#oromotordysfunction

[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]

It’s Day 2 of Tube Feeding Awareness Week so here is a little bit of Emma’s #tubiejourney⁣ ⁣ 2018 was a hard year for us with all of the unknowns we had with Emma. One of her biggest/hardest issues she had was her inability to eat and her food regressions that made it so she didn’t gain weight for over 4 months at a time (and this happened twice that year). Everything came to a head when we learned that we were to the point of talking about a feeding tube. This conversation happened a couple of times throughout the year but kept getting pushed to the back burner so the same thing happened in our minds. After many discussions and research we decided it was the best thing for Emma to get her out of the “failure to thrive” situation she was in. ⁣ ⁣ On December 11th, Emma had her g-tube placed and it was honestly one of the best decisions we have made for her. Because of her tube, she has gained weight and is back in a good weight ratio. She has now gone from getting on average 30% of her daily nutrition and 40% of her daily water intake to now meeting both at 100%. For us as parents knowing that she is getting back to a good place has made us feel even more right in our decision. Her energy is up and we are seeing her make improvements in other areas because of it. I’m so thankful to our amazing friends who went through similar situations that took the time to talk us through it and gave us the much needed wisdom and knowledge of the before and after and it was invaluable.⁣ ⁣ #emmaleimomi #babygirl #feedingtubeawarenessweek #feedingtubeawareness #gtube #gtubelife #gtubemom #tubie #cutiewithatubie #tubiemom #tubielife #tubiestrong #feedingtube #pediasure #enteraliteinfinitypump #dysphagia #eatingdisorder #oromotordysfunction #hypotonia #sensoryprocessingdisorder #boschboonstraschaafopticatrophysyndrome #autismspectrumdisorder #specialneeds #specialneedslife #specialneedsmom https://www.instagram.com/p/B8bpdJGFO7r/?igshid=d5glgwdt8otc

[emmahastwomoms]

This girl had some pre-op imaging today and did such a great job!! Unfortunately she is getting used to the hospital, but it does mean she does well with new things when she needs them done. We are in countdown mode for surgery and prepping her for our new gtube life. She is doing so well with her new backpack. We’ve been slowly incorporating her wearing a backpack into her day to help the transition when she gets her gtube in a couple of weeks. If you have any other suggestions throw them our way, we will take all the help we can get!! ⁣ ⁣ #emmaleimomi #specialneedmomlife #specialneedsmoms #specialneedtoddler #gtubelife #tubie #gtubetoddler #nr2f1 #boschboonstraschaafopticatrophysyndrome #spd #sensoryprocessingdisorder #asd #dysphagia #oromotordysfunction #developmentallydelayed #prepping #gtubesurgery #mybravegirl #babygirl https://www.instagram.com/p/B5T3JCgF7oh/?igshid=13erd6nc6i49y

[emmahastwomoms]

We’ve been quiet about everything going on lately because it was a lot to take in and digest (pun intended). Head over to the blog to see what’s been going on with Emma and what our near future looks like emmahastwomoms.com ⁣ #emmaleimomi #beautiful #emmahastowmoms #linkinbio #newblogpost #newblog #tubieornottubie #tubietoddler #gtube #gtubebaby #gtubetoddler #gettingthemcalories #surgery #nr2f1 #boschboonstraschaafopticatrophysyndrome #sensoryprocessingdisorder #spd #asd #dysphagia #oromotordysfunction #specialneeds #specialneedsmom #specialneedstoddler #twomoms #twomomfamily #lgbtfamily #lgbtspecialneeds https://www.instagram.com/p/B447UmRFDBL/?igshid=ccowh8h6bpjp

[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 was all smiles because she had her first button change and now we get to use all of our super cute tubie pads instead of having to tape it down daily! I’m excited because even the super sensitive tape and her skin aren’t friends and I also love trying to help the environment with reusable products!! We hope everyone stays safe in the craziness of life right now and wash them hands or stay away from this medically fragile kiddo!! #emmaleimomi #babysmiles #gtube #gtubelife #tubie #tubietoddler #tubiepad #tubiechange #tubiemom #tubielife #medicallyfragile #medicallyfragilekiddo #mygirl #geneticmutation #nr2f1 #bbsoas #onh #ona #cvi #asd #spd #hypotonia #oromotordysfunction #developmentdelay #developmentaldisability #invisibledisability https://www.instagram.com/p/B9sySk9lsgu/?igshid=y2ptts6j5tj2