Neuro Update and another virus

My dad and sister arrived last week. We have been frantically trying to get ready but to no avail so we made things as cozy as we could for them until Mark has some time off of work.
Thankfully they are very easy going and don't mind where they lay there heads as long as its warm and comfy. we love having them here. I have a huge load off my shoulders as I always have someone at home now to get Lil Mark on and off the bus or just watch Broc when I need to run an errand, especially when he doesn't feel good.

My sister is helping with cooking meals for us and my dad is helping me catch up with laundry and organizing the closets etc. I LOVE having them here with us.

This was the first night they arrived. The boys couldn't wait to have bed time stories.

My Dad and I took a trip to see Brocs Neurologist. I really love her she is so caring and loving with Broc. She is a little concerned about the episodes that Broc has been having so he will have a 3 day VEEG. Myself and my sister will bring Broc down the first week in Jan. It will be challenging as Broc will be confined to a room for 72 hours straight. We have hoping that he will have an episode during those 3 days to capture it. If not then at least we can rule out any other seizure like activity. We would welcome all visitors for those 3 days. It will be Jan 4-6 2016. She is also waiting for the WES results to come back as are so may of Brocs other Drs too.

Broc was able to have his very first friend sleep over. The 2 of them had so much fun playing Drs and hospitals cause what else do you do when you have a whole room full of medical supplies. 

Unfortunately Broc caught a nasty tummy virus over the weekend. Poor Buddy was so ill that he actually vomited past his nissen. He has not been able to throw up since he had his Nissen surgery last year. It was really quite scary as we were very close to packing up and driving him down to Riley. He is still having lots of pain but handling it well. 

He was so tired of not making it to the bathroom in time so he just slept on the floor. I did bring him a blanket to keep warm. I made myself some tea and we just sat in the bathroom for most of the night.

Brocs Fundraiser is still up and running. Crichfield Elementary has put it up on their website and we are very grateful for that. The money raised will help us pay for travel expenses and lodging while we are down in Indy. It will also help us with supplies and meals for us while Broc is in the hospital. We will have a stay in Jan and possibly one in Feb too as well as many Dr apps.

Here is the link for his fundraiser again.

www.booster.com/brocsbuddies2

Thank you for all your love, prayers and support.

       

  

Just a little update

Things are still pretty much the same with Broc. He is still dealing with daily abdominal pain. Some days are worse than others. On the bad days we just stay home and cancel everything we had planned for that day.We have a list of things we can do for him to keep him as comfortable as possible. Taking him to the hospital really isn't an option for him as there is nothing more that they can do for him there that we can do at home.

He is still very much dependent on his TPN. We are trying to increase his formula as much as he can tolerate but when he has really bad days we have to go back to an extremely slow rate which puts us back to square one again. This last year or to has taught us to have an extreme amount of patience and to be even more flexible than we have ever been. We could have a whole day of fun planned and then Broc would get sick the night before or even that morning and then everything gets put on hold until he feels better again, even Lil Mark is starting to understand. Now when we make plans only Mark and I know about them and the boys will only get told a couple hours before hand so that they are not disappointed every time.

Brocs IV therapy has been put on hold to till next year. This will make his immune system as "Broc" as possible. His Hematologist is wanting to do more in depth testing to see if we can get to the bottom of his crazy immune issues. Since stopping the IV therapy Broc has started having his fevers again, his sensory issues have become crazy again and just having some really bad days. We are hoping that he can manage until the testing will start in February.

We found out some more bad news yesterday but nothing has been confirmed yet so I cannot tell any details yet. Once I have spoken to Brocs ped I will let you know.

We were able to attend the Assembly this past weekend. It was a great day. Unfortunately Broc got worse as the day went on so I spent most of the afternoon with him lying down. We got to meet a brother and sister from South Africa that were special speakers at out Assembly. What a treat. He tried to talk to me in Afrikaans but mine is almost gone as I haven't used it since I have been here in the US.

Daddy took the boys to see the Noah's Ark display in the morning. They were so enthralled with it. They could stand there for hours looking at all the animals and different things that were so intricately placed.

This pic was taken towards the end of lunch. By this time was was not very happy at all.

We have started selling t-shirts for Broc again too. You have the option to have your t-shirt shipped to our house or to yours which ever is easier for you. If you are in South Africa you can have your t-shirt shipped to our house and my dad will bring it back with him. Here is the link to buy them.

www.booster.com/brocsbuddies2

Thank you for all your love, prayers and support.