MRI / Hearing Screening / Genetic Testing

Oh geez. We had a little break from tests and appointments for Christmas, but the next week we hit the ground running, again. Here is a little bit of a dump of all of the updates we have from the last two weeks.

Hearing Screening

Our first appointment was with the audiology clinic at Primary’s. This was the first time Lydia has had an audiology appointment. We have wondered about her hearing before, but our doctor became really concerned at her last appointment.

And I just want to add right here, how grateful I am for Lydia and how calm she is during her appointments. Every part of her wee little body has been poked at and she is always so relaxed and I am grateful. It makes a difficult situation a lot easier.

They basically did the same tests they give for a newborn screening. Fun fact: Lydia was actually our only child to pass her newborn hearing screening. All of our kiddos needed follow ups (Sarah for over two years!). This time around, Lydia ended up passing her screening after a couple tries and then they took us into a booth to do more.

I was really confused about the booth test. They had various speakers in front of her and on each side and would have sounds coming from them but they were always accompanied by visuals from a screen above the speaker. I was really confused how they could distinguish whether she was responding to the sound or the visual stimuli.

I asked the audiologist about it but was still very confused.

Afterwards, we talked about things and that only got more confusing. I was basically told that they know she CAN hear but they cannot distinguish how well or if there is mild or moderate hearing loss.

This isn’t exactly great news. So I asked the question I find myself asking constantly these days…so what’s the next step? She told me the next tier for testing would be a sedated ABR {auditory brain response}. However, she didn’t know if we needed to go there yet. I told her she was going to have a MRI the following day and asked if she could have it done then but I was told that wasn’t possible.

So I left the clinic pretty discouraged. No answers again, and a follow-up appointment in two weeks for the exact same test.

Follow-Up Appointment

This is going a little out of order, but earlier this week we had Lydia’s follow up appointment. It was with a different audiologist this time. She performed all of the same tests but added a couple new ones.

One thing our speech pathologist locally had brought up when I was discussing our previous appointment was that perhaps Lydia might be having a problem with just the messages from the ear making it to the brain. This makes sense to me because sometimes it seems like she responds to sounds but sometimes she does not.

I discussed this with the audiologist and she said it was definitely something “on the table” but is {as you can probably tell} very difficult to diagnose {usually taking up to a year}.

Lydia basically performed the same as she previously did on the screenings. She can definitely hear but she is also not hearing exactly how she should either. If this sounds confusing to you, it does to me too!

We talked about what we wanted to do moving forward. And right now there seems to be two different possibilities that are at the forefront. First is the above condition where the nerves aren’t relating the information correctly to the brain. The second is that Lydia just doesn’t care about the screening in the booth.

This second scenario also makes sense to me. Lydia has a very passive personality and so I could see her simply not caring to respond to the sound. Rather than commit to a year of weekly tests in the booth {that we may or may not need} we decided to go ahead and schedule her sedated ABR to see what that finds.

We are not thrilled that she is going to have to be sedated again {especially since she JUST was sedated for her MRI} but that seems to be where we are at. Hoping and praying for some answers.

MRI

This was definitely the biggest event since our BIG appointment earlier in December. This was an absolute beast to get scheduled and was incredibly frustrating. BUT we were finally able to get it done and approved and even got it in before the end of the year {hello deductible!}.

Lydia was schedule for her MRI at 9:30. She couldn’t eat or drink anything that morning and she was so sweet and patient about it. I could tell she was hungry and my heart just broke that I couldn’t give her anything. When we got taken back, we reviewed her information with a hundred different questions. Then they had to get her IV set up.

This was no fun. This girl is just the sweetest. They had me sit in a chair with her facing me, like we were just having a nice snuggle. Then they stuck her. She looked up at me and it was like she was saying “you traitor!”. My heart hurt so bad as she quietly whimpered.

They gave me a couple minutes with her before they took her back to the room. Once they started the medication to sedate her, she quickly and quietly fell asleep in my arms. They would not let me stay with her and sent me to a random exam room to wait things out.

It was a very long hour.

They eventually came and got me and took me to the recovery area. It was so unsettling to see Lydia laying there completely unresponsive. The nurse was a little abrupt and seemed like she was in a big hurry to get Lydia up and out.

She wanted me to give Lydia a popsicle to wake her up and when I tried to explain that Lydia struggles with food, she didn’t seem to care much. I tried to give her some, and it was stressful. Little bits began to fall into her mouth and she would start to choke and I would have to scoop it out. Finally, I gave up and decided I would do things my own way.

I still don’t really understand why the nurse was in such a rush {we were the only ones in the recovery area so there were several extra beds}, but Lydia took a really long time to come out of it. It was hard to see her so limp and unresponsive. Lydia was still pretty out of it when they told us we could leave. But I buckled her into her stroller and we headed out. Once we got outside in the cold air, Lydia woke up and was so confused. She just cried and cried on the drive back to my parent’s.

Just before we arrived at my parent’s home, Lydia fell back asleep. It was about lunch time at this point, and I quickly gathered the other kids and we hit the road home. Before we left, I talked to Jacob {who sits next to her} about how we need to make sure her head didn’t fall forward. Every fifteen minutes I would have Jacob make sure she was okay and breathing normally.

She pretty much slept the entire time. By the time, we got home it was about 4:00 in the afternoon and she hadn’t eaten anything all day. I tried to get her to drink some Pedialyte. It was a bit of a struggle.

Lydia really struggled to get back to her usual self. The next day she was still pretty relaxed. And two days later, she started having white foam coming from her nose. It was strange.

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Results

A few days later, we got a phone call. Results were in.

MRI = NORMAL

Genetic Testing = NORMAL

Blood Work = NORMAL

I hesitate writing this out, because I am worried that it will come across as horrible. But hearing this was an incredibly mixed feeling moment. As grateful as I felt that things were normal, I was so confused. How can things be “normal” when almost everything about Lydia is NOT NORMAL? It is so hard.

We didn’t think we’d find out ALL the answers, but at least that we would have a direction. And we don’t. We have no idea what is going on with our sweet little girl. And I hate it. This has been the most helpless situation I have ever been in and it is getting to me. I feel so weighed down.

There have been so many blessings throughout this, and they are not lost on me. I have faith that answers will come and I have faith that whatever those answers are, our family will move forward together. I feel like throughout this I have been led to scripture after scripture about faith AND works. And I believe in that. But I don’t know what else I can do. It’s hard. I just want to help her.

I know this isn’t a very uplifting post. I wish I had news to share. But, right now, Lydia remains a puzzle. We have a telehealth meeting with our neurologist next week. We truly have no idea what the next steps are going to be. We would love and appreciate any prayers.