign, no matter what. “He is our refuge and our strength, an ever present help in times of trouble.” Psalm 46:1

It is not our circumstances that makes this true, it’s the calm we experience in the presence of our circumstances. The calm that only comes from the Holy Spirit. The “peace that transcends all understanding.”

And with that, all we can do is the next right thing.

Yes, you heard me. I just quoted Anna from Frozen 2. But in all fairness, we saw the movie twice while here in KL and those songs are now engrained in my mind. And confess, I may have teared up during that scene.

So the next right thing for us looks like heading back to India, packing our bags and heading to the US.

Please pray for our family as we try to repack and transition once more.

Week 9. Perspective is everything.

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things.” Philippians 4:8

I was ready for monday. I am NEVER ready for monday. Maybe it was the pool party we went to on sunday that left me feeling refreshed and ready for the week. It was awesome. Held at what felt like an oasis in the middle of the city with several other expats. A pool to beat the heat, other kids for our kids to play with, food and a welcome influx of advice on things like grocery shopping, business, medical care, travel, education etc…

And we had a victory! It is always good to start your week with a victory. This was a win over ear infections. I read that mineral oil in the ear prior to swimming can help prevent ear infections. After the doozy of infections we had the last time we swam in a pool here, I was all for it. I can only imagine how I appeared. Me, carrying a small tupperware of liquid in a ziplock bag. However, if I put it in my bag, the coconut oil would have made a mess! I am convinced there is NO container in the world that coconut oil doesn’t sneak out of. I just kept imaging the locals thinking, “strange american.”

The week began with Garrett losing his second tooth and since the Indian tooth fairy was already “planning” on coming, Gracelyn decided to finally trade in her 3 teeth she had saved from her teeth extraction in Florida. Yes. She saved three teeth. And Yes, they came all the way to India. But kudos to her. She scored 30 rupees. My kids are learning to save!! Although, The “tooth fairy” must be careful not to overgift, else we will end up with a pet dog since that is what they are saving for!

One of several notes that Gracelyn left for the tooth fairy.

This week we also had two more yoga classes. I was a bit apprehensive for the next session considering how sore I was over the weekend. We so enjoy our yoga time though because we have an incredible instructor who is also a friend. Gracelyn is convinced that she is ready for the next level, where I am gladly accepting the modified positions.

If I am evaluating the week in terms of wins and losses, UBER was a total loss this week. We have not bought a vehicle yet, and taking uber is currently more cost effective. But every time I requested a car this week, the car would just sit there on my app, not moving.

10 minutes later, still waiting and overheated and frustrated, I would cancel my uber. They would still charge me! And then I would have to hail down a tuk tuk. Sounds easy except for the fact that most of my rides are brief and worth 50 rupees. A non-uber driver would charge me 150 rupees because I am a foreigner. I argued with one driver that I would absolutely not pay more than 50 and I ended up having to get out and look for another!!! In fact, I was so irritated by it that I asked my language instructor how to let the drivers know not to mess with me! I learned how to say, “Main Bevakooph nahin hoon”, aka- “I am not stupid.”

Another win this week was getting my Kurtas back! Remember how I said I sent them out to be pressed and then did not hear back for over 10 days? Well, no foul play! She was at a wedding! Weddings are a HUGE deal here. As soon as she got back, I got my Kurtas back.

In the arena of evaluating wins and losses, the next couple updates depend on the perspective. If you are viewing from the lens of health trouble equals loss, then we had some losses this week. But I am viewing from the lens of whether or not the healthcare we need exists here. So, from that perspective, we had some major wins! That does not mean I did not experience bouts of anxiety, frustration, sadness and fatigue- because I did, without a doubt.

But long story short, We found out that Jackson has Bilateral sensorineural hearing loss in December 2018. In January 2019 Jackson got hearing aids fitted. In March 2019, after months of tests we found out that Jackson has Ushers Syndrome Type 2. This is a genetic condition that causes hearing loss and eventual vision loss. This is the short version of our journey with Jackson’s hearing loss.

Here in India, we knew we would have to establish care and check his hearing every 3 months. After a couple ear infections and an increasingly louder 3 year old, we suspected his hearing was changing. We were so grateful to find an ENT and an audiologist within 5 minutes from our home! Remember, perspective.

I had a folder full of reports on all of Jackson’s medical history and I confidently strode into the audiology office ready to get a hearing check up. Soon I was to find out that there was too much room for error between the audiology test he had in the U.S, and the one here. This meant, that in order to get an accurate reading on his current hearing level he would need to be put to sleep and have another ABR test done. As much as I was freaking out inside, I knew we had to get this done to see if his hearing had declined and then have his hearing aids reset.

“Mam? Give this medicine to your son and when he is asleep we will begin the test.”

HAHAHHAHAHAHAHHA. You want me to give Jackson medicine, without any nutella or anything? Oh boy. After a few attempts to get the medicine down his throat in the office we were asked to take him outside and try again. I am guessing because his gag reflex was too much for the floor and the other patients.

Fast forward a few hours later, we had given up. Mom and Dad-0, Jackson-1. We got into the tuk tuk, hot, exhausted and defeated. Five minutes later when we arrived home, Jackson was asleep in my arms! You bet we turned right around and went back to the doctors office. I felt like a war hero carrying my 43lb son up 4 flights of stairs in the middle of 105 degree heat to get him back to the Doctor with enough time for her to conduct the test before he awakened.

An hour later we had the results. 24 hours later we were discussing them in her office. 2 hours later his hearing aids were reset and another hour later we were on our way home. Notice I kept saying, hour later?….. So if you can imagine all the time in between, with a 3 year old who has no volume control, refuses to do what anyone tells him and his favorite activity is to pretend to be a dinosaur. I was toast. Cooked. Fried.

BUT! Perspective. My Son could hear! Amen and Amen and Amen.