#emmaleimomi

[emmahastwomoms]

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A post shared by Ashlee - Emma's Mommy (@emmahastwomoms)

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

[emmahastwomoms]

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A post shared by Ashlee - Emma's Mommy (@emmahastwomoms)

This video is giving me life right now!! It has taken years for Emma to take a bite of anything on her own. We’ve been working tirelessly with her and her feeding therapist to get her to simply take a bite on her own and lately she has been showing an interest in doing it on her own. Granted we are still on mango purée, I’ll take it. Luckily this Mommy made some bomb guava cupcakes that went wonderfully with some mango whipped cream. We got that “cake smash” we’ve always wanted and I can’t wait to see how much more she will do now that school has started!! ⁣ ⁣ #emmaleimomi #mygirl #thirdbirthday #shesthree #cakesmash #mango #dysphagia #eatingdisorder #oromotortherapy #feedingtherapy #gtube #gtubelife #tubie #cutiewithatubie #nr2f1 #bbsoas #autism #spd #ONH #ONA #CVI https://www.instagram.com/p/CDklAdOAh8E/?igshid=12qcptm650y7

[emmahastwomoms]

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A post shared by Ashlee - Emma's Mommy (@emmahastwomoms)

Last night Emma decided she needed to stand up for 4 seconds unassisted while watching her iPad. Recently she has been attempting to stand up unassisted but due to her lack of depth perception she thinks furniture is much closer than it is and she drops down. It is working through to get her to stand up without holding so we’ll call it her double-edge sword. #emmaleimomi #babysteps #keepmovingforward #standingunassisted #hypotonia #depthperception #visuallyimpaired #nr2f1 #bbsoas #autism #sensoryprocessingdisorder #cvi #onh #ona #developmentaldelay https://www.instagram.com/p/CE43gG6nkns/?igshid=1iuwlqr6hl

[emmahastwomoms]

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

[emmahastwomoms]

“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

[emmahastwomoms]

Rare Disease Day is this Sunday, February 28th!! Emma is one of less than 175 people with her genetic mutation and because of that there are so many unknowns and questions for her future. Spreading the word about her rare disease and all other rare diseases is so important for the future!! She will always by My Why. ⁣ ⁣ @nr2f1foundation @rarediseasedayofficial ⁣ ⁣ #emmaleimomi #mywhy #whyicareaboutrare #rarediseaseday #shareyourrare #careaboutrare #nr2f1 #nr2f1foundation #bbsoas #boschboonstraschaafopticatrophysyndrome #ona #opticnerveatrophy #onh #opticnervehypoplasia #cvi #corticalvisualimpairment #strabismus #hypotonia #developmentaldelay #spd #sensoryprocessingdisorder #asd #autism #oromotordysfunction #whitecane #visuallyimpaired #gtube #specialneeds https://www.instagram.com/p/CLsh-y0sY_b/?igshid=1fx07wqbcjgtl

[emmahastwomoms]

It’s #FeedingTubeAwarenessWeek so here are some reasons Emma got her g-tube. At 2 years old, after a year of feeding and speech therapy her feeding was still not progressing and she was falling into the “failure to thrive” category with her weight. We found that she has an abnormal swallow pattern and her severe sensory processing disorder causes her to not want anything beyond liquid in her mouth. The g-tube has allowed us to give her the nutrients she needs and keep her weight steady ❤️⁣ ⁣ #emmaleimomi #gtube #gtubebaby #gtubeawareness #feedingdisorder #dysphagia #oromotordysfunction #hypotonia #nr2f1 #bbsoas #cvi #ona #onh #sensoryprocessingdisorder #autism #autismspectrumdisorder #raredisease #geneticmutation #shareyourrare #countdowntorarediseaseday #careaboutrare https://www.instagram.com/p/CLDD1F4sAE2/?igshid=1rnua2557g8ua

[emmahastwomoms]

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

[emmahastwomoms]

This smile is what got us through 2020. She made huge strides in her development but that caused some major regressions along the way. This year we are going to keep moving forward and I for one can’t wait to see what 2021 holds for us. ⁣ ⁣ #emmaleimomi #mygirl #specialneeds #toddler #bbsoas #nr2f1 #autism #sensoryprocessingdisorder #visuallyimpaired #cvi #onh #ona #hypotonia #gtube #dysphagia #developmentaldelay #keepmovingforward #2021 #newyear https://www.instagram.com/p/CJmFoaoMCIX/?igshid=11g4qt19i1nwi

[emmahastwomoms]

This series is titled “Mom Imma Do Me Even Though You Need a Nice Picture for School.” I try to get at least one picture a day of this sweet face and lately we’ve noticed her larger than life personality showing through each and every day!!! These 2000s duck lips, “ugh are we done yet” looks, and sticking her tongue out while smiling because the flash is funny are what make my days worth while. This photo session was because they asked for a nice picture for the upcoming school holiday party and let me tell you, this kid did not care one bit and this mom did not get a picture to send in from this day. I think she knew it was for school and decided to sabotage me, which I’m leaning towards and am super proud of her for it!! ⁣ ⁣ #emmaleimomi #mygirl #thatface #minime #attitude #threenager #specialneeds #nr2f1 #bbsoas #boschboonstraschaafopticatrophysyndrome #CVI #ONH #ONA #SPD #sensoryprocessingdisorder #autism #hypotonia #gtube https://www.instagram.com/p/CIxEz6Ys9gS/?igshid=155871ixl44kh

[emmahastwomoms]

Halloween 2020 looks different but Emma’s school has made it so amazing by sending us fall and Halloween activities for the entire month and today we are ending it with a virtual Pre-School party with both in-person and virtual learners!!! It is so nice to see all of Emma’s schoolmates and feel like we are back to some “normalcy.” We have had music therapy, science, and story time and an all together amazing school day!! We are so grateful that Emma is able to attend @seeitourway so she can have all of the experiences and support she needs to learn and grow!!! ⁣ ⁣ #emmaleimomi #foundationforblindchildren #fbc #virtuallearning #preschool #virtualparty #halloween #halloweenparty #halloweencostume #RBG #notoriousrbg #ruthbaderginsburg #restinpower #idissent #feminist #nr2f1 #nr2f1foundation #bbsoas #cvi #onh #ona #hypotonia #autism #sensoryprocessingdisorder #gtube https://www.instagram.com/p/CG76BtIMGyO/?igshid=qzkixb8ynzli

[emmahastwomoms]

In October we wear Pink & cheer for our 49ers!!!! We have a family of Survivors and spend fall celebrating them!! ⁣ ⁣ #emmaleimomi #breastcancerawareness #breastcancer #familyofsurvivors #bca #brca #49ers #49ersfaithful #49ersnation #49ersfamily https://www.instagram.com/p/CF8XcN2svCp/?igshid=6edx87vjaqs1

[emmahastwomoms]

Since starting school Emma has learned to wave Bye when we are done with school or leaving and to use her communication cards. She has started to realize when we wave and say Bye that means we are done with what is going on. This means that my smart cookie has decided to start waving Bye in the middle of class because she doesn’t want to be in class anymore. Sometimes it’s not until the end, today it was 5 minutes in!! She has made so many improvements in her communication and though we can’t stop school because she waved Bye every time we still make sure to acknowledge her making a choice and communicating what she wants. ⁣ ⁣ #emmaleimomi #communication #pecscards #waving #bye #makingchoices #preschool #foundationforblindchildren #fbc #nr2f1 #bbsoas #cvi #onh #ona #spd #autism #hypotonia #developmentaldelay #specialneeds #specialneedfamily https://www.instagram.com/p/CFh14JpsHwQ/?igshid=1fllomm0cokdr

[emmahastwomoms]

Happy Grandparents Day to the amazing human beings Emma gets to call her grandparents. We are so lucky to have such supportive and wonderful grandparents in our lives!! #emmaleimomi #grandparentsday #weloveourgrandparents #tutu #tata #abuela #abuelo #greatgrandma #greatgrandpa #bisabuelo #grents #weloveyou https://www.instagram.com/p/CFFmDAnswEw/?igshid=ra9telkk1vdw

[emmahastwomoms]

My THREEnager is ready to take on the day!! It’s always a good day when Emma wakes up in a good mood 😄 Now for breakfast and some Dora before its time for school!! ⁣ ⁣ She’s staying to get used to her new routine of having school 4 days a week. It’s been a struggle but with all of the new tools we’ve been given we are seeing some amazing improvements in all aspects. She’s attempting to use her PECs to help us know what she wants and is even trying to stand unassisted. We are unbelievably relieved that Emma was able to get into the school of our choice and is able to be taught in a way that works with all 3 of her visual impairments and other special needs. ⁣ ⁣ #emmaleimomi #threenager #breakfast #doratheexplorer #timeforschool #fbc #foundationforblindchildren #preschool #specialneedspreschool #visualimpairment #cvi #onh #ona #nr2f1 #bbsoas #autism #sensoryprocessingdisorder #hypotonia #nonverbal #gtube #specialneeds #specialneedsmom #PT #OT #speechtherapy #virtuallearning #pecscards https://www.instagram.com/p/CEpC7PaM0zC/?igshid=qjyjh7rybuea

[emmahastwomoms]

This Polynesian princess with has been getting very bold and has decided to take a step unassisted in precarious situations (like on the couch). She has also been standing up in the middle of the room but once she realizes there isn’t something to hold onto she drops to the floor. She’s making progress every day and just gets cuter as she does it as well!! Her determination and resilience astound me and make her even more amazing!!! #emmaleimomi #polynesianprincess #missaloha #tongan #specialneeds #takingsteps #progress #bbsoas #nr2f1 #cvi #onh #ona #hypotonia #developmentaldelay #gtube #autism #sensoryprocessingdisorder #resilience #keepmovingforward https://www.instagram.com/p/CEhxlkWMPOs/?igshid=xivyvm2r72p8