She made it through the first half of 1st Grade and initially things seemed to be a welcomed, somewhat quiet break from medical and educational concerns & issues. Morgan has been busy with a homework helper course, Darby's Dancers, Music/Piano and Hockey! She started Minnesota Special Hockey this winter and quite honestly we weren't sure if we would even get the equipment on her, but she is loving it and skating around with the skate trainer at practices and at our rink at home. Its been great winter exercise & an amazing program for special needs kids!
School was going well and she seemed to be enjoying it more this year (keeping her in school with regular attendance/schedule has helped) but started seeing concerns after a few months in with lack of progress on reading, math, self regulation and behavior issues. A meeting back in November prompted us to schedule follow up appointments with her Neuropsychologist and a child psychologist (upcoming) among other regularly scheduled follow ups. Unfortune reality I am learning for preemies & special needs kids is that once you get past the early years where the focus is primarily on medical stability and physical development needs the focus shifts to emotional and education concerns/management.
We met with her neuropsychologist last Tuesday after Morgan's evaluation to review the results with him. She was diagnosed with ADHD - Inattentive Type and Developmental Dyslexia (Disorder of Reading). Although all of the attributes he explained for her diagnosis are no surprise to us and describe her perfectly (difficulties regulating behavior, difficultly with perceptual motor processing, inattention, distractibility, poor task persistence, impaired phonological awareness and working memory, poor letter word identification, etc.) it is still a bit of a blow to add two additional disabilities to the list. He is concerned about the growing gap between her strong verbal skills versus delayed reading skills and managing her inattentive ADHD was largely the focus of the discussion because without the ability to maintain focus and attention she will continue to struggle in school. I have taken pride in the fact that to date we have kept her free of long term prescription medicines despite all of her medical issues and diagnosis, but here we are faced with the dilemma of treating this with medication. Since her diagnosis I have spent some time researching options and wrestling with the harsh reality of the fact that we will likely need to make some changes (whether medical, school, etc). We had an appointment with her pediatrician last night and discussed/reviewed all alternatives - any and every modification or adaptations we can make. A large majority of the things she suggested we are already doing (heavy focus on organic, grain & dairy light diet, limiting screen time, supplements, IEP accommodations, etc). Needless to say we left the appointment with a low dose prescription to treat :(. We are both very concerned about some of the typical side effects of the medication so will start with this low dose trial, slowly increase and closely monitor her appetite (she cannot afford to lose any weight or slow growth) , sleep and behavior.
Last Thursday we also had her Gait & Motion analysis follow up at Gillette's, they do this about a year post Rhizotomy surgery to compare results. Robot Morgan was in full effect again and she was very cooperative except for her refusal to wear a mask to measure stamina (again), poor girl is terrified of the mask due to the numerous surgeries she's had! We have an appointment early Monday morning to review the results and I will post an update at some point following.
