Our Fight against Gaucher's Disease type 2 or 3
Today was a very busy day for my little girl. Last night, she was sedated all through the night on chloral hydrate. At least she got some rest, I guess, and we didn’t have to worry about agitation. This morning, she woke up and was still very groggy and sedated looking. I was so thrilled […]
[Continue reading...]
Hannah is back in the hospital. She has been here since Friday morning. She had a rough night with pain the night before again. She looked constipated, and it seemed like not much came out with the enema. The next morning, as we were packing up to go to her Cerezyme treatment, she was […]
[Continue reading...]Yes, Lion King is one of my favorite movies… Hannah was released from the hospital a couple of days ago. It turns out she didn’t have pneumonia after all, but she had trachiitis, atelectasis, and constipation. The irony is that Daddy and I thought that is why Hannah was in so much pain. We […]
[Continue reading...]Here I am sitting in a dark IMCU (intermediate care) room in the hospital with Hannah. She made it 14 months without a hospitalization admittance, which is amazing considering her disease process. Diagnosis: Bilateral pneumonia. Same thing that initially brought her into the hospital last year and ended up being 6 weeks of hell. […]
[Continue reading...]Yesterday we registered our little miss Hannah for school, officially! It was really exciting because I kept thinking “Wow, all three of my kids are in this school!” I never thought this would happen. Hannah also had a very special one-on-one meet-n-greet with her new special ed teacher, Ms. T, and her class assistant. The […]
[Continue reading...]Hannah is doing better than she was a few days ago. We haven’t seen a fever in a couple of days, and she is not spitting up anymore (perhaps it wasn’t reflux related after all?) Also, the hospital lab called me yesterday to tell me that her trach culture grew out nothing out of the […]
[Continue reading...]
Latest Comments