Smiles, Peace and Clarity

Our little Maggie is starting to smile, and it is just the best. There is nothing like seeing happiness on the face of someone you love; especially someone so small, and new.

Her smiles are healing. They have been a great consolation to me while we have the day in day out before surgery. With Apert there are delays in milestones for some kids and not for others. Each day it’s hard not to compare her to our other kids. In all, it’s completely unhelpful because each kid is so different, with Apert or not. I have been just trying to watch and look for cues of her growth and movement forward, and so far everyday she is moving in a good direction of recognizing our voices, faces and responding in turn. Her sweetest new habit is cooing at us when we aren’t giving her our full attention.

Last week we had an ENT appointment with local doctors. With Apert syndrome, the structure of the skull effects so many other issues namely ear, nose and throat. We discovered during the appointment that Maggie does indeed have a cleft palate. It’s called submucous or a hidden cleft. Hence why they didn’t catch it at first. It isn’t impacting her eating now but when we move to a bottle she might have a bit of difficulty. It will also likely pose a hurdle in speech and making certain sounds, we will just have to wait and see. They also found that she has some fluid behind her ear drums which dampens the conduction of sound and leaves potential for ear infections. We will go back in a couple months to have her hearing checked again and then navigate whether she will need tubes. None of this was surprising, we had kind of expected something along these lines. We are grateful they caught these things now rather than having frustrations later when she wasn’t responding to sounds or having trouble with speaking.

Tomorrow we go to see another team. I would love your prayers for clarity and unity. Carlos and I are having to make these decisions together and it isn’t like any other decision we have ever made. It is about Maggie, it’s about our family, it’s about us, it’s about our future and there aren’t just facts, there are emotions and anxieties. So many places to step on each other’s toes.

If you could also throw up prayers for a smooth transition to a bottle, I would really appreciate it!