It's hard for me to imagine that 3 weeks into this program Noah would be sitting in his chair, drinking an average of 2oz and eating up to 1/2 of baby food per 45 min feeding session. Looking back to week 1 when they were simply working on opening his mouth for an open spoon and getting him used to their touch, he truly has made so much progress in 3 weeks time. Seeing that his weight gain is still an issue, they have now been mixing some powdered formula into this food for an extra boost as well as the introduction to rice cereal mixed with applesauce. He has a hard time with the cereal and tends to gag with each bite. We think that it is just thicker and tends to coat his tongue giving him an uncomfortable sensation. Even though he gags, he is still not refusing the bites. He is still getting his nightly 10hour continuous feeds, but I have only been averaging 1 bolus a day this week because he is eating and drinking the rest! An average of about 360 calories a day by mouth!Amazing! We will just continue to work on strengthening exercises and chewing and keep trying to increase his volume that he is taking. Once he picks up the volume, we can start chipping away at the continuous feeds. He is still having episodes of pretty bad retching after some, but not all, of his sessions. Dr Clawson strongly feels that his stomach is unusually acidic and could be the cause of his tubes going bad so quickly. She thinks the stomach acid is simply eating away at the balloons. We may be increasing the Prevacid again.
He has made major improvements with his speech. Since we have been here and they began the stretches and facial exercises, his vocabulary has easily doubled from around 25 words to 50! Today, he actually called me "Mom", not the usual "Maaaaaaa" I would get from him, but very clearly, "Mom". Music to my ears!
We enjoyed a great visit from Granny Ogle yesterday! She was kind enough to drive here from Ohio and spend some time with us as well as observe Noah's therapy sessions for the day. We also had a great dinner with friends Dave and Earline that live just outside of Evansville. Thank you so much for your kindness, we had a great time! Noah actually drank almost 2oz of water from a cup and straw and repeatedly asked me for bites of soup and bread. He sat in his chair for the entire meal without protest and had no episodes of anxiety when anyone talked to him. He has come such a long way in such a short time!
We are so lucky to have such an awesome support system of friends and family. I just can't say it enough! We have many, many blessings to be thankful for!