Progress

Emma was feeling a little better today. When my Mum and I arrived to see her today she was happily watching her mobile and kicking her legs about! We've kept her pretty swaddled but it's been warm in there this week so she has had more freedom and it's good for her to stretch. We also got her arms out and she was waving them around!

It is likely the infection was a common staph bacteria, but a pain nonetheless! It should respond to the antibiotics.

As you know, Emma is a cutie - those eyes suck you in like a tractor beam! What is less clear from the picture is she has a little chin, or you might say a recessed jaw. The medical term is microagnathia. Because of this she has a narrow airway. Coupled with a slightly large tongue, she is having trouble keeping the airway open. It could be the tongue or just weakness causing the block.

Tomorrow (finally!!) she is scheduled for a broncoscopy. She is an add-on, so they just fit her in at a moments notice. They will have to intubate her and put her on a ventilator. Hopefully this time she will come right off it without problem - prayer request #1!

The results should give us an answer about what the problem is - prayer request #2, and then the doctors can decide a course of action - prayer request #3.

We have heard the idea of a tongue-lip adhesion - sticking her tongue to her lip to prevent it falling back if that is the case. However, she will still have a recessed chin. I have been reading about a more invasive procedure where the jaw is gradually pulled forward. This may seem more severe, but in the long-term will help Emma to look more normal (something that will otherwise be tough with the Moebius condition).

We need great wisdom about selecting the options the doctors give us. They all have short and long-term effects. The nurse practitioner said today, we are past life and death concerns now (God-willing!), so we need to try and help her for the future. As a woman I want to help her accept herself for how God made her, special, but as her mother I also want to minimize the emotional trauma that being different can cause.

As I understand it, she will never blink, smile or frown. She'll likely have to wear a hat or sunglasses when outside because she can't squint, and may well have a speech impediment due to her high palate and immobility of her top lip. She will likely experience many dental problems.

(While I'm on the subject, it kills me that my smile and teeth are my best feature and my girl got most of my features but these! Just doesn't seem right!)

I hope she will not have to also deal with the chin issue

In all things we trust God and we have faith that he will answer these prayers, in his own way. Stay tuned to see how!!