A week of Specialists.

Tuesday we took a trip down to Riley to see Dr Nalepa. Him and I had been talking all weekend and deciding what was the main focus of our visit on Tuesday. It really makes parents so much more relaxed when the Dr is as invested in your child's health and well being as you are.

We spoke about how Broc has been since he came out the hospital. How he is still having fevers and chronic viral illnesses. Unfortunately until we get some answers there is nothing that we can do about the viral illnesses. We discussed Whole Exome Sequencing and what that entails. We carefully went though all the paperwork and signed it. He said that since we have come to the point where there is no more testing for Broc to figure out why things are not working properly then this will be our last shot. W.E.S. looks at Brocs entire DNA. I also did blood work myself and dad too. This will take about 6 months to come back so now we sit and wait. He does think that there is an issue with the way his immune system functions and not necessarily what it looks like on paper. Broc will be having his bone marrow biopsy on 31 August. Those results will take a couple days to come back. We have been told that it may look totally normal and that is also fine. We have also been told that we may not find out too many things with the WES either but at least then we know we have done everything we can to figure out what is going on. As a parent (mommy and daddy) we are supposed to make things better. It breaks our heart that we know that there is nothing we can do to help Broc but love him and take care of him the best we can.

Thursday we saw Dr Zaidi in South Bend. Thankfully the drive was not 7 hours roundtrip. We have to be thankful for small things right?
Dr Zaidi had a lot to discuss about how Broc has been since his hospital stay too. It seems as though his bacterial overgrowth keeps coming back once its been treated. Broc is so much better once he has been treated for it so we will treat him once a month for it. We are all concerned about Brocs weight. He cannot tolerate any more volume than we are giving him although we are trying to increase his rate by 1ml every week. I know that sounds like nothing to us but for Brocs digestive system its huge. We are trying a fortifier for him to add calories to his formula. If Broc were to get really ill with a high fever, flu etc he has nothing to help him. He has no fat stores to help him fight. That is why we have to protect him wherever he goes. Thankfully the new masks that we got him he can breathe through and loves wearing them. He loves it when people say "cool mask". He would like Broc to be monitored monthly by a dietician as Broc is lacking in 100 calories or more a day. We need to make sure he is getting enough fat, protein, vit and minerals etc everyday to build his body and make him stronger. He has sent a RX to our infusion company for TPN. If Broc has an episode where he is not able to tolerate his boost or formula after 48 hours then he will start TPN so that he doesn't end up loosing so much weight.

Friday we drove back down to Riley. It was so lovely to have a friend go with us. We love that your circumstances allow you to ride with us. I love the company and the way you keep Broc busy while I'm trying to talk to the Drs and listen to all the info. Our trip down was much better than Tuesday with all the rain and storms. It was lovely and sunny. Seeing Dr Boaz is such a treat too. He too is loving and compassionate like all the other Drs on Brocs team. We are truly blessed with a wonderful team for him that is invested in his health and loves him too. We caught Dr Boaz up on everything that has happened since we saw him last which was Dec last year. As many of you know a LOT has happened to Broc since then. He is concerned about his balance or lack there of and his continual pain in his legs and feet. He is also concerned about the blockage that was found with his saphenous vein in Jan of this year and wants to rule out any that may be hiding in his brain. Lets hope not. Broc loves to keep things like that a secret and then reveal them as a total surprise!! Dr Boaz has ordered a slew of brain and spinal imaging for Broc. Unfortunately we don't think it can be combined with his procedure in 2 weeks so it will have to be done on another day. We are hoping that there will be nothing serious with his brain but as always if there is we will do our best to deal with it.

We are seeing another specialist at the end of Oct. We hope that he will be able to put some of the pieces of the puzzle together for us. We are also hoping that he will start to formulate a really good plan when Brocs body goes into a crisis mode. We think he will be the Dr to coordinate all of Brocs care. He will be in touch with all Brocs specialists. He has a dietician as well and we are hoping that she will be following Broc too. All Brocs specialists are so eager for this app, maybe more eager than we are. They all think mito is a probability for Broc but he will be the one to makes that determination.

He may never eat like a "normal" person again. We don't know why he cannot digest food and the Drs cannot give us those answers either. Sometimes Drs just don't know all the answers like we want them to. They are all trying to give Broc the best quality of life they can. We know that soon Jehovah will make him well and healthy again. Broc knows that too and he looks forward to that time everyday.

Thank you for all your love and support and prayers.