Thursday, January 28, 2016

The Next Steps

Hi Everyone!

When Colin was discharged from the hospital, he began seeing three in-home therapists, Occupational Therapy, Physical Therapy, and Speech Therapy. He has been discharged from Speech Therapy and will soon be discharged from Physical Therapy since he is age appropriate.  He will also soon graduate from BPD Clinic since all of his needs are now met through Aerodigestive clinic, he's graduated from Neurology, and has made huge strides in other areas as well.  I am so amazed at his progress, he has come so far from that hospital bed.  Now we are anticipating decannulation sometime in the near future, Lord willing.  On February 5th, he will have hernia surgery and while he is under, his ENT doctor will take a look at his airway.  The last time she did a bronchoscopy, she cut out a big granuloma and advised us that his tracheamalacia was much improved.  We are hoping that all looks well and that we can then schedule a sleep study which will determine if the trach is ready to be removed.  We're not sure the timeline yet, but hoping sooner rather than later.  We hope, then, that the stoma will close on it's own, if it does not, he will have to have it surgically closed.

At the end of February, we will travel to a feeding clinic in Richmond, Virginia for a consultation.  Colin will then be added to a wait list in either Richmond or Evansville, IN to be part of an intensive feeding clinic where he will be fed 4 times a day, 5 days a week.  That is our next big hurdle, getting Colin to eat by mouth.  Once he is taking all of his feeds and fluids by mouth and gaining weight, he can then get his g-tube out, but that won't be for a while!

 Someone doesn't enjoy OT

Other than that, Colin is your typical two year old.  He is full of energy, strong-willed, and desperately wants to be independent.  He no longer wants me to carry him, but yells to walk until I put him down, he has his own taste in music, and knows how to navigate a tablet or smartphone better than several adults that I know.  He loves to dance and sing and hates to wear clothes.  He for sure has a temper and that leads to time-outs, which don't really phase him because he's a total stinker.

Colin selfie

Thank you all again for your thoughts and prayers.  I'm told often how much people enjoy these updates, so thanks for reading!  I'll update again after his surgery.

No comments:

Post a Comment