Beloved family & friends (those known and unknown),
Many of you are parents. Therefore you know the pain of witnessing helplessly your own child's suffering. It is deep, it is solemn, it is humbling. But how does one describe being witness to their child rising above that suffering to rejoice in life? Well, you know me... I am never short on words, so here's my attempt at describing watching our darling Sivana discover the difference in what her God-given ears can hear with the help of some "purple friends".
Sivana's purple hearing aids have opened her to a whole new world! The molds fill the outer ear cavity and the devices themselves loop over the ears. Both the molds and hearing aids are Sivana's favourite colour... Purple.
When the audiologist put them in her ear, Sivana was tolerant (as the audiologist has stuck many different devices in her ears for all the tests performed so this was nothing out of the ordinary). Sivana was sitting on my lap when the audiologist turned the hearing aids on. She then spoke to me and Sivana immediately whipped her head up to look at the lady in surprise. I laughed and she immediately whipped her head around to look at me with just as much surprise. I asked her "Sivana, can you hear mommy?" to which she immediately replied with awe, "yeah!" I signed the following while speaking: "Sivana... Purple friends help your ears to hear. Do you like purple friends?" Again she replied "YEAH!!"
These last few days, she has been singing, playing her iPod game called Starfall which has all the alphabet and their phonemic sound and she has been choosing the letters she couldn't hear before and playing them over and over again.
I caught her placing her hand over her mouth to "feel" the "t" sound and she delighted in finally hearing it... Finally understanding the sounds I was making when I'd put her hand to my mouth when she wasn't understanding me.
She is adjusting to hearing herself speak but doing so well! Even the sound of her footsteps seems to delight her and she stomps around the house. When morning comes and I hold up her hearing aids, she laughs and runs to me saying "yeah... Pupo fend... Elp ea-uh"
Yes, my darling girl, purple friends help your ears...
I love that she hears her name. I love that when I whispered "Mommy loves you" by her ear, that she actually heard me! Such a simple thing but as a parent, you know how much you want your children to KNOW you love them, not just by action but by the comfort of your voice, too.
I thank God almighty for His guidance, for a gut instinct and a pediatrician who listened. For a brilliant little girl who fights for life with her one kidney and her special ears!
In addition to audiology, we are being referred to SMD (society for Manitobans with disabilities), Ears-Nose-Throat Specialist, and Genetics. Perhaps we can get a better idea of WHY and exactly WHAT is going on.
For her heart murmur, we see a cardiologist in January.
For her one kidney, we were at Nephrology in mid-December and her blood pressure readings these last few months are in the 50th percentile so they are happy. She has grown well and her blood and urine samples came back looking good. Her one kidney is offering 99.9% overall kidney function! We praise our heavenly Father for this blessing. We also celebrate the fact that we don't have to return to nephrology for a whole year! At which point they'll do another ultrasound of the kidney.
Thank you for uniting with us in prayer. We cherish our babies so much and while my heart aches some days at the challenges my babies seem to face, I rejoice at their strength and love for life.
I love you all so much and thank you for being there.