On Sunday Uncle Alexi ran the first of 2 half marathons. Our mom would be so proud, because he finished 2nd Place in his age group, and 24th overall. Whoa! If you'd like to donate, the link is here. Congrats to our Hero Athlete Uncle Brother! Next race: June 1st.
UPDATE: Before surgery Isis never ever ever enjoyed being pushed around in any chair or apparatus while seated. She had to be carried until she was late into her 3rd year and then would consent to sitting but only in small doses. When she was 7, we were granted an adaptive tricycle where she could sit up but move her legs through a full range of motion. Then we got a stander with bike wheels that could go outside (even in the woods!) and she loves that, too. But for the 4 post-op weeks we are limited to a) laying in the rented hospital bed on either side or on back or b) sitting in the wheelchair, on a bench with assist, or on the edge of a bed also with assist. The spinal fusion has made sitting bearable again, but only with walking or pacing around the house. Thankfully, the cold weather has broken, so in between rain showers we take lots of walks around our neighborhood. This is so much better than walking in circles around our tiny house . We get to visit with neighbors and meet new dogs! But Isis has lost a lot of weight and a lot of blood and probably some muscle mass. She can't exercise. And the future of her physical activity limits remains unknown. Right now we are focusing on nutrition, boosting calories and keeping the incision and staples clean and dry (a true challenge with incontinence and weakness and learning how to work a whole new body). We are so grateful to family, friends and well-wishers as members of our extended support network! Thank you all, Amanda
Cerebral Palsy is not progressive and you can't die from it, but the myriad complications resulting from the spasticity: bones pulled out of position, tendons shortened into contractures, muscular weakness wreak havoc on the body. In adolescence, as bones grow, many complications arise. In the case of Isis, a spinal curvature of 63 degrees was discovered in June 2012. Scoliosis associated with CP cannot be corrected with bracing; a posterior spinal fusion was the only option. The curvature progressed to 93 degrees by Feb 2014, and with it brought decreased function and increased pain and discomfort in all activities and positions. Luckily, the curvature was not compromising the heart or lungs, just the abdominal organs. Isis is currently at the children's hospital of Pittsburgh recovering from the spinal fusion. She lost 1000 mL of blood during the 9+ hour procedure, and is recovering nicely. Within one year, the spine will have totally fused and her normal activity will resume slowly during that time.
Dear Friend: My niece Isis will be twelve this June. She has spastic, athetoid quadriplegia Cerebral Palsy, which is the result of brain damage during birth. Isis remains speechless and motionless, taking nutrition from her gastric feeding tube. She is confined in perpetuity to a wheelchair. She cannot perform simple daily tasks that you and I take for granted. She does not know what it's like to run, but you and I do.
On May 5th I will run the Safari Park Half Marathon and on June 1st I will run the Rock & Roll San Diego Half Marathon for what has now become an annual charity, the Run 4 Isis. I am asking you to once again consider a financial contribution to enhance Isis' life.
For the last seven years, I have raised money and put my body to the test as a means of working hard for your contributions, and honoring the physicality we all take for granted so that Isis may return to the National Center for Intensive Pediatric Physical Therapy, the Euro-peds clinic. The physical therapists and other staff members offer her emotional, intellectual and physical stimulation beyond what my sister, Amanda, can provide as a single mother. Your generosity allows Isis to receive assistance that enhances her progression toward a most basic level of inclusion in everyday life.
Each visit to Euro-peds is $6000, so that is why I am running two races!
As we enter this eighth year of fundraising, we need to celebrate our success. Together we've raised over $70,000 for tuition at Euro-peds, as well as new wheelchairs to accommodate her physical growth, and specially-equipped computers and other essentials to facilitate her everyday life. What an extraordinary group of people you are to continue to contribute to her life!
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