3 Weeks Later.

As Amber naps, Kyana & Taylor wrestle in the living room and Kurt & I think how grateful we are to be home together. I know you all want to know how Amber is doing but know that life is hectic so you wait for the blog... I will do my best to write new posting every Sunday, even if it's just a few pictures so you can check on Monday. You can always email, call or text but I don't promise I will always be able to respond right away.

From head to toe, this is how Amber is doing:

Neurology - we have an appointment in September, for now we just need to keep up with her physical therapy and see how being at home helps her. There is nothing we can do, just wait.

Opthalmology - Went to LA, her right eye has scar tissue so we need to add dialation drops twice a day and put a patch on her left eye for an hour a day to help exersice the right eye. We are going to try to keep our follow up appointments in Orange with a different doctor until it's time for her lense replacement when she is older. They might prescribe contact lenses should know more soon.

ENT (Ear, Nose and Throat) - We have to keep an eye on her left ear because it might collect fluid, have a follow up appointment in September, but she can hear out of both. Her nose is good but due to the narrow right nostral passage way we also need to keep an eye on it. Swallow therapy was due to start last week, therapist had to go out of town so we are starting on Tuesday this week.

Cardiology - Will keep seeing her once a month. He just switched her medications (decreased) and did some blood work. Potassium seemed high and gluten was very, very low but they felt it was not conclusive since gluten was so low she should have been in a sleep coma. Went in for a quick EKG all is well, next appointment in August.

Endocrinology - Appointment on Monday will probably do more blood work and hopefully find out she doesn't need any hormonal supplements.

GI (Gastro Intestinal) - change her G-tube to a MIC-KEY button, much easier for her to be held without the g-tube hanging down. We plug in the feeding tube into MIC-KEY then unplug when done. She is a little more gassy but we are dealing with it. Her anus still has what they call a "fisher" which is causing her to bleed or have blood in her diapers. It doesn't happen often, we are putting an ointment as a barrier to help it heal. Dr increased her feeding from 75cc to 85cc so from a little over 2 ounces to almost 3 ounces. She eats every 3 hours, no matter what... I forgot how many diapers baby use in a day.

Pediatrician - She will get her first set of vaccines at the end of July.

We had our first family walk on Friday night, she was awake the whole time looking around and taking in all that refresh RSM air. Thank you for all your prayers and good thoughts.