That was then and this is now.

*Isla had her cleft lip surgery at 3 months old. Dr. Rothkopf of UMASS did an amazing job. I was terrified that the face I had fallen in love with would look different to me but in really he ended up making it the face that my mind had seen all along.

*Isla has had CATscans done on her head that showed us that her ear canal does not connect all the way through. The bones in her inner ear are small and malformed. She will be getting a third hearing test in January to confirm that her right ear is 100%. Any decisions on treatment will be made at that point.

*Isla's outer ear is still cupped and under developed. We taped it for many months with hopes that the small amount of cartilage that she has in her ear would harden upright but no such luck. She will have a surgery to reform her ear at about 3 years old.

*Isla's head is bulged out on one side and flat in the back which happened over time. This is called positional plagiocephaly (hers is specifically brachicephaly but I feel that plagiocephaly may be a little more commonly known). It was caused by torticolis which is a tightening of the muscles in her neck which led to her head favoring one position. Starting this Thursday she will be the proud owner of a beautiful light purple butterfly helmet. This is called helmet therapy and will hopefully round out the shape of her head. To be honest I am feeling very sad at the thought of this because I feel like it is just one more thing on top of everything else. I know helmets are common and I know it is not a big deal but it still just makes me sad. On the other hand, I know Isla will rock that light purple butterfly helmet like only she can!

*Isla has a condition called hemi-facial microsomia. Her face is under developed on one side. I have noticed this from very early on, probably from the hours that I sat and stared at her during my maternity leave! As time has gone by it has begun to be more noticeable to others and we FINALLY received this diagnosis. Her face will either grow at the same rate on each side from this point on or the right side could continue to develop more than the left. Surgery can be done to correct this but not until she is older and at that it will be her choice to do so or not.

*Isla recently had x-rays done which showed and incomplete or fused upper vertebrae. This is our most recent news so I can't clarify much more than that. I will of course update as I find out more.

*So far Goldenhar Syndrome is looking like the closest match to the constellation of defects that Isla shows. She is missing one key component which has to do with her eyes so we will be seeing the eye doctor very soon for sure. She does not have this diagnosis yet, I just thought I would mention it because my instinct tells me that all these pieces go together.

Isla is my rainbow. Her crooked smile is my love. She is a tough and brave baby and I have learned so much from her in these 9 months. She amazes me every day.