We spent the day at UK clinic again today with Athan. We saw endocrinology, ophthalmology, and cardiology. Despite being a full day, complete with the ever-dreaded blood draw to wrap it up, it all went pretty well.
Endo: Based on some lab results, we may get to decrease his thyroid medicine a little. Otherwise, everything is going well. We may be able to space out his Cortef to 3 times a day instead of 4, watching his sugars for a while to make sure they hold steady during the switch.
Cardio: He is (surprise, surprise) still underweight, but addressing that issue was much more cooperative and less threatening this time around. We are going to do our best to pack on some pounds, of course. Now that his reflux, cough, and constipation are gone, we can increasing feeding frequency and add some fortified bottles back in to try and plump him up. Still, Dr. K was pleased with how Athan looks. We repeated his EKG and ECHO today, and there was not much change in either. Also, no change in meds for now.
As far as heart surgery goes, Dr. K said growth is more important than getting to the surgery quickly. As long as Athan is growing well, the surgery can wait. At least it can wait up to (but probably not past) his first birthday.
Ophtho: One of his eyes may be turning inward a bit, but it is really too soon to tell. Dr. Napier suggested a couple of things we can do (like putting a patch over one eye at a time while he is awake to make sure he is using both eyes equally), but she didn't feel strongly that we should do it right away. Mostly, we're still in a wait-and-see mode about his eyes. So much of his ability to track depends on head control, also, and some of his visual inconsistencies may be do to problems with his low muscle tone. Physical therapy with Laurie will show us just how much that is influencing his tracking.
Morgan spent the day with Jason, Hannah, and Margo again. And they washed our dishes. And they fixed us dinner. It is humbling to keep living on the receiving end of so many acts of service. The community of people around us has shown compassion with stamina, and we remain so very thankful.
Endo: Based on some lab results, we may get to decrease his thyroid medicine a little. Otherwise, everything is going well. We may be able to space out his Cortef to 3 times a day instead of 4, watching his sugars for a while to make sure they hold steady during the switch.
Cardio: He is (surprise, surprise) still underweight, but addressing that issue was much more cooperative and less threatening this time around. We are going to do our best to pack on some pounds, of course. Now that his reflux, cough, and constipation are gone, we can increasing feeding frequency and add some fortified bottles back in to try and plump him up. Still, Dr. K was pleased with how Athan looks. We repeated his EKG and ECHO today, and there was not much change in either. Also, no change in meds for now.
As far as heart surgery goes, Dr. K said growth is more important than getting to the surgery quickly. As long as Athan is growing well, the surgery can wait. At least it can wait up to (but probably not past) his first birthday.
Ophtho: One of his eyes may be turning inward a bit, but it is really too soon to tell. Dr. Napier suggested a couple of things we can do (like putting a patch over one eye at a time while he is awake to make sure he is using both eyes equally), but she didn't feel strongly that we should do it right away. Mostly, we're still in a wait-and-see mode about his eyes. So much of his ability to track depends on head control, also, and some of his visual inconsistencies may be do to problems with his low muscle tone. Physical therapy with Laurie will show us just how much that is influencing his tracking.
Morgan spent the day with Jason, Hannah, and Margo again. And they washed our dishes. And they fixed us dinner. It is humbling to keep living on the receiving end of so many acts of service. The community of people around us has shown compassion with stamina, and we remain so very thankful.
1 comment:
oh....there you are :)
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