Fill #5

Even though I updated this blog not that long ago, I feel as though a lot has happened in a short period of time! When we picked Evan up from daycare on Friday, one of his girlfriends (who is 4) said his bubble looked smaller. I had noticed the few days before and felt the same way, but assumed it just morphed due to gravity. I ran my hand across the top of the bubble, and quickly noticed there was an area that felt empty. Kind of hard to explain but hopefully pictures below show it better. Jeff and I were immediately concerned that there was a leak. We are adding so much saline each week, so this bubble should only continue to get bigger and protrude more, right?

When we got home, we put the numbing cream on his port per our usual Friday routine to begin the filling process. In the meantime, we contacted one of the nurses in Chicago to voice our concern and get the green light to proceed with another fill. I sent her a picture so she could see the bubble, and she quickly eased our nerves by letting us know this was not an issue. The bubble went into his head folded, and the seemingly empty top part of the bubble is simply a result of the bubble unfolding, gravity, stretched skin, and the fact that we were due for a fill.

Jeff and I were freaking out and were still a bit skeptical. We proceeded with his fill, and were able to get in the most saline yet, 23 cc’s. That puts us at 119 cc’s total, which is about 48% of our goal. Hard to believe we are only half way there as I cannot imagine a bubble 2x as big, but at the same time, this process has absolutely flown by! Evan’s Aunt Hallie and Uncle Alex came by to keep him occupied and he once again was awesome, not making one flinch. We emailed the nurses and Dr. Bauer a picture of his bubble, which yet again by late Friday, had an area on the top that looked unfilled. Dr. Bauer immediately responded that we were fine, and to keep up the good work.

What do you think, does the bubble look smaller or are Jeff and I just going crazy!!??




Indent pre-fill




Post fill... Does it look bigger (TWSS)
















Wearing an adult sized hat












Conflicted