Neuro surgery and hematology update

Our whole family took a trip to Riley this week including Brocs nurse too. We learnt a lot more about Broc and Mark. Lots of things were explained in more detail and we have a better understanding now.

Seeing Dr Smith was a great appointment. She was very straight forward and no beating around the bush. I had emailed her about Brocs urology issues and the first thing she showed us was how big his bladder was while he was under anesthesia for his MRI last year. It was huge to say the least. They have ordered some urology testing for Broc along with some ultra sounds too. We will test how his bladder functions and how his brain responds to it. We will also be able to see if the nerves are working properly. Once we have the results we will know if Broc will be having Tethered Cord surgery or not. We have been told what issues can he helped with the surgery and others that cannot.

Dr Smith spoke at length about the Chemical Meningitis that Broc had after his brain surgery as well as the extensive healing issues we had. If we do decided to go the surgery route Dr Nalepa will be helping us with pre meds to try and prevent the issues we have had before with surgery. Slowly but surely we are learning what is happening with Brocs body and how it wants to be treated.With this new information we are able to make better decisions about his care.

Both Broc and Mark will be having MRI's later this year to keep an eye on their spines and brains. We were told that typically if one member of the family declines with their Chiari there is a very good chance that the other siblings will have the decline as well especially when there is a connective tissue disease involved.

If Broc does not end up having the T.C. surgery now then we may have to consider it later on down the road depending on what his MRI says later this year. We will also proceed with the Motility Testing as soon as possible to see if we can figure out why his GI system doesn't work like it should. Even if there are solutions to help Brocs GI system they may not be a viable option for him as we will have to way the risks and benefits due to his compromised immune system.

Dr Nalepa finally got to meet the whole family. He is very intrigued with our family and our boys genes. We did find out that Broc does have NK Cell Deficiency. We are in the process of testing his T Cells and a few others too. This diagnosis will explain why Broc continues to get viral infections. He doesn't have all the defenses his body needs. He will be starting IV therapy again to try and help his body. The Therapy doesn't prevent him from getting ill but it does help his body when it does get ill. It will hopefully help with his crazy sensory issues that he is dealing with now too. His sensory has gotten so bad that sometimes he ends up hurting himself because he is not paying attention.

We also tested Mark for the same mutation that Broc has. Those results will take a month or 2 to come back.

Unfortunately Brocs body will only decline over the years until he is made whole again in the New World. Our goal is to give his body all the support it needs to function on a daily basis and to give Broc the best quality of life. It will be a busy couple months coming up.

Broc got a new Charlie (his IV pole). He loves it and so do we. He can draw on it with washable markers. He can hang all his toys on it. Best of all it hold all his IV bags and fluid bags and pumps all at the same time without tipping over. This is such a blessing for us as he was getting bruises daily from his old IV pole tipping over from being too heavy on top and very wobbly. The handle around the middle is great for when he needs to hold on to something to steady himself on the rough days.

Thank you everyone for all your love,prayers and support.