One day at a time

Broc has still been pretty much the same. We still don't have the results from his test last Friday. So far he is tolerating his formula at a slower rate. Slow and steady wins the race right? He has had a couple bad days in between where we vent him more frequently throughout the day. We went down to Indy this week to see his Neurologist. She was very sad to see how much his body has declined over the past year. She ordered more testing and the decision to do Whole Exome Sequencing was brought up. The possibility of mitochondrial progression was discussed too. It was a really good visit.

Once we were done we headed back to the hotel and met up with Kelly and Aiden for lunch. What a blast!! Broc has so much fun just being a kid and having fun.

Once we were done stuffing ourselves with food, well everyone besides Broc we headed back to the hotel for a nap and some down time. I was totally exhausted from driving all over the place. We had to be back at Riley at 5:30 the next morning.

All went well with his Endoscopy. Dr Steiner was great as always and very concerned in Brocs health and decline as well. There were some findings on his scope. The biopsies that were taken will hopefully give us some clues. We may not like the answers but never the less they will be answers. He was hoping to have his CBC results before we left but unfortunately they were not available. I did receive the phone call while we were driving home about his results. Once again they were some critical levels. I spent the better part of Friday afternoon trying to get a hold of all his Drs to let them know the results. What a headache!!!

After many phone calls we have an app to see another hematologist at Riley tom. Broc and I will be making the trip down to Riley again tom bright and early. We are really hoping to get some explanations and understanding as to why his levels go so low and what is going on. We are really hoping to leave with a plan.

Please say a prayer for us that this Dr will be understanding and helpful.

We have started a booster to raise money for a wheel chair or special needs stroller for Broc. I know many of you say insurance will pay for it. Believe me we have tried. None of the many dxs that Broc has qualifies him for a stroller or wheel chair. He is needing more support for his body and legs that the regular wheel chair can give him. If you would like to purchase a Broc's Buddies T-shirt here is the link.

http://www.booster.com/brocsbuddies

We are going to have a couple more apps where we will need help with Lil Mark. If anyone would like to help please let me know.

Thank you for all your prayers,love and support.