Good morning everyone. My Princess had a great night. She slept like a little Angel 😃 I am so happy to be able to say that. We started back all her chest PT and breathing treatments and she sounds so much better today. The doctor told me yesterday, with Sophie since she has breathing problems that I have to wean albuterol, I cannot just stop it when she sounds better. He is the first person to tell me that in 2 years, so I never knew. I felt bad about it, like I was the reason she got sick again, but then had to remind myself that I really didnt know. It seems like a doctor would have told me that before now. At least now I know. He actually wanted to put her back in the hospital yesyerday, but I felt that she would be better off at home. There is too much flu and RSV at the hospital and I have everything I need at home for her. Now she has her own private dr./ nurse 😃 I know Im not either, but I play one in real life everyday 😉 Please continue to help us rsise awareness for NKH today by sharing Sophies Story. We have gotten so many new followers her lately and we want to welcome all of you. Thank you for you support. ALONE we are RARE...TOGETHER we are STRONG. Fight for a cure for NKH. We hope that you all have a great day. Love, Sophie and Mommy 💝💝
Posted on: Sat, 10 Jan 2015 17:03:16 +0000
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