a collection of random thoughts and ideas from me, her, and sometimes us
Monthly Archives: December 2015
To get released from the NICU, BBA had to make it six hours without his blood sugar dropping. It was an arduous process, with frustrating setbacks and a new diagnosis we will keep for a while. But he did it. At our endocrine appointment yesterday, we decided it’s time to wean off the medication that is supposedly helping to balance his insulin and glucose.
We knew that we were going to ask the question yesterday but it is still a bit strange to think we can start this process. If we make it through, we will be down to one medication (for his thyroid) which we will be one until at least age two. We have been at a barely palliative dose of the insulin medication for months now and endocrine thinks his system does not need it. The way to find out: reduce the dose by half for two weeks, testing his blood sugar twice a day. If he makes it those two weeks without dropping his blood sugar, we go two more weeks with no medicine testing his blood sugar twice a day. If he makes it those two weeks, we are home free (theoretically) and just have to test if his behavior changes. So, for those of you with the wherewithal, cross your fingers for a while that we make it through.
Next stop, pediatrician at the start of the new year. After that we could have a few months of normalcy without doctors appointments every week. Again, fingers crossed.
Hello again. We have been on an upswing for the past few weeks, just trying to get through to the end of the year. We have had some ups and downs, but are diligently working to figure out how to address the remaining challenges that exist. One to cross of the list: eyes.
We met with the amazing pediatric ophthalmology team at the JHU Wilmer Eye Institute on Wednesday to address some concerns about focusing and overall ability to see. It is remarkable what they are able to do for a FIVE MONTH OLD BABY to assess eyesight, and to make repairs to eye structure at this point to eliminate future issues. The visit we long and arduous, but resulted in amazing news. His eyesight is great. There is no damage to his optic nerve. And the focusing issues we are having are most likely a result of his prematurity and he will grow out of them. High five BBA!
Follow up with endocrine next week and hope for some medication adjustments. Updates on that to follow.