Our Inspired Journey

There are a couple things that have been on my heart today and as I stewed over them, the Lord reminded me of the community of people who have said they are praying for us as I continue to share with you the journey God has us on. If you are one of them, this is for you! Thank you in advance for approaching God with these concerns...He asks us to come to Him with anything so here's what I have today...

Cole
As I said in my last entry, we were told last week that Cole has a part in his inner ear that is larger than it should be. I asked more questions in our appointment yesterday and found that he has what is called Enlarged Vestibular Aqueduct Syndrome in his right ear. It's very interesting and I'd encourage you to google it if you want more details, but what I can conclude from our doctors and the Internet, is that we now have even more reason for him to receive cochlear implants now. EVA (just an abbreviation) is a malformation of the aqueduct in Cole's inner ear, causing his hearing loss in that ear. Some children born with this syndrome start out hearing and then progressively lose their hearing over the course of their life. Since Cole began with such severe hearing loss, we can conclude that there is nothing surgically that can be done to correct this malformity...cochlear implants are the best route for him to gain hearing and speech. His left ear is still a mystery and the hearing loss on this side is probably due to nerves that were not formed correctly inside his cochlea which we could never see to tell for sure. With this news, we're moving forward, full steam ahead with implantation but please pray that insurance kinks are worked out and approval goes through without a hitch so we can stay on our current timeline. Cole also needs to stay healthy until his surgery date for the doctor to be able to operate successfully. Now that our temperatures are down to the 30's and 40's for our daytime highs, runny noses are becoming easier to get! We wear our snow coats everywhere now so we can all stay healthy before Cole's surgery! He is just getting over an ear infection and we're praying for the fluid in his ears to completely go away so there are no stops on the 11th :)

Ryder
An interesting fact about EVA is that it is often times genetic. John and I will eventually be tested to see if we carry a recessive gene causing this syndrome (the geneticist here is backed up right now and we won't be able to see her for a year!) At our appointment yesterday, Jean, (our WONDERFUL audiologist) asked if they could test Ryder's ears. I of course agreed, and so Ryder will have his first hearing test tomorrow. After watching from the other side of the glass in the hearing booth for so long, he's very excited to be the one sitting in the chair this time! I have to admit that my heart skips a beat thinking about the possibility of Ryder losing his hearing. I know that nothing has been determined yet and he may be free of this syndrome, but because he has grown up to this point free of this challenge, everything in me wants to protect him from it. Cole is as happy as can be ans he'll never know what it means to hear with his natural ears. Ryder, on the other had, does hear well, and the thought of him changing is heartbreaking for me as a mother. Ryder has, in the last month or so, begun asking "what?" a lot after I say something, but it's usually when I'm saying something fast or talking to him from the front seat of the car while he's in the back. It really could just be a 3 year old trying to take in language as he's still developing it too!!! But these kids of things get you thinking, you know! Lord, keep my eyes on You through it all...the author and perfecter of my faith and my children.

Cora
I love writing her name! With all the talk of genetic causes for hearing loss, of course our little girl has been on my mind as well. I am fully confident in the Lord's plan for us and knowing He reveals things in His time and when it is best for us to deal with them it always gets me thinking! I'm one who can never wait for surprises to be unveiled! I like to be the first to know! So not knowing about our genetic makeup, we don't know if she's more susceptible to hearing loss or not at this point. Just pray that we be open for God's plan for her life, whatever it entails.

At my last visit with my midwife, Cora was facing up. Her head is down and in position, but she still needs to turn around so her eyes are looking at my back. She says this is one reason why I feel her so much right now! Her little hands and feet are constantly pushing on my belly! Though cute, I want her and I to be most comfortable for this birth, so pray she rolls over soon! At 32 weeks we still have some time, and now that I know, I'm doing all kinds of fun exercises each night to roll her little body over! I actually got to feel her head (my midwife showed me how when she was determining her position) and she's adorable already! :)

Thank you for your prayers and I can't say enough, how thankful I am to know you are praying for us all!!!