Sarah had a hospitalization last winter due to her difficulty with coughing from the RSV virus. She was seen by an ENT and a pulmonoligist while we were there to assess. It has been determined that Sarah has something called Paradoxical Vocal Cord Motion. What this means is that when she has an upper respiratory virus and needs to cough, but instead of her vocal cords opening so she can take another breath, they close so she cannot get any air in. It is frightening to watch and it is very stressful for her. Getting her on prednisone seems to help, as does oxygen after a coughing spell to help her settle down. I keep that at home now, just in case.
Another development is that since we are new to the DC area, it was suggested that she see a geneticist here. Last week was our appointment and the geneticist would like to to genome sequencing to see if we can finally discover the cause of all her issues. We shall see how much testing her insurance will cover. Blood was drawn in anticipation of their approval.
Let's see, what else? I have put in for a new wheelchair for her. It's been 5 years. I would like exactly what she has now, it has worked so well and she has not grown. It has just started to lose some nuts and bolts.
She still remains tiny at 74 pounds and 4'10". Her shoe size is a toddler 12. She's been the same size for many years. I can still lift her by myself, Yay!
The following pictures are: Sarah and her niece, Elliot. Sarah at one of the Smithsonian Museums. Sarah waiting for a doctor appt. Sarah on her 20th birthday.
