I Wish

I wish this blog post was going to be about something fun we did this week, or about a house update .. instead its another medical post. They seem to keep coming and coming with no end in sight.

Pacen's hands and feet have been getting increasingly purple and legs/arms have been mottled. When we press on his toes and they turn white, they don't return to color until about 8 seconds later. I took photos of his feet to do a comparison photo for the doctor. We see Dr. H tomorrow to ease our worries about it. He was a bit grey around his mouth last night during dinner, but how do you determine if he needs medical attention when he's happy, crawling, playing, eating, drinking his sippy and laughing at us?

I put a call into the Albuquerque GI 4 times this week and today, the nurse finally called me back. Since he reacted to the almond milk and sesame in the hummus, we need to watch him close with the coconut milk. We are in a damned if you do, damned if you don't situation with what he can have. She told us not to give him any new food at all until we can get to the Allergist (10 January) and she wants him to see the cardiologist before he gets his MRI (which I already had scheduled for 4 Dec and cancelled) because of the murmur he has being a worry. His cardiology appt is 9 Jan, both that and the allergist is in Albuquerque. I will call for the MRI appt after we get cleared from the cardiologist.

She wants to trial him on dairy for 2 weeks and see if his constipation changes. Right now, he is still getting 2 caps of miralax per day to keep him going. If he gets constipated with the 8 oz of cows milk, then she is going to put him on an amino acid based formula like Elacare Jr or Neocate Jr for 6 months and clear his system of food, then try and reintroduce it later on.

I think that is all that we talked about. My note pad from talking to her on the phone is messy, but I think I covered everything. She is going to do some research and find one that can be a prescription formula so it is paid for by Tricare, otherwise it is around $40 for a small can of formula.