Hey! My family and I are making this page for our son Benjamin. He was born 06/14/2014 this day my world came tumbling down my baby boy was born with x linked myotubular myopathy. He spent 52 days in the nicu at winnie palmer hospital were he got his g tube and nissen done He came home not even for two weeks and we were back at the hospital. We got him transported to shands hosptal in gainsaville fl. We spent almost a month. We got to go home for almost 3 weeks. We are back at shands now. We had to trach our baby boy! The hardest thing we had to deside. He seems more comfortable! we have been here over a month. Now we are learning how tp change, clean everything with his trach. Im so nervous! Scared! Emotional! My three old little girl summer has been the strongest one she is my rock! Rolf the father of my babies has been so strong too! Trying to go back and forth to orlando and here is tuff trying to work as much as he can and make sure we are ok here. My daughter stays with me here. We stay in the ronald mc donald house but sometimes we cant always get in. There is so much more! Please get our little familes story out there and please send your prayer or thoughts for baby benji and our little family!
We have been home for a while. We just moved into a nice home thanks to our kids grandfather it is a much better environment for my kids. They both have there own very nice rooms. It's a little emty because we had a very small home before we have faith it will come together soon. We do head back to Gainesville fl soon we are very nervous but he has been doing great! Hopefully it will be a short trip. Thank you everyone for all your support! Please keep sending your prayers and thoughts. I will keep everyone updated on Gainesville.