Tj has been working very hard in therapy. He walked the entire therapy hallway with no breaks. The out patient therapy hallway is double the size of the usual hall he has been walking. YAY!! TJ’S Appetite has been getting better so his feeding hours have went from 11p to noon, than 11p to 10am, 11p to 9, then 11p to 7am.
As of Friday Tj was able to come off his feeds completely to see if he will eat more. The doctors want to be sure he will not start to lose weight. All the changes with his feeds should have caused Tjs blood sugars to be all over but Tjs blood sugar levels have constantly been low to urgently low and some normal ranges. We have had to lower his insulin doses multiple times. His endocrine doctor is so excited because this means Tjs islet cells are starting to wake up. This is such a good sign that he will be able to eventually come off of his insulin. We are so happy because Tj is still only allowed to use his right hand for blood sugars and with his constant lows, they have been getting pretty beat up. Tj has been having some increased pain with eating so his doctors started a daily spasm medication and switched another pain medication all together. This has been such a huge deal because he was getting so uncomfortable. Now he is being so silly again.Within the last week his oxygen levels have been going down in 80 to low 90’s so we started oxygen again at night.His lungs at the bottom are starting to sound dimnished( little air passing through). This is why Tj is on the vent at night, he doesn’t take deep enough breaths to get oxygen to his body. He has low tone CP and your lungs are a muscle and has been givi g him some trouble but God!. Good news surgery has cleared Tj to start sleeping with his bi pap vent and he can use all his airway clearing machines. So no more manual conpresions and the cough assist is back in business to keep our little guy going!! Next week we talk about when we can head home. TJ has been meeting and surpassing each goal that is set for him. Saying he is a fighter is an understatement. He is not just fighting he is in the fight winning!!!He is so ready to get moving around and get home to his bestie little sis,rocket, family and friends!