The Ear, Nose and Throat (ENT) doctor examined Riley today and determined that she will have to have a tracheotomy tube put in to help protect her airway since she is unable to do so herself. The trach tube itself is not permanent, but they are uncertain how long Riley will need it for. Also during his exam they found that the muscles controlling Riley's vocal cords are very weak and they are not certain if she will ever be able to speak - which of course makes me think that she is going to be an incredible worship leader because God loves to display His glory by using the least likely!
We also got the results back from a muscular test the neurologist ran known as an EMG. They found some abnormalities in how Riley's muscles communicate with her nerves and her brain. So they now know that it is some sort of neurological muscular problem - but they are still very uncertain as to exactly what is wrong. The ENT's exam today confirmed these results as well. So while the doctors are learning some things about her condition, it is still only a very small piece of the puzzle and they still do not know anything about what is causing all of this.
They are planning a surgery probably in about two weeks to put in the trach tube (for breathing) and the g-tube (for eating). They are also going to take a sample of muscle tissue from her left hamstring for a muscle biopsy and they will take a nerve sample from her left calf muscle for a nerve biopsy.
It would be a lie to say that today was not a tough day - no one wants their child to have to deal with trach tubes and all of this other mess but we still feel very hopeful and blessed. One thing I have been overwhelmed by today is how God's love for us is so extravagant. Not only has He given us the peace and the grace that we need to be strong in this situation but we can clearly see how He has been setting things in motion for years in order to equip and support us during all of this. We know He is going to do incredible things in Riley's life and in His infinite mercy He has given us all the tools that we need during this time like our faith, our family, and an incredible group of friends. Also crazy stuff like the fact that I roomed with one of Riley's physicians over 2 years ago on a missions trip to Peru or that our next door neighboor that just moved in is a nurse in the children's ICU at Wolfson! God is so good.
Please continue to pray for her strength and healing.
Love,
Becca, Josh, Ayden, and Riley
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