06/12/2025
Sorry for the absence and not keeping up with posts. Alice is doing well. She just finished 6th grade. She hasn’t had any relapses in her MS for approximately 2 years. We have had to switch IV disease modifying therapy due to insurance. She had an allergic reaction twice and was okay but it wa quite scary. She did well after slowing the infusion down. She’s scheduled to have her next infusion at the end of June. She’s doing well in PT, which she goes now every other week to help keep strength in her arms, legs and core. She fluctuates in her progress with PT, which is normal. She continue to we pain management at STL Children’s Pain management clinic. She also sees neuropsych , to help learn how to grow with a chronic illness and ADHD. Her right side, especially her leg always is the weakest due to where her lesions are. She has clonus in her right leg. Alice just turned 12 on Monday. We are approaching her 6th year of being diagnosed with Relapsing remitting MS, It has been such a learning curve and adjustment to what we now know as our new norm. She will never be the same as other kids her age and act as lively as other young kids/teens, but we are so blessed to not have had progression thus far for 2 years, thanks to her wonderful neuro team at childrens. Her Nurse coordinator, Anne is an absolute angel on earth. I can count in her for anything that pops up. She always has Alice’s best intentions and really advicates for her. Anne, is my hero!
Alice reads on a 12+ grading level. She reads a book or two a week. She also makes notes in a notebook of the characters in the series she reads ( warrior cats) She enjoys playing games (card games and bord games) youtube , playing games with her feiends virtually, and she loves sherbert! She jas geown so mich! Shwa 5’4” now! Before long, we will be eye to eye!
Especially lime 🍋🟩
Life is beautiful, Alice Is wonderful and our family is blessed. Always keep your energy in good spirits and be open minded to doing what your body needs. One day at a time! Love with no limits.
Have a blessed day.
