For families that are touched by spina bifida.... http://www.homeschoolblogger.com/spinabifida/ en-us Homeschool Blogger Thu, 15 Oct 2009 11:22:00 -0500 Thu, 15 Oct 2009 11:22:00 -0500  My Review of "Someplace Called Special" This book is an excellent source of information and comfort. It's a special needs support group encompassed in a book. Having children with ADHD, Spina Bifida, educational gifts and other miscellaneous processing disorders, I found the stories reassuring on our decision of the call to homeschool children with special needs.  The definitions, resource lists and testimonies are wonderful. http://www.homeschoolblogger.com/spinabifida/736406/ Thu, 15 Oct 2009 11:22:00 -0500 http://www.homeschoolblogger.com/spinabifida/736406/ October is Spina Bifida Awareness Month. Emma is blessed in so many ways. Spina Bifida is simply something that she lives with. She uses it as a tool to be a testimony of God's greatness. The Schoolhouse Planner   http://www.homeschoolblogger.com/spinabifida/734362/ Thu, 8 Oct 2009 11:20:00 -0500 http://www.homeschoolblogger.com/spinabifida/734362/ I found the title of this entry to be awesome! It was at the top of page five from Emma's nueropyschological evaluation, September 25, 2009. The evaluation and report was expansive and very informative. Emma was diagonosed with Cognitive Disorder, NOS.  She has processing disorders, like many children with Spina Bifida. Basically, we need to allow Emma enough time to do her work and be sure to take breaks. She will benefit from lists, checklists, multiple choice/matching activities-testing, and repetition of directions. She will be evaluated again in 2-3 years. http://www.homeschoolblogger.com/spinabifida/733770/ Tue, 6 Oct 2009 15:41:00 -0500 http://www.homeschoolblogger.com/spinabifida/733770/ September was wild and wooly. Emma had a rough month with her bladder and kidneys. We also had Emma tested by a nueropsychologist concerning some processing issues I have noticed. With her urologic issues she had been battling an infection as well as her new ureathra (the outspout for urine) producing a lot of mucus. The middle of September, she was occluded somewhere along the catheter and the urine filled her bladder to an alarming and uncomfortable amount. We went to ACH ER for help. (I'm getting pretty good at reading an ultrasound, by the way.) After a few weeks, the infection is better but she still has a lot of inflammation in her left kidney. Surgery can be done on her bladder to correct this but we are hoping that a little time and medicine will take care of it instead. We are praying that if that is God's will, so it will be and if not I know He will give us the grace to accept it. We will see the doctor at the end of the month. Her nuerologic issues that have changed markedly since her April surgery were addressed at the end of the month. Some of the findings were alarming to me, but overall not surprising. Emma, like Macie & myself, was diagnosed with ADHD. The doctor believes it to be genetic, and I had already seen evidence of it over the last several months. Another thing was the fact that sometimes Emma can tie her shoes and others she would honestly not have a clue. What we learned is that Emma has issues with the part of brain that performs executive functions. To help with this we must really b-r-e-a-k down our day for Emma. We are expecting the final report from the doctor later this month. http://www.homeschoolblogger.com/spinabifida/732260/ Thu, 1 Oct 2009 08:56:00 -0500 http://www.homeschoolblogger.com/spinabifida/732260/ As I have let it be known in the past, we use a year-round schedule.  We arefinishing up our latest six-week session. Emma is doing alright, but I've noticed that her short-term recall is quirky. For example, we started doing some first-grade-type work this session. Emma is telling everyone she is in kindergarten. It's like it's she has never heard that she has advanced before. When Macie finished kindergarten our local homeschool group held graduations for kindergarten, grade 6 and high school. It has become a thing of the past, but maybe that's what I need to do for Emma. Emma doing well all in all with schoolwork. We're pleased that she is making progress with reading and math. We do feel that maybe she is having a processing issue due to her condition and that might explain some of her emotionalism and keeping up with things we are currently talking about. She will be tested in September for that. Emma has so many wonderful people that work with her through Arkansas Children's Hospital. They  have always been so good to work with my family and help Emma. That was why my NaNa requested funds be established directly at ACH for the Spina Bifida Program when she passed away a few years ago. Emma had an MRI on Monday that was part of her routine in osberving and treating conditions related to Spina Bifida. She has had well over a dozen of these in her short lifetime. It turned out to be anything but routine yesterday. She has to be sedated for it and this time she woke up during the test. They had to start an IV which is extremely traumatic right now due to the post traumatic stress she is working through. One thing we found out yesterday is that her urologic system was "extremely" enlarged. She had to undergo a bladder decompression (that's just cathing) and is wearing a foley catheter (not her favorite) until we see the urologist on Friday. Hopefully it's not a major setback and can be remedied with a different cathing schedule or medicinal change. She also has a swallow study and a doctor's visit on Thursday. Emma lost 9 pounds after her surgery and her appetite has not been steady since. She has gained half of that back but we are struggling to keep that on her. She doesn't like Pediasure but we still are encouraging her to drink as much of it as she can. (Ironically, her sisters love it!) ***Please pray for strength and wisdom.*** http://www.homeschoolblogger.com/spinabifida/720475/ Tue, 25 Aug 2009 08:44:00 -0500 http://www.homeschoolblogger.com/spinabifida/720475/