Eye Patching

A little over two months ago Cayman saw her eye doctor. Her prescription glasses were not helping to restore the vision loss in her right eye. Orders were written for us to start patching her left eye for three hours a day. By blocking out her vision in her strong eye (the left one) forces her right eye to work and hopefully enabling it to get stronger, reversing the vision loss. If patching is not successful in reaching this goal surgery-talk will come up. Bleh!

Eye patching has been an adjustment in this household.

Cayman hated it strongly in the beginning, who's to blame her. I hated it. Who can blame me.

Once the patch was on, next comes the glasses, which she also hated. Then a few weeks later hearing aids were introduced to her. Oh my goodness! Can I just be honest and tell you that I found myself overwhelmed with emotion from all of this. I slapped a speech onto myself one morning trying to bring reassurance to my soul, "It's not like it's a shunt failure. You can handle this. It's not so bad. Cayman will adjust to it."

It was a fighting routine that I could not let slip between the cracks of everyday life, even though I felt the temptation to. Both Cayman's sight and hearing depended on it. It was not an option not to carry out this routine.

I am convinced that Cayman was convinced I was torturing her everyday though by making her wear this stuff. Again, it's that fine balance as a mother that I feel between stern and gentle.

I would sing her favorite songs {Itsy Bitsy Spider, The Wheels on the Bus, etc.} while I put all this 'stuff' on her each morning. For the most part the songs kept her mind distracted from what I was doing as well as kept those adorable, independent hands too busy to pull all the 'stuff' off.

Now, 5 months later of glasses wearing, 2 months later of eye patch wearing, and a little over a month later of hearing aid wearing, I can say it's all going so much smoother.

Cayman has survived the adjustment to all this 'stuff'. {And so did I}

Hearing Aids

We learned in depth last month that Cayman has a pretty messed up middle and inner ear. The bones in the middle ear are malformed and do not transmit sound well into the inner ear. And once sound does make it through the middle ear, the inner ear is even more malformed, with a part missing that effects both hearing and balance. The sound then travels up the nerve and into the brain. That pathway seems to be in good working order. But once the sound has reached the brain it has to be interpreted still by a brain that is severely malformed itself (and remember the sound that did make it all that way is pretty poor).

I sat there marveling over the doctor's analysis of Cayman's ear anatomy. It was felt shocking to hear. Cayman has carried on showing she understand much of what we say which masked that there ever was a problem with her hearing. The only thing that maybe gave us the slight wondering is her lack of speech development. She does not talk. We don't even hear many "mom's" or "dada's" anymore but the part of her brain that controls speech is not exactly typical either.

Listening to the doctor's overwhelming interpretation of the detailed scan of Cayman's ears and all the malformations it revealed, my head swirled in the terminology. We were getting a quick, crash coarse in ear anatomy it would seem.

I sat there engulfed in a great peace. We are in the midst of another one of God's amazing miracles in our little Cayman. It's remarkable that she can hear at all and the amount of hearing loss that is noted is marked only as mild to moderate. Can you see the miracle in that too?

Cayman was fitted for hearing aids, not a process that she enjoyed. In fact she cried. Poor baby. She just hates her ears being messed with and any progress we had made with the toy otoscope I am afraid was thrown out the window that day. The audiologist injected a putty-like substance into her ears that hardened to the shape of them after a few minutes. They took the mold out and that was used to custom make some well fitting hearing aid molds for Cayman.

And here's the big news: Cayman loves the hearing aids!

A toy otoscope, we don't need that to get her over her ear-touching phobias anymore. It only took her a couple of days to feel comfortable with them and now she sits patiently and calmly while I put them in each morning. She finishes it up with smiles and clapping. She never pulls them out. They have even improved her tolerance in wearing her glasses. Cayman learned quickly that when she pulls her glasses off out pops the hearing aids too. So she leaves those in place now as well. Can you imagine how much easier this has made things for us? No more struggles and fights. Except in eye patching...that's been thrown in the mix of doctor's orders now too, but we'll save that for another day's post.

We have noticed Cayman reacting to quieter sounds since she has gotten the hearing aids. And clinically the tests showed improvement in her range of hearing.

So many glorious things we are experiencing in our little miracle girl.

Peering out the window.

Pointing at a squirrel.

We're still keeping our fingers crossed and praying our insurance will pay for the hearing aids. We have appealed their denial and now we wait to hear from them again. I am told from a lot of different parties to not hold my breath though. Rarely does an insurance company pay for them.


*Sigh*

Simple Statements

baby is about the size of a sweet potato


I'm 18 weeks pregnant today.

Baby moves a lot.

I love it!

***

I'm still sick with a head cold.

But doing a little better.

Cayman is much better.

And Mike is much, much better.

***

Cayman loves her hearing aids.

She didn't even fight me today when I put them in.

And she always leaves them in.

I'm glad.

Makes things easier for everyone.

***

I'm creating a new blog.

It's under construction.

Don't freak out someday when you find this one has moved.

I won't leave you hanging.

I'll provide directions to the new one.

***

Tomorrow is my 2nd trimester ultrasound.

Excited and nervous.

Is it a Girl or a Boy??

Poll says Girl.

We shall see tomorrow.

Hearing Aids and 17 weeks

There is a lot going on this week and things are getting exciting.

Cayman is getting her hearing aids today. Our insurance still does not want to pay for it but U of M is giving us loaner aids while we fight it out. Isn't that nice? Cayman's needs don't have to wait just because of their stubbornness. I will do an upcoming post about her new devices and all that was found regarding Cayman's ears on a CT scan. And I will also post about her eyes too and how that check up went. She's been a very busy little girl.

On the pregnancy front, I am 17 weeks now. Baby has been moving a lot more. Yesterday I felt the tiny kicks at least seven times. I wouldn't call it a "flutter" or "tickling" as some will say about their experiences. Instead I would describe it to feel more like the faintest drum beat or a tiny bubble popping, if that makes any sense.

I am one week away from my anatomy ultrasound. I am beyond excited for this appointment :). Mike too. Seriously, we are! There's still a spot deep in the pit of my stomach that feels nervous about it. But right now I am excited and I am thankful for that. It has been my goal to make this pregnancy enjoyable and not get caught up in the whirl wind of worries. The fears are still there but they do not rob the happiness we feel over expecting a baby again. There is a freedom I feel in not letting that worry bind me and overtake my joy. I can not accomplish that on my own. It really does take the joy of the Lord to be my strength. And the fact that I am excited for the upcoming ultrasound next week reveals how mighty that truth is because I am a natural worrier. That part comes so easy to me.

Here's the picture for the week {from BabyCenter.com}.

About Cayman's Hearing

Before surgery.

We are home from the hospital.

Our little Cayman now has tubes in her ears. There was definite fluid they drained but it is not enough to help her hearing alone. It turns out there is a much deeper issue than just the fluid in her ears. The CT scan and ABR hearing test both revealed a hearing loss.

There's more.

Cayman's inner ear is severely malformed and typically over time the hearing loss gets worse with this kind of condition.

Cayman loves music. She responds to songs we sing and shows we watch. Our hearts feel a little sting of sadness to think that one day she might not be able to enjoy those things in the same way.

Plus it greatly effects her balance and ability in walking. It's not that she will never be able to walk but it will take her some time to get to that milestone. Then you throw in her brain malformation with that and well...she just has some pretty big challenges to conquer.

Our hearts - as her parents - feel sort of heavy knowing there is more added to the list of struggles for Cayman.

But there was a piece of gladness we gripped at as we heard the doctor explain Cayman's hearing condition - It seems it's a miracle that she hears as well as she does.

In fact, for so long she's had us all puzzled whether there was even a problem or not. She responds so well to the things we say.

She will be getting hearing aids. I am looking forward to seeing if they bring any changes for Cayman. It makes me smile imagining her learning to talk and having a conversation with me someday. What fun that would be. But if not, that's okay too. I am deeply in love with my little miracle girl, just as she is. Cayman has us completely warmed with such joy.