My husband, Alice and I took a day trip to DC...did a little sight seeing on the way in, some accidentally as we took wrong turns and ran into road work but we made it to the hospital with an hour to spare. Just enough time to grab lunch in the hospital cafeteria and take Alice in the hospital Atrium/lobby where I wished I could have taken her last time...but she was stuck in the hospital bed.
|I knew she would love them!|
|They added new balloons since we were there in July for her surgery|
So Dr Magge measured her head and took pictures. He asked about how she was doing developmentally and how we thought she looked. I told him about my concerns about Alice's eyes recently and that I had them checked. I have heard alot about babies with unicoronal (left or right coronal) having eye problems. He explained to me that most of those cases are babies that had CVR (reconstructive skull surgery). There are studies to support that babies that have the endoscopic surgery don't seem to be as affected since releasing the suture that is fused helps with the asymmetry and reduces the chances of eye problems. We told him we noticed very early on how quickly her nose and mouth asymmetry was corrected. He then asked us how we think her forehead/eyebrow looks. We told him that it without a doubt it has improved a great deal...but it was still flat looking. We knew going into this endoscopic surgery that her results may not be as good as a baby that had the procedure done at 3 months old but we were willing to risk the cosmetic aspect of it to avoid reconstructive skull surgery. He said he could feel that the bone was starting to fill back in where he did the craniectemy but that it wouldn't affect her progress. The plan is to keep Alice in her helmet until she is 18 months old, although he will followup and keep an eye on her and could possibly extend it depending on how's she is doing. As Alice continues growing...her brain will push her skull outward and continue to push her affected side outward. With time, her skull will not appear as flat and her brow bone will eventually come out, even though it is recessed now. There isn't a medical need to do further surgery on Alice...it would only be cosmetic at this point, unless something changes.We won't be considering another surgery unless Dr Magge thinks she NEEDS it. The reason her head has not been growing dramatically is just because she is in the lower percentile for growth...her head is in the 25th percentile. She has a small head but it is growing gradually just like the rest of her. We call her our little runt :)