Journal entry by Marc Brill —
I don't know if anyone still follows this page but wanted to put an update here in case. And in case someone finds this page through Google. It's been pretty smooth sailing since Brody's last surgery in 2010. He's been a normal kid. Wrestling, playing baseball and is super smart. A couple weeks ago we noticed swelling in his eyes, abdomen, and ankles. We were admitted to Children's for 2 nights for Albumin treatments. He was luckily able to make it on his 8th grade class trip to DC! But this definitely hit us out of nowhere.
At our last appointment, he was diagnosed with PLE. Dr Stiver explained PLE a little more to us. We will have labs Mon to check his levels. Hopefully they will do their job. Brody might be admitted if his Albumin is still low so he can get infusions to get his protein back up. She said we can wait on the Cath until we get back from Mexico as long as everything is going ok. We are so very thankful for that. We've had such a rough year and it will be nice to get back to our happy place. We were supposed to go in 2020 and cancelled because of stupid Covid. It would have been our last vacation with my mother in law and I'm so disappointed looking back. Dr Stiver said the possibility is there that we can manage PLE for years with meds. If meds don't work we would start talking to the transplant team. So overall a good visit. We are so very thankful for all your prayers ❤️ Keep them coming as we need these meds to work and give us several more years!! 🙏 I implore you to live life to the fullest. Don't let life pass you by. Love Big. Love Strong. Live Big. You never know what the future holds. #hlhsistryingtostopme #wewontletit #hlhswontstopme #Brody
❤️Leesa
At our last appointment, he was diagnosed with PLE. Dr Stiver explained PLE a little more to us. We will have labs Mon to check his levels. Hopefully they will do their job. Brody might be admitted if his Albumin is still low so he can get infusions to get his protein back up. She said we can wait on the Cath until we get back from Mexico as long as everything is going ok. We are so very thankful for that. We've had such a rough year and it will be nice to get back to our happy place. We were supposed to go in 2020 and cancelled because of stupid Covid. It would have been our last vacation with my mother in law and I'm so disappointed looking back. Dr Stiver said the possibility is there that we can manage PLE for years with meds. If meds don't work we would start talking to the transplant team. So overall a good visit. We are so very thankful for all your prayers ❤️ Keep them coming as we need these meds to work and give us several more years!! 🙏 I implore you to live life to the fullest. Don't let life pass you by. Love Big. Love Strong. Live Big. You never know what the future holds. #hlhsistryingtostopme #wewontletit #hlhswontstopme #Brody
❤️Leesa
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