Atlanta appointment #2

Big sister keeping Bubs happy during his appointment

We just got back from HOTlanta - and boy was it ever hot. In the 90's. We were very grateful for the pool at the hotel after the 4 hour drive there. We saw GI this time. I feel like for the 1st time this GI doctor actually LISTENED to us- I really, really liked her. She has ordered an MRI to look at his head and neck. It's another hour of sedation which is terrifying with Macsen's history - but the only way to see if that lymph is affecting him in ways we cannot see via xray. They also want to see if insurance will pay for an intensive 6-8 week inpatient feeding clinic There is a long waiting list so maybe after getting the MRI, ear tubes, and ruling out any physical reason Bubs can't swallow we can get him to eat without needing to go to such an extreme method. It would be tough with the girls in school, Aaron working and me in a different state away from them for so long. We would need tons of help. I have faith we can make it happen if that's what needs to be done but praying we don't need to. And if insurance won't pay I'm afraid the clinic is out of our reach at $50-$80,000 so there's that.
The trip was hard on Macsen - he was irate and uncooperative for the first time at a doctor appointment :( He screamed through blood pressure check (so they were unable to get anything,) screamed through weight and height check, and screamed for about 5 minutes after getting into the room. Finally Nurse Mimi  went and got the rest of the family in the hopes it would calm him down. It seemed to help -  his older sisters played cars with him so I could actually talk to the dr without him screaming and turning my face with his little hands. He turns it so I have to look at him, like he's saying "I don't think you realize how upset I am - look at this face!"
I don't know if he is just putting 2 and 2 together that doctor appointments are scary or if it's his age or if it was his canine teeth coming in (you can just see them peeking through) but he has not been a happy camper. I hold him 105% of the time - even in the middle of the night he crawls onto my chest and rocks himself back and forth. It is all I can do to get a shower every 2 days and sometimes I just bring him in with me. He may have grown 3/4 of an inch - I never 100% trust his measurements when they are done in different offices - but a growth spurt could explain his crabbiness too... I think. Could be many other things - heart things, gi things, ear things.... so many things. Praying in the next month we can lessen that list - at least the treatable ones to make him more comfortable and give me a tiny break. You know to shower and eat breakfast.
We also met a nutritionist that was open to my need to stay away from corn syrup. Macsen won't drink any of those sugary calorie drinks anyway. We are going to try adding 1 tablespoon of gelatin to my breastmilk (spread over many bottles to mask it) to get in an extra 6 grams or so of protein in his diet. Hopefully he won't boycott eating all together which he has been known to do when I hide stuff in his milk.
I will keep everyone updated on the MRI and tube situation. I think it will be soon. Thank you everyone for keeping him and our family in your prayers. Sometimes all of this seems so overwhelming but then I look at how far Macsen has come and I know we can and will do whatever needs to be done for our little miracle man.
On a good note, we got to spend some time with one of Aaron's best friends from Maryland. We ate a nice dinner with him on his way through town. It's always nice to squeeze in a little normal on our trips and we appreciate Kenny and his buddy Lucky driving 200 miles out their way on their 1800+ mile roadtrip to come see us.