#nr2f1

It’s a grainy video with unflattering views but I do not care because Emma took steps on her own today and our therapist was able to capture them on our telehealth session!!!! This has been something we’ve been working on for over 2 years and today Emma decided it was time to 1) Stand Unassisted for 3+ minutes (multiple times) and 2) Take Unassisted Steps (multiple times)!! I am unbelievably proud of this girl and her resilience. Even though we’ve had major regressions over the past few months, there are still times when she surprises all of us and does something new!! ⁣ ⁣ #emmaleimomi #mygirl #firstunassistedsteps #unassistedwalking #unassistedstanding #physicaltherapy #PT #shedidit #specialneeds #specialneedslife #bbsoas #nr2f1 #cvi #onh #ona #hypotonia #gtube #autism #asd #spd #AFOs #billyshoes #teletherapy https://www.instagram.com/p/CCJtIZgH--H/?igshid=13qfakm0yyrj0

Virtual School is hard, have less than a month left and she’s very used to her schedule but it’s still hard. Keeping Emma sitting in a chair (without Dora on the iPad) and staying engaged with her class work has been a struggle. Add on barking dogs, both moms still actively working during class sometimes, and throw on the very loud construction happening next door for the past month it’s even harder. There have definitely been days where she only lasts for one or two centers at most, but through it all we have seen so much growth!! Last summer Emma wouldn’t dare touch something as sensory filled as Braille paper, touch paint, or hold a maker for 5 seconds, those were not even emerging skills she had. But she has made progress and now loves Braille paper so much that it lead to her very first time finger painting because she loves the feel of the paper. I know her past therapists have to be proud because before school started she would barely look at a piece of paper, let alone hold one!! ⁣ ⁣ As I sit and make notes for her upcoming IEP meeting these things have been in the forefront of my mind. And I am beyond proud of my girl for the amazing things she has been able to accomplish! ⁣ ⁣ #emmaleimomi #mygirl #specialneeds #developmentalpreschool #nr2f1 #bbsoas #boschboonstraschaafopticatrophysyndrome #CVI #ONA #ONH #sensoryprocessingdisorder #spd #autism #autismspectrum #asd #hypotonia #developmentaldelay #gtube #keepmovingforward #IEP #iepprep #braille #virtualpreschool #foundationforblindchildren #OT #occupationaltherapy #speechtherapy #physicaltherapy #musictherapy #pettherapy https://www.instagram.com/p/COJ-602swIg/?igshid=qb6ltdfw24ja

“There is no limit to what we, as women, can accomplish.” - Michelle Obama⁣ ⁣ 𝗛𝗮𝗽𝗽𝘆 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗪𝗼𝗺𝗲𝗻’𝘀 𝗗𝗮𝘆 𝟮𝟬𝟮𝟭⁣ ⁣ Every day I try to be the best woman I can be to help raise this girl to become the best she can be. Emma is the most resilient girl I know and with each challenge that she faces, she squares up and gets over the hill slowly but surely. We know that are limits to what she will be able to do, but we will raise her to see those limits and push as far as she can go. After all ceilings are made of glass, not cement! #emmaleimomi #mygirl #nr2f1 @nr2f1foundation #bbsoas #bbsoasstrong #bbsoaswarrior #bbsoasawareness #cvi #onh #ona #lowvision #gtube #spd #autism #girlswithautism #girlswithfeedingtubes #internationalwomensday #womensday #womenareincredible #girlsrule #girlsareawesome #girlwarrior #specialneeds #glassceilingsaremeanttobebroken https://www.instagram.com/p/CMKw3WJMvN3/?igshid=qqhhq9mueb2t

As she gets older and more mobile we noticed the changes she made in her stims. She’s always moved her hands since day 1 and has had a fascination with spinning. As we introduce her to new things we’ve seen her stand movements evolve into holding new textures and petting them. Today she explored Diana’s sweater for the first time that has been around for 2 years. Now it was only for a few minutes and then she moved on, but this is a huge goal for her. Anytime she touches a new texture it’s a win in our box and a new inchstone she reaches!! ⁣ ⁣ #emmaleimomi #beautifulgirl #bbsoas #nr2f1 #autism #sensoryprocessingdisorder #cvi #ona #onh #hypotonia #gtube #specialneeds #stim #stimming #autismmom https://www.instagram.com/p/CJ160rsMBN-/?igshid=iqfqicm0lxwg

Round 1 of imaging under anesthesia today! Emma is getting her annual MRI of the Brain to check how her optic nerves and brain are looking so that we have a yearly baseline for her genetic mutation. This girl is my warrior and still has a smile even on days she’s stuck in the hospital!⁣ ⁣ #emmaleimomi #mywarrior #bbsoas #nr2f1 #boschboonstraschaafopticatrophysyndrome #bbsoasstrong #bbsoasawareness #opticnerveatrophy #brainmri #phoenixchildrenshospital https://www.instagram.com/p/B8rTqh4lRrp/?igshid=tq7yb5zqyame

Happy World Braille Day!! Because we don’t know Emma’s vision acuity or how long she will have vision in her life we are taking baby steps to get her prepared for her possible future. She loves wooden toys so these blocks and tiles are amazing because they have both the lowercase and uppercase letters so she can learn to differentiate them. We have started learning Braille as well and it is one of the most difficult things I’ve had to learn, but anything for my baby to make sure she gets everything and anything she needs to progress and succeed in her life!! And you only get one of each letter, so Emma’s initials it is because of double letters in all of her names!! ⁣ ⁣ #emmaleimomi #bbsoas #bbsoasawareness #boschboonstraschaafopticatrophysyndrome #nr2f1 #nr2f1foundation #geneticmutation #visuallyimpaired #babyglasses #opticneverhypoplasia #onh #opticnerveatrophy #ona #strabismus #corticalvisionimpairment #cvi #braille #nationalbrailleday #brailletoys #brailleblocks #learningbrailleformybaby #anythingformybaby #specialneedstoddler #specialneedsmom #specialneedslife #preparingforherfuture https://www.instagram.com/p/B68sjdZFqRk/?igshid=1v8w4qixm6z1h

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My Tiny Superhero Emma!!! This month she participated in the Growth Mindset Mission and has been working hard on her standing, she has even stood unassisted for 6 seconds!!! We love @tinysuperheroes for everything they do to encourage our littles to never give up and to keep growing in every way possible!! ⁣ ⁣ #emmaleimomi #SuperEmma #bbsoas #nr2f1 #boschboonstraschaafopticatrophysyndrome #sensoryprocessingdisorder #opticnervehypoplasia #opticnerveatrophy #cvi #onh #strabismus #visuallyimpaired #babyglasses #hypotonia #hipdysplasia #riftonpacer #riftongaittrainer #afos #tinysuperheroes #mytinysuperhero #nevergiveup #growthmindsetmission https://www.instagram.com/p/B4SxXgYFAzB/?igshid=ci1nyryqvu1l