Xavian Hall's Journal
Written Jul 25, 2012 11:52pmI apologize for the lack of updates. We've been staying busy this summer. We've spent some time at the beach with family, I took the kids to my parents for a visit, a little trip to ATL with some girlfriends, and participated in the reading program at the library. Dante attended a 3 day basketball camp put on by Upward. He LOVED it and all the "basketball things" they did (his words, not mine). Xavian has gone from hating the water last year to LOVING it this year, not wanting to get out. His favorite thing right now is to fill up our garden tub and "go swimming". It's the little things, right? He's so cute, I can't get past it! Larkin, well she's ALL over the place. She's got two older brothers to keep and up and is well, pretty good at it. She gives them a run for their money, that's for sure. She and Xavian are inseparable and Dante is just smitten with her. I feel sorry for any boy that tries to even talk to her in the future.We've been trying to live life simple...get rid of the "fat" in our lives. We've started by purging our house of unnecessary things. Just today Dante helped me clean his and Xavian's room. Getting all the toys, puzzles and games out that they don't play with anymore. I explained to him about sacrifice...he chose to give things away he didn't really want to just to make someone else happy. I love living life with my family...they are the BEST!The boys will be starting school soon (Aug 20th). Dante will be in Kindergarten and Xavian in 3K. Not before Xavian's MRI though. Wednesday Aug 1st he'll have the MRI followed by appointments with both Dr. Reddy (neuro oncologist) and Dr. Rozzelle (neuro surgeon). It's going to be a LONG day. If you all would please pray for the obvious...NED (no evidence of disease) and also my nerves. They start to get a little rattled about this time, just before he has an MRI. Thank you all for following us and continuing to pray for/with us!
Written Feb 21, 2012 8:44pmWow. We've been CRAZZEEEE busy around here. Once Xavian got out of the hospital (shunt free) we've been non stop with Dante's school and Xavian's therapy/doctor appointments. We've been chasing Larkin around now that she's walking. I'm not even sure where to begin...Xavian started the preschool program in our local public school system. He rides the bus to and from school. I cried that first day he got on. I was really ok until he started crying. Not gonna lie, I emailed his teacher as soon as I got back inside...she emailed me back and said he did great. A friend even drove up as we were loading him up and followed the bus to school. She was dropping her girls off at school so it's not like it was completely out of the way. Ha. If I didn't have to get Dante ready for school I would have totally jumped in her van and followed along with her! He came home and all he really said was "I ride the bus, I like it" He's going to school Wednesdays and Thursdays and seems to enjoy it. LOVE his teachers and bus drivers! On Mondays and Tuesdays I've been taking him to outpatient therapy at Children's for PT and OT. We've been blessed to have great neighbors and a great place of employment for Matt. One of our neighbors keeps Larkin for me so I can take Xavian to PT and OT and Matt is able to work from home a few days to keep Larkin as well. Blessed, for sure. I have to say we've also been blessed with some great insurance. Our 2 week stay at Children's and the multiple surgeries this last time was completely covered! Thank you BCBS! There has to be a downfall somewhere, right?! Yep, there is...we filled out paper work to get Xavian into the Constraint Induced therapy program and he got in within a week of turning that paper work in! But, because BCBS is here in AL and so is this CI therapy they won't cover all of it. Why? You're guess is as good as mine. So, instead of doing a 3 week regimen we are doing a modified one. We start next Monday, Feb 27th. He will have a cast made for his right arm (the "good" arm) that day. We will then return every day for 2 weeks for 2 hours at a time to work on getting him to use his left arm/hand. The cast he's going to have made will be one we can take off and put on instead of leaving on the entire 3 weeks. I'm really excited to get this started and see the progress he makes. In just one week of really working with him (meaning I physically hold his arm while the therapist "makes" him use the left arm) it's amazing to see him actually extend his fingers out to try and grasps something. His elbow extension has even improved. I will tell you, it was hard..he did NOT want anything to do with it. I cried, he cried but he totally picked up a small plastic toy and moved it across his mid line and placed it in my hand! We've gone from just his AFO for his left foot to a splint on his thumb (to keep it from fisting up under his other fingers), a weight bearing splint, a resting hand splint, a resting foot splint and custom made brace from his left foot. I think we'll just call him Go Go Gadget with all this stuff he has...Matt and I joined a small group at church that consists of parents/caregivers of children/adults with special needs. God is doing some amazing things in me already through this. We are learning now about living a life of freedom EVERYDAY by just learning the truths the bible tells us about the tree of the knowledge of good and evil and the tree of life. EVERYDAY we have to choose between the Tree of Life and the Tree of Knowledge of Good and Evil. God pursues you every day...what will you choose? Freedom or Bondage? Grace or the law? Eternal Life or Death?Thank you all for praying for/with us during these past 3 difficult years. God had seen us through and continues to carry us. Thank you, thank you, thank you!
Written Jan 12, 2012 9:45amPlease say a prayer for my nephew (Darnell) and my sister. Darnell just went back into surgery to FINALLY fix the fistula in his throat so he can get off his feeding tube. I will keep you all posted as I hear more.