emmahastwomoms

[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]

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

Emma’s first time finger painting!! Today was a big win for sensory and fine motor skills!!! We’ve tried finger painting with Emma for years but she is not a fan of liquids and other textures on her hands so it’s never really happened. Monday’s are always hard with going back to school but add her OT session she’s usually a lot more reserved when it comes to arts and crafts. Today something was different and the colors we chose with her Braille paper just made that much of a difference for her to want to explore!! We are beyond proud of her for this first painting and can’t wait for more in the future!! ⁣ ⁣ #emmaleimomi #preschool #developmentalpreschool #foundationforblindchildren #fbc @seeitourway #artsandcrafts #fingerpainting #braille #occupationaltherapy #tacticallydefensive #sensoryplay #sensoryprocessingdisorder #autismspectrumdisorder #asd #boschboonstraschaafopticatrophysyndrome #bbsoas #nr2f1 #hypotonia #opticnervehypoplasia #opticnerveatrophy #corticalvisualimpairment #hypotonia #developmentaldelay https://www.instagram.com/p/CN3j_yaHPTd/?igshid=6jiojto44k0x

[emmahastwomoms]

Happy Easter!! https://www.instagram.com/p/CNQNeIesLgc/?igshid=a3jinejee3fc

[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]

Emma got a new accessory!!! This is her white cane also known as Caney. Emma had an evaluation for a new therapy called Orientation & Mobility (O&M) to help her move around the world. With this therapy comes her new white cane. Since she is so tactically defensive we are starting slow and just getting her used to it being in her life throughout the day. We bring it from room to room, when we leave the house it goes with us, and we give it to her to just touch and get used to the new texture of the leather handle. This new therapy will help her navigate around the world. We are excited to see how she does navigating the house and how it will help her have less injuries by walking into everything below her eye level. ⁣ ⁣ #emmaleimomi #mygirl #newaccesories #whitecane #orientationandmobility #pt #ot #bbsoas #nr2f1 #cvi #corticalvisualimpairment #onh #opticnervehypoplasia #ona #opticnerveatrophy #strabismus #visuallyimpaired #lowvision #autismawareness #sensoryprocessingdisorder #hypotonia #gtube #specialneeds #raredisease #rarediseaseday2021 https://www.instagram.com/p/CLYDbbNsemR/?igshid=v97ez1a5nb3h

[emmahastwomoms]

My forever Valentine’s!! We took a drive to flagstaff to see the snow. Emma was not a fan, but she did great in the car the whole round trip. #happyvalentinesday #myforevervalentine https://www.instagram.com/p/CLS1UCeM9D9/?igshid=tldfl26dja4a

[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]

February 28, 2021 is Rare Disease Day so we are gearing up all month in our stories with the ABCs of Rare associated with Emma’s rare disease Bosch Boonstra Schaaf Optic Atrophy! This genetic mutation on the NR2F1 gene is what makes Emma so special. Her mutation affects her vision, speech, sensory, motor functions, cognitive functions, eating, digestion, muscles, and emotions (so Every part of her)!! There are around 150 people diagnosed in the world and we learn new things with each diagnosis. Emma’s path has had many bumps, roadblocks, construction, and forks in the road but we are lucky to have an awesome team of doctors, preschool therapists, rare disease friends, and family who have helped us along the way. ⁣ ⁣ #emmaleimomi #countdowntorarediseaseday #rarediseaseawareness #bbsoas #bbsoasawareness #nr2f1 #boschboonstraschaafopticatrophysyndrome #geneticmutation #ona #onh #cvi #hypotonia #autism #sensoryprocessingdisorder #feedingdisorder #gtube #specialneeds #rarediseaseday #foundationforblindchildren @seeitourway @nr2f1foundation https://www.instagram.com/p/CKzU_4qs563/?igshid=19pd1l9irztvz

[emmahastwomoms]

Today is a good day. We watched as Kamala Harris, a woman of color, took the oath to become our Vice President. We watched as Joe Biden took the oath to become our President. A lot of work needs to happen within our government but we are officially one step closer to the America I want to raise our daughter in. https://www.instagram.com/p/CKR2_VzMKxx/?igshid=dvkmtxm4u755

[emmahastwomoms]

Happy Birthday Mama!! Emma and I love you so much. https://www.instagram.com/p/CJ98PStMZ8r/?igshid=1qtkosseq3nnm

[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]

It’s World Braille Day today!! Learning Braille has been one of the hardest things I’ve done, both learning each letter and trying to read it. We are so lucky that Emma has so many resources through her amazing school @seeitourway and we can incorporate Braille into our every day lives with labels for objects and books that have been transcribed into Braille. ⁣ ⁣ #worldbrailleday #braille #visuallyimpaired #bbsoas #nr2f1 #opticnerveatrophy #opticnervehypoplasia #corticalvisualimpairment #specialneeds #foundationforblindchildren https://www.instagram.com/p/CJop_i_M7ij/?igshid=jsbd2tzhcc2n

[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]

Merry Christmas Eve from our family to yours!! https://www.instagram.com/p/CJM3KMTsERF/?igshid=l6x5zzvwmviw

[emmahastwomoms]

Emma received a special letter from Santa this year and to make it even more special it arrived with a copy in braille as well!!! We are so lucky to have amazing resources from @seeitourway to help ensure Emma has a special and accessible Christmas!!! #emmaleimomi #letterfromsanta #santaclaus #merrychristmas #happyholidays #holidayseason #accessiblechristmas #specialneeds #bbsoas #nr2f1 #CVI #ONA #ONH #sensoryprocessingdisorder #autism #hypotonia #gtube #developmentaldelay #nonverbal https://www.instagram.com/p/CJCBCfusrPB/?igshid=etxx3ipa75wt

[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