We are still waiting on some results for Demi. We are meeting with different doctors in different areas of expertise to be sure no stone is left unturned.
We met with a neurologist here in town and discussed her MRI and she would like to have a CT scan done Friday for Demi. Hopefully this will give us a little more information.
I’m meeting with another doctor tomorrow to discuss Demi’s case and a potential for lab work we can draw. As of now we are set to see a geneticist in DECEMBER!! But this momma is already working on making that happen much sooner.
Next month we will head to Beaumont to meet with an ophthalmologist that performs procedures on children and infants to help with their vision. We are hopeful he can help assist in making Demi’s vision better. This is the doctor from Houston I have mentioned going to see.
I was supposed to get some lab results today but unfortunately found out there was a communication error between us and St. Jude. I sent an email expressing my disappointment and sure enough the specialist we saw there called me just an hour later to express his apologies. My frustration was because I could have ran these labs here in town and had them resulted by today had I known they were not drawn in Memphis. Of course this means another blood draw for Demi but I remind myself that it’s all in efforts to better her care.
I have done some homework on the neurologist in Boston and I plan to make a call to them very soon to potentially set up a visit for Demi.
In the meantime, I have a meeting with early steps, I have contacted or had a friend contact all of the therapist we plan to use for Demi. I also have contacts with some other outreaches to assist us with her visual needs. So many people have reached out to me in efforts to connect me to people who can help. It’s insane how many avenues of information I have. I’m so grateful.
I cannot begin to explain the love we feel from all the prayers, the prepared dinners, groceries in the pantry, fridge and freezer, our yard being taken care of and my house being cleaned. I’m just so overwhelmed with the support system around us. Brandon and I have been through countless challenges and our support system has always been so amazing, but I’m still in awe over all of you.
Thank you all again for the continued prayers as we fight for Demi. I feel a little aggressive in a sense but not apologetic for working so hard for her. I feel blessed to have been raised by a woman who was so tough and never took anything less than what she expected. I owe her a big thank you for that part of my personality. Continued prayers for Demi, medical answers for her as well, but most importantly Gods healing hands over her body. We are in the midst of medical answers but firmly believe Gods will is much bigger for Demi.