My dear darling boy has bottom teeth that are like very sharp pointy spikes, just like Sophia's were. He, like his sister, has a deep groove carved into the underside of his tongue, which sometimes bleeds. He needs to have his teeth filed, as Sophia did, which they cannot do here. This morning Ambrose, who I discovered is teething, bled for a few hours. It came out his mouth and nose. I suctioned some out his trach and brown blood came out when I vented his G-tube. It was so upsetting to watch him bleed and know it hurt and there really wasn't much that could be done. He got some Tylenol and clonazepam and fortunately it stopped. It is the less complicated issues, such as a raw diaper rash and bleeding tongue that can be the most troubling to me because they seem to be the most painful. With all the advances in medicine and technology, is there no way to heal a diaper rash?
Great news x 2:
1. There's talk of letting us go home on Monday
2. Great nurse practitioner has managed to coordinate our getting Ambrose to the audiology dept. tomorrow morning to get his hearing aids at long last.
My name is Ambrose James Brown. I am a very special little boy. My late sister, and personal guardian angel, Sophia and I have CDG-1d, which causes us to have many disabilities but it does not define who we are. I am sweet, loveable, adventurous, active, cuddly, strong and brave, and am the apple of my parent's eyes.