It's been a whole month since my last blog and of course so much has happened! First of all Audrey was seen by a different geneticist who came up with the same diagnosis. This was relieving, at least we know what's wrong with her, and sad. a part of me secretly hoped he would say, "She does not have this horrible, unpredictable disease, with no cure, take this pill and she will be all better!" Obviously there was only a slim chance this would happen but it was still a hope. So we've moved on. This is her diagnosis and we will continue on in our path of acceptance.
The week after we saw the new doctor was a rough one. She went back to sleeping >22 hours and crying hysterically every evening, partly out of exhaustion and also from low glucose. This was just how she was in July before she was in the hospital. After 2 months of doing better we were scared she was all the sudden doing worse again! Then her lab results came back and her levels were still low so we increased her medications. Within 3 days we had our happy girl back! What an amazing difference, there is no question how much these meds help her.
She continues on doing well with the exception of her latest problem...constipation! I know it sounds crazy but in our house we are all quite focused on whether or not Audrey has "gone." She is on 3 different meds to help her go and occasionally needs a suppository on top of that. We haven't had to do the enema yet but I know it is in her future. Her poor belly gets so hard and round she has to lean back to breathe and she won't eat anything. So that's her biggest problem currently.
Other than that life continues on. Jacob is doing well in school and has his school play next week. He is playing Linus in Charlie Brown's Christmas play so we are looking forward to that. Him and his dad have been trying to do as many boyscout activities as possible though it is challenging because our free time is filled with appointments and therapies for Audrey. My work continues to be busy and crazy as we are attempting to change around roles, procedures and duties to improve efficiency. Change is a good thing! Audrey was finally accepted into the daycare at the hospital which has been mostly good. It's nice to have her there at work with me. It has been a challenge for her because she is only allowed a two hour nap at school so we'll see how she continues to adjust to that.
So that's our update! Today is Audrey's great grandfather's birthday and he is 91. We are all so glad he is still around to see his great grandchildren grow. It is also Veterans day. So Happy Birthday Opa and Happy Veterans day!