Jul 24th - We had a family meeting on Thursday with all the therapists and specialists. Much to our disappointment they did not feel that Kyle's feeding issues would improve significant enough to warrant an extended stay in the inpatient setting. They claimed that because of Kyle's prematurity and brain injuries, he is developmentally delayed which is a big part of his feeding issues. He scored at a 4 months level for speech, gross motor, and fine motor skills. They said until he had more core strength to sit up and can support himself better (he's doing it now but he hasn't "mastered it") which also builds better lateral tongue movements and rolling the tongue into different positions to chew and eat properly, more gut maturity (they claimed his vomiting and the need to reduce his feeds as the day goes on because he tends to vomit more as the day goes on is a sign of poor gut function which will take time to mature), and more hand-eye coordination as his vision improves, his feeding issues cannot be resolved. While a lot of it did make sense we did not necessarily agree with their assessment.
They wanted to send us home on Tuesday and to continue to work on all of his issues on an outpatient basis but we requested to stay until we have get all the outpatient and additional in-home services coordinated so that we can have a smooth transition when we go home. They agreed so we are staying here for two more weeks.
He had a bad feeding session on Saturday morning where the weekend speech therapist was being too forceful with the finger feeding and we promptly asked for a replacement for the afternoon session. I was so afraid that all the work we've done so far to try to overcome his oral aversion was negated by that one session. But he seemed to be doing much better when we tried ourselves later so hopefully that one bad session did not have lingering effects.
On the up side Kyle is improving greatly on his motor skills. He is now bearing weight on his legs much better with the help of the stander and knee immobilizers. Even when he doesn't have them on and is not in his stander he is able to be on his feet with his legs straight and his back straight. He was never able to do that before at home. He is now also able to sit all the way up from his boppy pillow. He did it for the first time yesterday and today he is able to sit straight up within 2 seconds.
I am of course still hopeful that he will be able to take at least some food orally in the next two weeks before we go home.
They wanted to send us home on Tuesday and to continue to work on all of his issues on an outpatient basis but we requested to stay until we have get all the outpatient and additional in-home services coordinated so that we can have a smooth transition when we go home. They agreed so we are staying here for two more weeks.
He had a bad feeding session on Saturday morning where the weekend speech therapist was being too forceful with the finger feeding and we promptly asked for a replacement for the afternoon session. I was so afraid that all the work we've done so far to try to overcome his oral aversion was negated by that one session. But he seemed to be doing much better when we tried ourselves later so hopefully that one bad session did not have lingering effects.
On the up side Kyle is improving greatly on his motor skills. He is now bearing weight on his legs much better with the help of the stander and knee immobilizers. Even when he doesn't have them on and is not in his stander he is able to be on his feet with his legs straight and his back straight. He was never able to do that before at home. He is now also able to sit all the way up from his boppy pillow. He did it for the first time yesterday and today he is able to sit straight up within 2 seconds.
I am of course still hopeful that he will be able to take at least some food orally in the next two weeks before we go home.
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| Kyle standing up |
Kyle sitting up by himself
