Happy Sunday everyone! Lainee has been doing very well this weekend! Her appetite has been better and she has been very playful! I spoke with the dermatology specialist on Friday, and they are still waiting on the results of the fungal culture. Once they find out what it is, they will have to dive in to the scientific literature and see what has worked for others in the past for treatment. That makes us a little bit nervous and from what she said about her past cases, it sounds like this will be a longer and more complicated journey than we originally thought.
At this point, Lainee’s autoimmune disorders are stable. Her red blood cells are fluctuating, but we believe it is because of the infections. Lainee has been diagnosed with a fungal infection and secondary bacteria infection. The infection is opportunistic, and has developed due to Lainee’s suppressed immune system. The drugs to treat the fungal infection are rare and in special form, liquid, because she is so tiny. Just one week of this medication costs $120 (on top of the costs for the other 8 medications she is on; Mycopehnelate, Cerenia, Plavix, Omeprazole, Atopica (cyclosporine), Prednisone, Carafate, Hydroxyzine). In addition to the cost of seeing the dermatology specialist, we think that treating the infections alone would be about $400 a week. We are hoping that the fungal infection will be treated in a month!
For me, making food is kind of a neutralizer. Or maybe, normalizer is a better way to say that. In stressful situations it makes me feel like I am doing the following:
- being productive
- providing something healthy and nourishing for someone
- showing my family and friends I love them