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Thursday, 18 October 2012

Inner Ear and Inner Strength

As some of you know, I have been suspicious of Sivana's inner ears for quite some time, particularly since she was learning how to walk and struggling so much with balance.  I've also noticed her speech developing very differently than all the other kids.  We've been so thankful for sign language as this has been our best means of understanding her.  I've also noticed certain sounds that she does not seem to respond to such as the letter T, S and F... letters typically registered in the higher frequencies.  Even though I try to show her these sounds, she looks at my mouth with confusion and reaches her hand to my lips to "feel" the sound.  That's when I knew something was very different.

So we finally went to see the pediatrician and I asked for a referral to audiology.  Thankfully she took my concerns seriously and Sivana was seen today.

We spent an hour in tests and Sivana did brilliantly.  Different devices hooked to her ears, various speakers used around the room, probes behind and in her ears... she took it all and despite having just turned two, was able to use the methods of testing for age groups 3 and up (said the proud mama!).  Sure enough, by the end of all the tests, all methods showed consistent results that Sivana has mild/moderate hearing loss and will require hearing aids in both of her ears.  Because the hearing loss is in the inner ear, it is permanent. Thankfully, they had a device that showed WHAT Sivana hears so I was able to better understand the severity of her deafness.  

When the technician said mild/moderate, I figured it wasn't too bad, but when she showed me a regular conversation between a man and woman under normal hearing conditions and then under Sivana's conditions, I couldn't hold back the tears...  I could barely understand anything that was said and it was as if I had my hands over my ears.  All those times we thought she was being disobedient... she just couldn't hear us!

The other aspect to this is the fact that the inner ear develops in utero at the same time as kidneys and reproductive organs.  Whatever happened during that gestational stage, it clearly affected her kidney(s) (hence the multidysplastic kidney) and now also her inner ears... I am praying fervently that the Lord safeguards her womb.  

Sivana loves babies more than any other child I have seen!  She carries her own little baby with her just about everywhere she goes.  When I'm nursing, she sits on the couch and "nurses" her baby, too.  Anytime Avalyn is awake, Sivana giggles and stays near her and asks to hold her.  Even at the clinic today, a baby was in her car seat crying and Sivana gasped when she saw the baby and clasped her hands together in excitement and then looked concerned as she realized the baby was crying.

I don't know what the good Lord has in store for our Sivana, but please unite with me in prayer that He bless her womb, whatever that may look like.  Nephrology clinic warned that this was a possibility and that we would begin tests when she is a bit older.  Only time will tell.

The good news, my dear family and friends, is that the technician was greatly impressed with Sivana's ability to communicate given the severity of her hearing loss.  Thank you Signing Time!!!  We are back in four weeks for more tests and fittings for hearing aids.  We pray that the transition to hearing absolutely everything (particularly in this house) is not overwhelming for her.

Her heart murmur is also something the doctor wants to further investigate so we are also being referred to a heart specialist.  I asked the Lord for exceptional children and He gave me exactly that!

Thank you for your support and for uplifting our precious girl in your thoughts and prayers.  I love you all so much.

1 comment:

Anonymous said...

Please know Sivanna is in my prayers as well with you and your family. As I am someone who works with children with special needs and considers oneself very passionate about my career or how I see it my calling, I praise God for how technology is used to better children's lives. My prayer is that through this He will get the glory. You are an amazing Mom. May God continue to keep your passion alive in all you do. :-) Michele Schriemer