Turning The Corner

Sloane has turned the corner. She does not have a fever anymore and is more alert. Her little body is exhausted and her coloring is one that reminds me of her first few days in the NICU.

Today was another day of do nothing. There are many more of those in our future I think. Sloane hasnt been able to be home and freely play in months because of the renovation and I think it is just what she needs these next few days.

Dr. Rahbar's office emailed me back. Their response was as it always is clear and progressive. It is a good things I am not employed by them. I would upset the apple cart. Basically, he wants Sloane to have thickened liquids until she has recovered from this bout with pneumonia and then he wants to resume liquids in their natural form again. We understand his logic or rather my hubby does. I would keep Sloane's liquids thickened for the rest of her life to not see her so sick again. It is clear though that Dr. Rahbar isnt going to pull the plug after one setback. He isnt that kind of doctor. We, also, do not want Sloane to be frequently sick. We need a bit more insight.

So I followed up with another email to get some clarification. We have started to wonder if this is what other LC parents deal with and if we have just been lucky? Sloane has remained pneumonia free since 1 month old. Is that rare for a LC child with a level 2 cleft?

I will speak for myself although I do think my hubby feels the same.....this weekend was an eye opening experience. We have been living with having a child with a birth defect, but we have not been living the life of a parent who has an ill child. Sloane has not been ill. She has been healthy and always full of life. Watching her this weekend, made me realize the difference. I do not know how parents of chronically ill children do it. It was and is painful to watch her so lethargic and out of sorts. I have seen Sloane sick before, but she was an infant with a personality and affect we hadn't met yet. Now to know my Sarah Bernheardt, Drama Queen, Rock Star, Extroverted Actress and to see her so sick is something I am not interested in again.