Meeting Milestones and More!

It has been quite some time since I have last written an update.  There has been a lot exciting new things going on since I last updated in November. Since we have some plans to go back to Cincinnati coming up in April, I thought this would be the perfect time for a post. 

We now have a full on walker on our hands, or should I say runner.  He is moving nonstop and keeping us all super busy.  He isn’t the most coordinated walker yet, but we are finally able to trust him to fall without hitting his head (most of the time).  I know that it is so exciting any time a baby hits that next milestone, but it is a little different when you have a kid like Rhett that has to work so hard to hit the next natural step.  It feels like such an accomplishment after the months of therapy and practice to see him finally confident and ready to take off on his own.  I not only feel so proud of his accomplishment, but it is also another reminder that Rhett is going to be just fine.  We are all going to be just fine in this crazy, hectic, joyful life.

Right after Thanksgiving, on our way home from our last trip to Cincinnati, Rhett made his first ever vocalization.  He had been doing grunts and squeaks for a while, but this was the first ever open mouth sound.  Since then I would say that Rhett has finally found his voice.  He is loud, doing different pitches, and also making different sounds.  He has not said any words yet, but I know that will be coming.  I have a feeling that once he starts talking, he might not ever stop.  I’m sure he has a ton to say.  Hearing the sound of your child’s voice is so beautiful.  Whether it is a cry, a squeal, or a giggle, it is music to my ears.  One of the hardest parts of having the trach was missing out on hearing Rhett for the first two years of his life.  He has once again hit another milestone that reassures me that we are all going to be okay.

Some more exciting news is that we are trying out our first ever tube wean.  The plan is to cut his tube feeds little by little in hopes that he will eat more and more by mouth.  He still has a risk of aspiration, so we are taking this slow with the help of our wonderful Speech Therapist and Occupational Therapist.  He is currently getting 70% of his nutrition by his feeding tube, and he is eating about an ounce at every meal time.  He is still on purees so we are hoping to work more towards chewing and soft solids.  Just a few months ago it was a struggle to get Rhett to eat more than just tastes of baby food.  Now he willingly opens his mouth for bites, and is enjoying eating.  It is so exciting to see a kid go from refusing to open his mouth for food to being so interested in trying new things.  I hope that he continues to improve his oral skills so that one day soon he will no longer need the feeding tube.  For now I will rejoice in the fact that he is eating part of his nutrients by mouth because there was a time not too long ago that I was not sure we would ever get here.  I should know better by now than to ever doubt this child and his abilities.  I need to remember that he is and will continue to hit these milestones in his own time.

We will be returning to Cincinnati at the first of April, right after Easter.  It never fails for us to travel around a holiday.  The timing for this trip is actually perfect since Dale will be off work for spring break.  It is always nice when we can get trips scheduled where he does not have to take off of work.  We are taking a break from looking at his airway, and are going a different direction for this trip.  Rhett will have several evaluations and tests done to see if his left ear may be a candidate for a cochlear implant.  We will have consults with ENT and audiology, and he will also meet with a speech therapist and behavioral pediatrician to assess his receptive communication skills.  We have decided that if the doctors think they can do a cochlear implant and it would be beneficial for Rhett, then we will go that route.  We do not take this decision lightly since this is the first surgery we have a choice in.  We have spent a lot of time in prayer, and trust that God is leading us in the right direction.  While we are in Cincinnati we will also have follow up appointments with both urology and ophthalmology.  Please pray that all these appointments will go well, and that we will learn some valuable information for allowing Rhett to be the best he can be. 

As always,  I so appreciate all of your love, support, and prayers through our journey with Rhett.  Rhett is a living miracle and  a perfect picture of God’s work and love.  God has seen us through so much, and I know He will continue to see us through all the obstacles and challenges that lie ahead of us in our future.  Rhett has the sweetest personality, and loves everyone he meets.  To know Rhett is to know love and happiness.  Although many things are a challenge for him, you would never know it because he is such a happy kid.  Rhett has taught me so many valuable lessons about patience and perseverance, and I continue to learn so much from him every single day.  I hope that when you see Rhett and hear our story, you will know that all the glory goes to God.  Without our loving Heavenly Father, we would not be where we are today.