Tuesday, July 30, 2013
His appointment went well and we are set to have an IVP for his kidneys to check the function of each on the 26th of August. This will be an all day affair beginning at 8:30am and going through the afternoon.
Tomorrow Drake has a followup with his pulmonologist, and we are excited for him to see how well he is doing without his oxygen. I'm sure he will want us to keep oxygen supplies on hand through another RSV season. We don't mind keeping them on hand for emergencies; it gives us a safety net.
Today was a day off from appointments; although, I wouldn't call it a free day. We have his Snowdrop program to complete daily. Jacob was here with us today and we looked like a daycare. I realized quickly that I would not want to work in or run a daycare. After looking into childcare facilities during my pregnancy and thinking they were outrageously priced, I am now seeing things in a different light.
Kennedy is doing great, and she keeps herself and us laughing daily. She's a mess! She has become very interested in playing with Drake's hair. She doesn't pull it (we are watching very closely) but she plays with it gently. It is similar to how gentle she is when petting our dog.
Saturday, July 27, 2013
Tuesday, July 23, 2013
Friday, July 19, 2013
Tuesday, July 16, 2013
Friday, July 12, 2013
We are so excited to be a couple of weeks into Drake’s new program! His program is provided through a group located in the UK called Snowdrop. Snowdrop for Brain Injured Children provides programs of neurodevelopmental stimulation for children who have a wide variety of diagnoses, such as cerebral palsy, autism, ADHD, learning difficulties, developmental delay, PDD and many more. They have chosen the name Snowdrop because it is a symbol of hope through adversity, which is a good metaphor for the families and their children who are aided through the individualized programs. Snowdrop is also one of the first flowers of the year which despite the cold, frost and sometimes the ice, fights its way through these hardships to flower. We already know that our little Drake is a fighter, so this is a perfect fit!
The founder of Snowdrop was previously a chemist who switched directions with his life following the birth of his son with ‘catastrophic brain injuries’. He and his wife, just like us, were told that his son would not live past his 2nd birthday. Also, like us, they chose not to accept this and through furthered education and research, he and his wife defied the odds and greatly improved the quality of their son’s life. Their son, Daniel, lived to be 16 years old and was able to live a much better life thanks to the efforts of his parents. They have devoted their lives to helping other children and their families, and they began the Snowdrop program in 2007.
We are participating in the distance program, as we obviously cannot travel to England at this time; however, we would love to someday for one of his reassessments. I communicate with the founder, Andrew, on pretty much a daily basis thanks to the internet. For Drake’s evaluations, we send videos and answer questions since we are not there in person. Every 5 months a reassessment is completed, and his day-to-day program that we carry out at home is adjusted. We know that this is a long journey, but we are dedicated to his daily exercises. This is in addition to Drake’s regular therapies.
I am a part of a parent group who all have children in the Snowdrop program. Each child has an individualized program written to meet their special needs, and I have enjoyed communicating with parents from around the world. I am one of the only parents in the US; therefore, I am adjusting to being referred to as Drake’s “mum” and being told that he is a “handsome little chap.” One of the other parents said that the Snowdrop program is a long term project. We are preparing for an assault on Everest, which has to be at least a five year project! We haven’t left our own country yet, just doing a few limbering up exercises down country lanes and the snow-capped mountains are a long way off, in another continent, but we will get there! Yes, Drake, we will get there!