A Busy Week Ahead

It has taken me a lot longer than I had planned on to write a post to update on what has been going on, but life sure is busy with two.  Rhett has done well with becoming a big brother, and is becoming more and more interested in Brooks.  He still doesn’t want much to do with him, but he will randomly come look at him or show him one of his many lions.  Brooks loves watching his big bro run around and play.  I just know they will be best buds one of these days.

Rhett has had a busy, but great summer.  He had the opportunity to attend a summer camp this year where he was able to learn and play.  He spent his days playing with others, learning to eat with his peers at a table instead of a highchair, focusing on his sensory needs, and how to follow classroom routines. 

Rhett has also continued to improve tremendously with his eating skills.  We began feeding therapy with a new speech therapist this past January, and he has made the most gains in such a short amount of time that he has ever made.  She has been wonderful, and I know she is a huge part of his growth along with Rhett’s hard work.  His chewing skills have improved so much that she has given us her blessing to try more solids.  He currently prefers crunchy solids, but we are working on soft solids as well.  We plan to offer him some sort of solid at most meals before finishing up with a puree of some sort.  We are currently only using his tube for medicine, water, and one feeding at night.  As he increases with solids and calorie intake, we will drop his nightly tube feed.  We will say goodbye to that g-tube one of these days.  Not too long ago I wondered if he would ever learn how to eat, and now he is mostly an oral eater.  He continues to amaze me with how far he has come.

At the beginning of the summer he began a new therapy called Auditory Verbal Therapy.  This is a specialized speech therapy for children with hearing loss.  We are currently working on his response to sound without any visual input.  The goal is for him to respond to sounds that he hears consistently so that we have a better understanding of what he is hearing.  I believe he can hear more than what he has been responding to.  His therapist explained that he has been such a visual learner for so long that he has almost tuned out sound since that isn’t what he has been relying on.  We are hoping that this will help bridge the gap so that he can maybe begin to say words.  We are by no means cutting out sign language.  Sign language is his mode of communication, but I would like to give him all the options for communication.  We will follow Rhett’s lead on what mode of communication he prefers.  If he learns to speak and chooses speech as his preferred method of communication, that would be great.  But if he prefers sign, that is great too.  We will just have to continue to learn sign language along with him.  As his parents, we feel we need to bring all the options to him so that he can choose what works best for himself. 

Next week we will head back to Cincinnati with a full schedule.  He has many follow up appointments throughout the week along with a surgery on Thursday.  Rhett will follow up with urology about the kidney procedure that was done in March.  In May Rhett was able to come off the antibiotic that he was on to prevent any infection that could be caused by kidney reflux, and so far he has not had any infection.  Since he is doing fine without the medicine, we are hoping this is a good indication that the procedure was successful.  Rhett will also have a follow up with the behavior pediatrician.  She will assess Rhett and his development, and help us navigate how we can best help Rhett to reach his full potential.  Rhett will also see the audiologist about his Cochlear Implant.  This is the audiologist that helped to program his CI at the beginning, and he will help us to know if his CI is at an appropriate setting.  If it is not, he will give us a new set of programs to work through to hopefully allow Rhett to have access to the most sound he can possibly have.  Rhett will follow up with the ophthalmologist to monitor his strabismus and to make sure his eyesight continues to be where it should be.  Finally, on Thursday, he will once again go under anesthesia for scopes, an ABR, and a lingual tonsillectomy.  We are hoping that the scopes will show no inflammation in his airway which means the many medicines he is on is working to keep the inflammation away.  We are also hoping that the ABR  will give us the same results that we received in March.  In March the ABR showed that his hearing in his right ear had gotten worse.  I am hoping that his hearing does not continue to regress in that ear.  We are removing his lingual tonsils to take away some of the crowding that Rhett has in his upper airway.  If we were to leave the tonsils, then there would be a big possibility that he would have obstructive sleep apnea if he did not have the trach.  He will need these out to get the trach out one day.  This surgery is one step closer for him to be able to get the trach removed.  Once he has the scopes and surgery, we will have a better idea of what his next steps will be for his airway.

Please pray for Rhett and our family as we travel this week.  This will be Brooks’ first trip to Cincinnati, and I honestly have lost count as to what trip we are on for Rhett.  Pray for all of his appointments to go well.  Pray for his procedures on Thursday.  Please pray that we will have good results, and that the surgery goes smoothly and is successful.  Pray that Rhett will not be in too much pain after surgery, and that we will be able to keep his pain managed.  He is such a trooper for all that he has to go through, and he is constantly the happiest kid I know.  Pray that Rhett will heal quickly with no post-op complications.  We love you and thank you for your prayers and taking the time to read this.  I will update again once we have the information from this coming week and are back home.

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