Time marches on.....

Looks like it is time for an update on Brennan! We seem to keep busy in our household. With the new year started I was hoping to have more time but it looks like that is not the case. Tonight as I write we are in a sleep study for Brennan. I thought I was going to pass out when he did but my mind still can not shut off plus we are right by the helicopter landing pad. It has been busy tonight between Cardinal Glennon and SLU. In February we saw Dr. Geller, his neurologist, for a follow up when Brennan was hosptialized with seizure activity. We had a pretty in depth conversation about his Chiari and EDS. Now that we have had the surgery it is time to figure out some other things that are going on. We are currently in the process of being tested for ADHD, PTSD and a couple other things. I have always questioned this about Brennan. It was time to move forward with this stage. Paperwork has been turned in and we await a phone call from the Knights of Columbus Center here at Cardinal Glennon. Seems like the conversations I have had with other mothers who have a  child or children with Chiari also have ADHD. It helps talking to an awesome group of mothers! Some articles have linked these together. Pretty interesting! Brennan is also a restless sleeper so he also ordered a sleep study. As I write Brennan is asleep. Lots of wires connected to him but we are hoping it will give us some answers! We also saw Dr.Frim in February. That was a follow up from his surgery in Nov. Brennan was released to go back to PE and recess. That was a big deal for him... he was missing playing with his friends! Dr. Frim will continue to monitor his pseudomeningocele ( leak at the base of the brain) for now. If it starts to bother him then we will let him know. We will head back to Chicago in August before school starts. He is definitly keeping up on his Chiari. We will also be back up there in Nov for his one year check from surgery. Dr. Frim is pretty amazing! Highly recommend him!!! March 3rd we met with Dr. Showengerdt, a cardiologist, to see about these episodes that Brennan has been having with his heart. After explaining about these episodes and doing an EKG, he felt that he needed to put Brennan on a 24 hour heart monitor to see what is going on. We are awaiting results and should know in a couple weeks what is going on. We also met with Dr Moore and Dr Rizwan in the afternoon. They are both his Rheumatologists that deal with his Ehlers Danlos Syndrome. After a very long visit and lots of talking they both felt like it was time to put him on a daily pain med to help take the edge of the pain he has. They did a thorough physical exam and still come to the conclusion that Brennan still has weak muscles and very loose joints. We are continuing physical therapy to help strengthen him up. They also ordered some bloodwork on him. Right now we are just waiting to see what some of these tests say.... heart monitor.. sleep study.. Knights of Columbus. We will continue to wait and move onto the next chapter. Still a long road ahead.......