Only the Happiest Updates to Share

I know it's been way too long since I've updated. Things have been nutty with selling our house, buying a new one, and all the craziness that comes with just living in our house. I promise things are bound to slow down soon, and I'll be better about posting more often.

I did want to be sure to stop by and leave some AMAZING NEWS on Liam. HE IS TOTALLY OFF OXYGEN!!! Don't adjust your screen or check to make sure no one dropped something in your drink. You read that correctly. Liam is free of his tether. And he is doing amazingly well!!!!! He does still have one more test to take at home to check his sleeping oxygen levels, but that's about it. We are so excited for him.

He's also learning to leave his hearing aids alone for longer and longer stretches of time. He has found his voice, and loves to use it. Hopefully he'll eventually get to a point where he can use his voice to actually form words. One can hope, right?

Moderating Comments

Some of you may have noticed that I have a regular commenter on my blog who uses Chinese writing every time. I have set the blog up to require comment verification, and that hasn't filter this particular poster out. Clicking on his/her writing will lead you to a pornographic website. To prevent this from happening, I've had to set it up to moderate comments.

PLEASE continue to post your amazing comments. It helps me feel like I'm not talking to the wall when I write. I will approve them all as quickly as they come in. Well, not all. The porn site will no longer be a problem.

An Exciting Accomplishment for Liam

I've mentioned several times about Liam's oral sensory issues and his difficulty learning to eat. It has been a very slow process with continual progress. He has gone from only taking formula to accepting yogurt to accepting most anything in his yogurt to pediasure. Progress, progress, progress. It's so great to see him making leaps and bounds in something so very important.

So what is the big exciting accomplishment? Banana. Yep. That's it, and it is truly an amazing thing for him. It's not just that he's eating mushed up bananas. Tonight, I took his spoon and just used it to break off pieces of banana.

He took the food off the spoon, moved it to the side of his mouth and CHEWED. HE CHEWED!!! And then, the biggest thing of all...HE SWALLOWED IT!! Go Liam! Since he did so well, I handed him 1/4 of the whole banana just to see what he'd do. He ate it!!! He self-fed, bit pieces off, chewed, swallowed, and went back for more. That kid ate the whole dang banana!!

He is also signing up a blue streak. He isn't quite to where CJ was at his age with signing, but he is catching up. I'm so excited for him and for the amazing steps he's taking in progressing toward becoming the amazing person he's destined to be. I couldn't ask for more.

The Decision Was Easier Than We Thought

We are going to move to the area closest to Byron's work. After lots of research, we have discovered that the ward area we love so much doesn't have one single house in our price range that would meet our needs. That made it a pretty simple decision. I think we will benefit from amazing friendships in the other ward even if we don't live directly in their boundaries.

Our Hearing Loss Blog Has Brought Us Blessings...and Hard Choices

Decisions, Decisions

I may have made mention of the fact that we are being relocated. Things have really fallen into place and the Lord has made clear that it is absolutely His intention for us to go to this new place. While we hate to leave behind those that we dearly love here, we know there are blessings to be found there. Hopefully we will also be able to bring blessings to those we meet.

We have a big decision to make right now, though. Where should we live? The decision was going to be quite simple until last week when everything changed for us.

A few weeks ago (maybe even a couple of months), I got a message on my hearing loss blog about a boy who was working on his Eagle Scout project. He was creating a blog and a website for deaf and hard of hearing kids like himself to get to know each other and share stories. The poster asked me to put a link on my blog to his and then to write up a story for his website. No problem. I posted the link, and then went over to his site and told him he could use any stories or experiences from my blog he wanted.

Last week, he e-mailed me and said he’d noticed that I had “I am a Child of God” and “Teach Me to Walk in the Light” playing on my blog. He asked if I happened to be LDS. I told him that I was, and he then asked to friend me on facebook. I agreed.
About a day later, I got a PM from him saying that he’d noticed that I mentioned moving to the place we're going to. This shocked him because he lives there. His dad is the bishop of his ward. He was so excited about this. To be honest, I was stunned. My blog has been up for over a year now, and this was the first time I’d made contact with him. It just seemed like things were falling into place.

We exchanged questions and answers, and I learned that his ward has him and TWO OTHER FAMILIES WITH DEAF CHILDREN. There are 3 year old twins and a 9 year old girl who all have hearing loss in his ward. This is totally unusual for a hearing ward. Plus, all their youth know ASL because this young man has taught it to his peers. Built-in babysitters.

I spoke with the young man’s mom the other day, and she describes the ward as if it’s like the amazing one we’re already in. It’s small, but not minute. There are other parents who have already juggled the school district and told us which schools are great vs. which ones are not. Their ward is having a dinner and silent auction fund raiser for the youth on one of the nights we’ll be there looking for houses, and we were invited to join them that evening. We will be there.

Then, my bishop from when I was a youth contacted me to give me the names of some of the people he felt could help us find a good ward. He had lived in this place, and found some good people. That sister called me today and went on and on about how great this young man’s ward is and how happy we’d be there.

It’s very close to the oral Deaf schools, the children’s hospital, and really anything we’d need. The catch? It is about a 30-45 minute commute for Byron. We really didn’t want to consider an area with more than a 20 minute commute. It really feels like we’re being led to this particular ward in some ways. So, what would you do?

Confusing Hearing Test No Longer So Confusing

Liam got to visit Dr. Peters today. (CJ did, too, but there isn't really any news there. Honestly, no news is many times good news, right?) We discussed his hearing test from Monday that left us a little baffled about the results.

Monday's bone conduction test showed that Liam might only have a mild/moderate hearing loss rather than a severe/profound loss. We weren't sure what to make of that then, but I feel better about it all now. Dr. Peters reminded me that children with Mondini issues (damage to the formation of the cochlea) may sometimes have hearing that ebbs and flows. In his opinion, it's not a question of if Liam will need a cochlear implant, but when. He is far more inclined to believe the three ABR's Liam has already had.

To be honest, I feel MUCH better about this than I thought I would. I think my heart already knew that Liam is Deaf, and my heart loves that. I love that he is precisely who a loving Father in Heaven meant for him to be. Rather than mourn Liam's and CJ's hearing loss, we'd already reframed so much of it in our minds and learned to embrace and build upon it.

So, we are waiting two weeks to see if his ear infection in his left ear will clear up and then we'll see Dr. Peters again. At that point, we can discuss where we go from here. So, I don't really have any big news. Like I said before though, sometimes no news is good news.

Practically Perfect Pulmonology Appointment Today

Liam saw the amazing Dr. Rivera-Sanchez today for his scheduled appointment. You have to understand that we LOVE this doctor for him, and really respect her opinion. I give her a hard time, I think, because I am comfortable taking care of him at home when she would sometimes prefer me to let him be admitted for a night to be sure he's doing okay. As much trouble as I give her, I do love what she does for Liam and Drezden. I love that she listens and really seems interested our needs as a family. As much as we love her, we wouldn't mind it if our sweet boys got to a point where they got to see her for things like Christmas get-togethers or in passing at the grocery store.

Today, we got one step closer to that wish. She was SO IMPRESSED with Liam's progress. His retractions are minimal. His room air sats are normal!!! His cough is almost non-existent. His stamina has increased. By all counts, he appears to be a typical 14 month old baby. We still have a few small things we need to work on, but it's all managable. We are so delighted with his progress as is she. (Now we just need to get her happy with Drezden's progress..and we WILL make that happen).

Byron was asking me last week why it is that we have so many of these challenges in our lives. I think it's because the Lord is blessing us with the opportunity to show Him we can and will endure to the end making our best effort and with high hopes and hopefully minimal complaining. Now, we are being blessed with miracles for our efforts. Liam is pretty ahead of the game for NEHI children. Most of them are around 2 years old before they start considering weening from the oxygen. Did I mention that he's 14 months old and only occasionally uses daytime oxygen?

Yeah. It was a practically perfect pulmonology appointment today.

Baffling, Yet Hopeful (We Think), Hearing Test

Liam had his first soundbooth hearing test today. Trying to do the ABR test, which requires sedation, is really challenging because of his NEHI problems. The goal is to condition him to be responsive in a soundfield situation and bypass the need for sedated ABR testing.

Linda Daniel met us there to work in the booth with him on his testing. Without any hesitation, we got started on his test. As the testing went on, it was very obvious that Liam wasn't hearing much of anything at all. I knew that going in, and it really didn't get me down. Then we moved to the part of the test where we start all over, but with him wearing his hearing aids. With the kind of aids he has, we would expect to see immediate results.

Even with the hearing aids in, we were only seeing about a 60-80db threshold. Not a good thing. On a hunch, Linda suggested that we do the bone hearing test. (I know that's not the correct term for it, but my brain is friend and I can't remember the right word.) They put what looked like a headphone without the foam coverings on him behind the ears.

The idea was that this would put the sound directly into his cochlea, and effectively avoid his entire middle ear. The results? Only a 20-40db hearing loss!!! That's only mild to moderate losses!!!! It would still require him to wear hearing aids, but speech would be much easier for him later.

The truth is that we don't really know what all this means. There are a lot of possible reasons why he was so responsive that don't have a ton to do with his actual hearing, but it's a big question mark right now. We will see Dr. Peters on Wednesday afternoon to determine what we need to do next. It may very well be the bone ABR. (Again, not the right term. I will find the correct vocabulary and come back to replace it later.)

So, that's the the latest news. It's not really real news right now, I guess. But, it is a change in what we thought as recently as this morning, so it's worth reporting.

Great Blog I Hope You'll Look At

I always try to follow the blogs of those who post on my blog entries. I like to learn what I can about my readers. Each one has something interesting inside them that most always teaches me something about me. As I followed the blog link to a recent poster, I found a link she had posted on her blog to another blog.

THIS BLOG was created by a young man named David who is bilaterally implanted and is working on his Eagle Scout Project. The site will ultimately be the project when he completes it. He is building a site where young D/HoH people can share stories and experiences. He is looking for other D/HoH people, parents, teachers, etc. to send him their stories so he can add it to your collection. I happen to know that the majority of my readers fit that description and have amazing things they can add. I hope you'll check it out, add a submission, and maybe create a link to your own blogs to help David out.

Proof That the Only Thing He Can't Do Is Hear

I've always made it my personal mission to point out that the only thing my Deaf children can't do is hear. I guess it's not highly likely that they'll be air traffic controllers either, but who's really counting?

CJ has always surpassed the expectations of those around him. Byron and I learned early on never to assume we knew what he was going to do next. Thing only thing we can absolutely expect from him in the unexpected. He has a long history of wild and crazy antics. From drowning the fish (literally! Who knew that was even possible?!?!?) to finding ways to practically cut off his finger with a butcher knife to making friends with every single person he ever meets to demonstrating a drive to beat the odds like no one we've ever met, CJ has ALWAYS proven us unprepared for anything he has up his sleeve.

A couple of summers ago, he taught himself to read. When Kindergarten started this year, he told his teacher what the difference is between an octagon and a hexagon. The list just goes on and on and on. This week was the tip of the iceburg. Our little CJ, who they told us would likely never speak (Ha! Couldn't have been more wrong there.) got a letter in the mail welcoming him to the gifted and talented program. Once again, he has proven that the ONLY thing he can't do is hear.