I just spoke with Dr. L’s office and the PEX is actually scheduled for Nov 3rd. We have our ICU appt on Nov. 2nd. I feel like I don’t have a lot of faith in this though since we already got bumped once. The scheduling person I am working with told me our insurance might get denied. I think she must be having a bad day because she said that she has only had insurance denied one time and it was for this week’s IVIG patient. This was not news that I needed to hear since we have already been delayed once.
I felt like telling her that we would sell our house to pay the $60,000 for the PEX as long as they would take us on Nov 2. A woke up today at 3:45 for the day. It is very hard to function in this house right now. And if John and I are feeling this way, A has to be 100 times worse. At 5:00 am she told me she wanted to sleep but couldn’t. That made me very sad for her. I was quite concerned that she wouldn’t be able to go to preschool but somehow she did. All morning I expected them to call me to come get her but she made it through.
On a different note: Another mom who has a child with similar issues pointed out to me that she thinks A might have sensitivities to milk and possibly gluten. The reason for this is because A craves and demands milk like it is a drug. But the most tell tale sign is her belly. It is distended and is what led us to our very first blood work looking for allergies. We did Celiac testing on A and found out only that she is allergic to eggs. Nothing else showed up. But it doesn’t mean that she might not have an intolerance for other things. So, on Monday, we removed milk from her diet. She isn’t happy about it but the whole thing is going better than I was expecting. We have tried to replace her milk with goat milk. A was not impressed. I don’t really blame her. I hope over time she will be able to try different milks and then when she is healed from the PEX, maybe we can go back to milk.