We’ve had a string of good news lately…Matthew’s improved eating post-surgery and the improved hearing. We’ve been on a high!
But Matthew is making sure we don’t become complacent. His appetite has decreased lately and we have suspected that he had an ear infection. At the doctor’s office this morning (our new pediatrician), we were given news we expected … yep, double ear infection, and news we didn’t expect. The doctor thinks Matthew has “metopic synostosis” which is a type of craniosynostosis.
“Craniosynostosis is a term that refers to the early closing of one or more of the sutures of an infant's head. The skull is normally composed of bones which are separated by sutures.
As an infant's brain grows, open sutures allow the skull to expand and develop a relatively normal head shape. If one or more of the sutures has closed early, it causes the skull to expand in the direction of the open sutures. This can result in an abnormal head shape. In severe cases, this condition can also cause increased pressure on the growing brain.” (source: http://www.kidsplastsurg.com/skull.cfm)
We’ve been referred to a craniofacial surgeon and have an appointment for a formal diagnosis and discussion about treatment options early September. We are thankful there is a fix for this uniqueness and pray for the best outcome for our sweet baby Matthew. Thank you for the continued prayers for Matthew and for us as we deal with this latest surprise.
Hi, I just wanted to let you know that our daughter was in a helmet when she was younger, not for craniosynostosis, but for other issues, and it really wasn't an issue. The casting, fittings, and wear weren't too bad. The biggest issue with the casting was that she got hungry, and that it was kind of odd to see her entire face covered with a stocking. She was a little more fussy after each new fitting, as the pressures shifted and pushed on one of her eyes, but otherwise, she did fine adjusting to it. We had a few people ask us questions about it, but most people were very nice. We never decorated Erin's, because quite frankly we were too busy, too lazy, and not that artistic. However, we found that white goes with everything, draws less attention, and I think my husband secretly liked that she looked like Dr. Evil. ;-) If I can answer any questions you have about the DOC band/helmet, please don't hesitate to contact me. -christine
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