Friday, August 12, 2016

Always a Beauty to me

I have mentioned in previous posts, how the longer you wait to treat unicoronal (left or right) craniosynostosis, the more the facial features are affected...causing more asymmetry and eye problems, in particular by waiting to have CVR. Which is why being diagnosed and treated in a timely manor is so important. Six months of age is the cut off for endoscopic surgery. I feel very strongly about treating craniosynostosis as early as possible, to prevent even more medical problems.

Alice has done amazingly well. She was 5 and a half months old when she had surgery. She did so well with her helmet, without that, she would not have the results she has today. I can't stress enough how important it is to keep that helmet on 23 hours a day, and the longer the baby wears it, the better. Most doctors recommend wearing it up to a year, which I think is VERY important to the end result. Alice wore hers until she was 18 months old, she wore it for almost exactly a year.

3 years post op and we are starting to see a few minor issues. At Alice's followup at the ophthalmologist, they observed her left eye drifting. This only seems to happen when she 'stares off into space' or becomes tired. We followup in 6 months, but if she starts drifting more often, then we need to call them. I can just hope and pray that it doesn't get worse. I can only imagine how much more her eye would have been affected if we had waited 6 more months to have the larger surgery. Babies with coronal, in particular, should be followed by a ophthalmologist. I hate to think of her having a surgery for her eye muscle, but if she does, I know it's a much smaller procedure than her skull surgery and she will be ok. Will keep you updated.

Coronal babies will never have perfectly symmetrical faces (really, who does?) but I'm ok with that, and it doesn't matter which surgery they get. I know by treating her sooner rather than later (vs 1 year of age, as recommended for CVR) not only gave her room for her brain to grow but it also helped to improve her facial asymmetry from getting even worse. As soon as Alice had the surgery and they opened her skull up how it was supposed to be, her facial asymmetry started improving right away.

Alice was dealt a card in life that I wish she hadn't been, but it has taught me so much. Not only have I learned about a condition that I never heard of. I also learned how strong, brave and resilient these cranio babies are and just how beautiful they truly are... scars, imperfections and all.

Alice will always be a 'Beauty' to me. Which is fitting because she is really loving Princess Belle these days and insists on sleeping in her dress and crown.

She follows up with her neurosurgeon in September, we are very eager to hear what he has to say...

Always a Beauty to me