Day 554 - Helmet Scan & G-Tube Issues Continues

Thursday, July 7th, 2022

James had a helmet appointment in the morning. At this appointment it was time to do another head scan. Although we don't have any photos of the scan or print outs like other offices typically give she did bring both mom and dad back one at a time to look at the images on her computer. She told us random numbers like "95" and "improved from a 12 to an 8.5". So what we can tell you is that James' head shape is still improving although his fontanelle (soft spot) at the top has now closed. This is expected around 18 months of age, and around 2 years old his head should reach about 90% of its adult size.

These are the numbers we were told:

• CR: 95
• CVAI: 8.5 

[See Image Below] Cephalic ratio is used more so for brachycephaly and involves higher numbers between 75-105. Cranial vault asymmetry (and CVAI) is used more for plagiocephaly and involves lower numbers, between 0 and 20 usually. 8.5 is the degree of severity of plagiocephaly (CVAI) and 95 is the degree of severity for brachycephaly (CR). The higher the CR number generally the wider (and "flatter") baby's head and vice versa where a lower CR means baby's head is very narrow. Cranial vault asymmetry just measures the difference in millimeters between the 2 diagonal measurements. Yes it is very confusing!

Once we got home, Mom called the GI office trying to get a hold of someone to let them know we need to be scheduled with Interventional Radiology (IR) to get his button replaced with the correct size OR we need to come in sooner than our next appointment to be seen. The office staff said they would relay the message to the Doctor. In a prior visit our GI Doctor said that James would grow into the button but that isn't happening. We still have it inflated with 6mls of water (we're supposed to only have 4ml) in the balloon to keep it taut to his skin. It's still sticking out too far and it's been almost 3 months since it was placed!

(Example of another babies head scan)

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com