Another post about Claire.

I wanted to post this again because there has been a little confusion. Claire does NOT have PKU. But the PKU Newborn Screen they do at birth tests for PKU and a number of metabolic disorders. In this screen they found an abnormality and that is why we have had so many tests done. As of now we think it is just a vitamin B-12 deficiency. So we are now starting to give her daily B-12 injections until her body (hopefully) starts to make it on its own. She has no symptoms, and never has had any (I think that's why it has been so hard on me! She seems like a perfectly healthy baby). We will go in for periodic testing to see where her MMA levels are at and if they don't lower by the beginning of next week then we have to conclude that the B-12 deficiency isn't the issue and begin hunting for something else that is causing the concerns.


With that being said, today is day 2 of her home injections. Yesterday a nurse came out and taught me everything I need to know. She gave me a month's supply of syringes, needles, and medicine and enough alcohol swabs and sterile gloves to last me the rest of my life. I practiced giving a shot to an orange. I gave a shot to my daughter and hated every second of it.

Today, I was on my own. While she slept I prepped the syringe, swabbed her leg, and poked her. It was hard enough to scare her but not hard enough to break the skin and I chickened out. Then I was shaking for the next half-hour until Adrian was available to help. So what did I do? I taught Adrian everything I know. He is wonderful and offered to do the hard stuff. I held her, he poked her, and then I loved on her for a long time. *sigh* I've been told it gets easier the more you do it.

The side-effects of the medicine are minimal: The liquid itself is a bright pink which makes her urine a pinkish-orange color...(and makes it smell kind of metallic-y). It also seems to give her a lot more energy and makes it hard for her to relax and calm down. So my usually sleepy baby has turned into a awake, fussy, and want to be held baby after her shot. But as side-effects go, that's pretty manageable. Now we're just praying for her body to respond positively to these injections so all can be well again.