Appointment days like today are always tiring. But man, it is so worth it when all the news is good news.
We were hoping to say goodbye to one specialist today. Technically, we did, because she is leaving Iowa city. However, Kiran will still need to be followed by endocrinology to assess pituitary gland function. We watch this due to his optic nerve hypoplasia (small optic nerve). So far, all of his labs have come back normal, and we have no concerns. Hoping to hear the same in a few days about the labs he had drawn today. We thought we might get to be done with this specialist because his brain MRI showed the pituitary gland is structurally normal, but we learned today that isn’t an accurate indicator of proper function. So, we remain monitored – but we get to go to a year here, too, instead of every six months.
Kiran’s echo went really well, and we now know to always request Roger. We have had him twice as our echo tech, with someone else in between. Roger is a calming presence and has abundant patience. It made a huge difference with how at ease Kiran was, and he was a rockstar throughout. Roger also takes more time to explain what we are seeing than any other (save one) tech we have ever had.
Cardiology. Not only did we get our year card, but Dr R feels with what he has seen, Kiran may be years away from surgery. Like – when Arif said he was hoping for second or third grade, Dr R said he was hoping for even longer than that! The initial age we were given as a possibility was five, so I will take third grade, hands down! Of course, this isn’t set in stone by any means – things can and do change – but wow, what great news about the stability of Kiran’s heart function!
Getting labs drawn always breaks my heart, and today was no different. We requested the j-tip, which is lidocaine administered without a needle. It is basically injected through the skin using a forceful puff of air – best explanation I can give. It’s fairly new at the hospital, but Kiran has had it one time before, when putting an IV in for his MRI. It seems to work well for him, numbing the skin before having blood taken. He still cried and sweat a bit – poor turkey – that continues to be the hardest thing. Kiran is not a big crier, so it tugs hard at the heartstrings when he does.
Kiran’s feet looked really good, and we asked the orthopedic surgeon if he had any concerns about his hips. Clinically, he felt his hips had good range of motion and flexibility, and he had no concerns. This dates back to the developmental pediatrician at the CDD telling us three months ago that she had concerns about one of his hips possibly being out of socket or misaligned somehow. Given both his physical therapists and now his orthopedist have checked him out and do not share this concern, we feel we do not need to follow up with a hip x-ray. Always good to knock one concern off the list.
All in all, what an exciting day! We have been so lucky to not have any medical concerns with Kiran for a good length of time now, and it seems that continues to be the trend. So we just keep trucking along, doing what we do.
We are back in Iowa city, at the Center for Disabilities and Development, later this month for Kiran’s cognitive evaluation. In September, we come twice: once for his regular feeding clinic follow-up and once for genetic counseling and testing.
In October, we meet with the neurologist. This will be our first appointment with one, due to the results of his brain MRI. A big reason we were hopeful to be done with one speciality (endocrinology), but no such luck. So, we just add another specialist onto his list of many.
In November, we follow up with genetics. This appointment may change due to the testing schedule. December is genetic eye doctor. And January is another visit to the CDD for the Neurodevelopmental Clinic.
It feels like a lot right now. May they all bring good news – and more knowledge – like today.