We’ve been meeting a lot of ologists recently. It comes with the territory when you adopt kiddos with medical needs, and these first few months will be the biggest push of doctor appointments as well get everyone up to speed.
I had hoped to get Angelina into the spina bifida clinic at the children’s hospital only 2 hours away, that way we could get all the ologists together with everyone writing scripts, sending out orders, evals, reviews, assessments, referrals, xrays, mri’s, ultrasounds, and brainstorming done in one marathon day. Unfortunately, the clinic was booked till October and there are just too many medical unknowns for Angelina to safely wait that long. Although we will be at the spina bifida clinic in October, we’ve had a flurry of appointments around the state to check off all the most urgent issues.
This week we only had one ologist to see. Next week we have two and the following week we have at least 2 more. This ologist was recommended by the spina bifida clinic, he has oodles of experience in the specific condition I was concerned about, and he works with the spina bifida clinic so that would be a nice consistency of care aspect. It took a while to work out an appointment date and location but in the end he was the closest dr we’ve seen yet!
In anticipation of meeting this ologist, I talked with our family doc to get some blood work already sent to the labs to have on file by the time this appointment came around. Spina bifida affects everyone in their own way, sometimes it is fatal at birth or soon after, sometimes people live their whole lives with only minor lower body weakness, and there whole range in between. Obviously since Angelina is still with us, her sb at birth was not fatal, however there were potential organs that could be in critical condition due to the lack of medical care provided by the institutions, and those would not necessarily come with obvious signs.
The ologist came in, introduced himself, and then listed to Angelina’s story. It is so nice when an ologist is able to simply sit and listen. When I ran out of things to say, he opened the computer screen, pulled up the lab work results, and launched into an explanation of his field, the broad spectrum of spina bifida, potential surgeries, diet and lifestyle. It was my turn to sit and listen and I tried to be as perceptive and receptive as he had been. The lab work shows that Angelina is not in any organ failure, he has ordered an xray and ultrasound as a precaution, but oh my goodness what a relief to hear him say that Angelina does not need xyz immediately to save her life!
In October when we see him again he may recommend more invasive options, but for now these are his orders: bond, attach, heal, take bubble baths, drink smoothies, play at the splash pad, dig in the dirt, be a family.
On the way home we stopped for smoothies (that’s become a tradition already) and I mulled over all the information the ologist had shared during our hour appointment. It is truly a miracle that Angelina is as healthy as she is, sometimes it feels like she is bursting with health and life through every pore. The coming months and years probably hold multiple surgeries, therapies, and protocols, but for now we are going to focus on the recommendations from this ologist and live life to the fullest.