Two weeks ago we had Grace’s follow-up rapid MRI & appointment with her neurosurgeon. Grace’s first MRI was back in February and it was quite the process. The doctors wanted to ensure they got a very detailed and accurate picture of her brain and spinal cord. After ruling out a tethered spinal cord and getting great baseline pictures, this MRI, our second data point, was only a rapid MRI. I was so grateful Grace didn’t need to go under anesthesia again and that the process would be very quick.
I wasn’t sure what to expect given COVID and the hospital’s restrictions. We were so grateful they allowed both of us in the MRI room with Grace. After checking in, getting our temperature checked, and getting new masks, they quickly brought us back to the MRI room. I was so curious to see how they’d keep an infant from moving. The sweet technician swaddled Gracie girl, gave her some ear plugs and a cute helmet, and sent her into the machine. The top of the helmet has a mirror that allows us to see Grace and Grace to see us. Although she was NOT happy with being swaddled or the loud noise of the machine, she powered through and the whole process lasted maybe 10 minutes.
Then came the waiting…We knew our neurosurgeon would be calling us later that day with the results. I think I got my hopes up too much assuming she would tell us not only the results but our next steps too. What I love about Grace’s doctor is that she truly believes you treat the patient, not the scan. When she called us later that day she explained that the fluid in Grace’s brain had stayed the same/increased slightly, but that she wanted to see her in person the following Monday. We got access to the radiology report online the next day and read that Grace’s Bifrontal Index had increased from 62% to 69%. Waiting over the weekend was not easy, but we found comfort in knowing we’d have answers and an accurate head measurement coming soon.
Monday morning Spencer took Grace down to Denver for her appointment. Because of COVID only one parent was allowed to attend, and Spencer is generally better at asking the right questions. The neurosurgeon was happy to see that Grace still presents as a healthy and happy 8 month old baby. While we learned our measurements of Grace’s head have been inaccurate, we were thrilled to learn that her head had grown, but not too much. Additionally, she explained that her interpretation of the images showed that Grace’s Bifrontal Index had increased by only one percentage point (63% from 62%). She recommended that given Grace’s presentation and gross motor improvement, she still did not want to place a shunt. We scheduled a 3 month follow-up appointment with the potential of another MRI in 6 months. Overall we were thrilled!
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