Sarah is doing just fine. We haven't seen any signs that she may have CPT II (this doesn't mean she doesn't have it, because kids can seem fine yet still have it - I say this just to keep myself in reality). She has been sleeping most of the night and waking up happy.
Today she signed that she wanted to eat please and I walked with her to the fridge and asked her what she wanted to eat. She pointed to the 2% milk grated cheese and got excited. I let her have some. We haven't really ever given her much grated cheese before. It was fun to give her what she asked for and not feel like I might be doing something detrimental to her.
Sometime in the next week or so we will need to go in to the lab to get Some of Sarah's blood drawn to check her carnitine levels to make sure they are in the normal range still.
Praise God for this time and that Sarah is healthy.
My daughter, Sarah, was born in July of 2008. The Newborn Screening for our state flagged her as possibly having a genetic disorder. Her genetic metabolic doctor diagnosed her with "Presumptive" CPT II, Carnitine Palmitoyltransferase II Deficiency. This blog documents some of our experiences with this part of our life journey.
About Me
- Lisa
- I always claimed that having a child and motherhood would be my biggest test of faith. I had no idea. Then we added foster parenting to the mix. If anything, I've learned how selfish I really am.
Disclaimer
You should always consult a medical professional about the care of yourself or a loved one. I am not a medical professional. This blog is just a journal of one family's experience.
The Purpose of This Blog
This blog was set up to document my journey in the hopes that other parents may be encouraged, may feel some sort of peace in knowing that someone else is struggling with similar emotions and hardships, or that they may simply learn something from our experience.
This blog was started when Sarah was 6 months old. I began writing all my memories from her birth until the current time as best as I could remember.
After I began writing these posts, I found that the act of journeling helped me to better accept and understand my emotions and struggles. Please know that these posts are intended to document my experience. I'm writing all that I remember to help myself cope and remember what I have learned along the way.
This blog was started when Sarah was 6 months old. I began writing all my memories from her birth until the current time as best as I could remember.
After I began writing these posts, I found that the act of journeling helped me to better accept and understand my emotions and struggles. Please know that these posts are intended to document my experience. I'm writing all that I remember to help myself cope and remember what I have learned along the way.
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