All things Brocoli

For many of you that don't know Brocoli is Brocs nick name. Its the name my mom gave him when he was little and its stuck. It used to be his favorite vegetable when he could eat.

We were a little concerned about Brocs leg length again. His P.T. was noticing some things that were concerning. He is not putting as much weight on it as he needs to. He is toe walking a lot when he is not wearing shoes. He is also having increased pain in the right leg again with riding his bike or playing on the court with his dad and brother. We emailed his Vascular team and they ordered an x-ray of his legs. Unfortunately Brocs legs are now 8mm apart. They were 6mm in May when we went for our follow up. We have not heard back from his Vascular Team so we are hoping that he can just wait till Nov for his follow up appointment. He will have his legs x-rayed again and if his legs are 9mm or more apart they will do an angiogram to see if there is another blockage. If there is another blockage it unfortunately will have to be repaired.

Thursday Broc and I took a trip to see the pain clinic. Unfortunately due to the nature of his diseases he has to deal with a lot of pain. The Palliative Care Team have been incredible with helping us manage his pain but sometimes he deals with pain that the meds do not even touch. Dr Nouri was so helpful in suggesting more supplements we can use and more techniques such as heat, massage, rocking,distraction etc which many of them we already use. He also suggested that Broc see a therapist to help him manage all his feelings better too. When he is in pain he is a totally different person and understandably so. Pain makes a person do and say things that they really regret afterwards and its so sad to see and hear especially as a parent. It also changes the whole family dynamic, the things we do / miss out on as a family and most important of all the relationships we have with each other in the family and outside. We are hoping that with these changes and added supports Broc and our family will help him to manage his pain better as this is something that he has to learn to live with.

We did get the call from Cincinnati Children's Hospital that they are willing to do Brocs surgery. That will be done at the end of October. They will also be checking a few other things out while he is under and in the OR. We are hoping for just an over night stay but as we all know Broc loves to make things so interesting. Its a very simple procedure but any time Broc goes under anesthesia his heart is at risk. He does not heal very well either so his ped here locally is ready for anything that Broc will throw our way once we are back home. Calls and texts are welcome while we are down there. We have not decided if we will all go down as a family to Cincy or if only Broc and I will go. It all depends on if  Mark will be able to take off work. If I end up going with Broc we will need lots of help please with taking care of Lil Mark during the day.

We had some time to spare while at Riley so Broc played in the Fun Zone. He has never been able to go there when we are inpatient as he is always too sick. 

 Thank you for all your love,prayers and support. Thank you too for all the friends that help out. Knowing the boys are well cared for and taken care of while I'm gone is a great relief.