January 14, 2015
HAPPY NEW YEAR!!!
It has been A VERY LONG time since I last posted on Josie's blog. I have toyed with starting a new blog about every day life with Josie and our other girls Reese and Eliza, but at this point, I'm doing well to even get this update written. Someday though, you might see something new from me!
Today we begin a new chapter of therapy and learning for Josie. We begin Intensive Feeding Therapy in hopes that she will learn how to eat the majority of her calories by mouth. It is intense for a reason, Josie and I will be at Mary Free Bed for five days a week (Monday-Friday) from 8am to 2:30 for 6-8 weeks. Feeding times will be 8am, 11am and 2pm. They told us to prepare like we are in a full time job. We are excited about this opportunity and have much hope that she will learn what she needs to learn to eat with her mouth instead of through a tube. She is showing so much interest already at home for eating, it's quantity and skill that we are lacking to move forward, which this program will help us with. Please pray for us, as this will be a crazy ride the next several weeks.
As for other things with Josie, I'll try and update you without being too lengthy, but this kid is full of life and lots of good things happening.
Starting with the MRI results that Josie had at the beginning of December. Everything looks stable - which means she remains in remission! WooHoo! As we continue to have these good results, they (Oncologist Doctor) are extending her MRI's further out from each other, so now we only go every 6 months for imaging. Exciting and scary at the same time.
Cognitively, this kid is doing really well. Last year we had her at Ken-O-Sha Early Childhood Center. Once she got over her separation anxiety, the school year was WONDERFUL! Josie grew so much during that year and absolutely loved her teachers. At the end of the school year though, they told us that she would need to move to the main campus of Ken-O-Sha because she had reached the top of what she could do at that particular preschool. We toured the school and were mostly set to send her, except for one logistical piece that we couldn't seem to figure out. The school is a 25 minute drive one way if I drove her there and much longer if she took the bus, an hour plus ride one way, so two hours on a bus a day for a half day program. We finally made the decision to keep her home this year and I have been doing home school with her. God paved the way for this to happen and allowed many good people to help me set up for this in a short amount of time. Josie loves having school at home and will actually ask me if we can do school even if we have other places we have to go in the day. Our next step is to start working on school options for next year.
Conversation with Josie is very interesting, please be patient with her if she ever has a conversation with you someday. She is learning the art of communication, but she takes many pauses, repeats herself and will usually need me to prompt her with part of her thought that she is trying to communicate. Most of the time we can help the listener, but sometimes it just takes a while!
Many have seen Josie walking with only the aid of one of us holding her hand or under arm and have asked if she is walking on her own. She currently cannot walk on her own - if we were to let go of her hand or arm, she would fall almost immediately. Josie is missing a few links in the mobility process in order to walk on her own. The transition from laying down to sitting up is still a struggle and she cannot do this yet with out help - she is getting better, but still has to have help. Then the transition from sitting to standing is almost non-existent - this will be the next phase once she learns to get up from laying down position. Once piece at a time right now! Josie also doesn't have the protective reflex to stop herself if she were to fall from a standing position. We hope that will come as she learns each of the different stages. For now, she loves walking with our assistance and hopefully will learn to use her walker more for a bit more independence.
The final thing that I will conclude with is that Josie is in a Dance and Music class through Arts in Motion. She is the only one in this particular class, but she LOVES her dance and music instructors. Music has become a very important component to Josie's everyday life. For Christmas she received a mini guitar (similar to a ukulele) and a drum set and loves her instruments!
Thank you to all who continue to care and pray for Josie and how she is doing! We are so thankful for this little lady - she definitely brings spunk and spice to our lives!
Blessings,
Marc & Darcia
