Today, Xander had two appointments. The first was a physical to clear Xander to be sedated for his MRI on Tuesday. We managed to get that appointment on fairly short notice but it was originally scheduled with our doctor's partner. Then our doc called on Tuesday to check in with us and I mentioned it, so he made room for us on his schedule and moved us. Tiny blessing.
So we did our appointment with Dr. P. He is an amazing health care provider and we greatly respect him. He "gets" the dynamic of our family size. He has 6 children. He "gets" our homeschooling. His wife homeschools their children. He is amazingly easy to talk to and we've never felt judged.
We sort of vented this morning about the merry go round of appointments we've been through. He was very empathetic and said to feel free to call him if there is anything that he can do. He also told us he was praying for us. We greatly appreciated that.
Then we went ate lunch and went to the allergists office. It was a nightmare. Xander screamed the entire time. Dr. G asked a ton of questions to get a thorough medical history and try to fit puzzle pieces together.
We did some skin testing. Xander raged the entire 20 minutes between the testing and the doctor checking the results. He was not supposed to scratch at his back and this drove him absolutely insane. And after all of that, nothing came back. This was incredibly frustrating for us.
Dr. G said that our next step would be to put Xander on a hypoallergenic formula. One that is elemental, meaning that the protein is already broken down into amino acids. She thinks that it is more likely to be an intolerance to the food proteins that we are seeing than true food allergies.
She said that Xander seemed highly agitated from the very beginning of the appointment (before the skin testing) and she thinks that it may be that he is in pain and too young to fully express it to us.
So that is our plan right now. For now, Xander is only taking Neocate Junior-- no table food. Three 8 oz cups of it a day is enough to maintain his current weight and 4 will be enough calories to grow. We will be speaking with Dr. G soon to tell her how his symptoms change if they change at all. If they do change for the better, she will place a prescription through our insurance.
I'm really sad about this. I know that Xander has no idea why he can't have his beloved pretzels that he begged for tonight. I just wish everything didn't have to be so hard for him and I could take his place. I would in about 2 seconds flat. I couldn't even bring myself to eat my dinner until he had gone to bed.
A friend of mine said it so well when she said I had to mourn this. Normalcy as we know it doesn't exist. Almost all of our "free time" is spent in doctors offices. And now something that was so basic-- feeding my child, has changed drastically. I know we will get through this, but this is a road that was completely unexpected...