#rettsyndrome

MOST RECENT

Retts Review This already has 130 followers 💜 so I wanted to take a moment an introduce myself & my family for those who have no idea. My name is Ciara, my husband Jacob, our daughter Isis ( in front of me ) & our daughter Imelia. We try and live the most " normal " life as possible but as much as we hate it / love it....Rett Syndrome is our life. We are coming up on our 4 year diagnosis anniversary so I thought it was time to break out of my shell and welcome you into our world. I'll be reviewing items & places that works or doesn't work for us. I'll share our daily life... the good and the bad. So if you have questions, ask away I'll answer them 💜 Welcome to Retts Review This.



#rettsreviewthis #rettsyndrome #rettsyndromeawareness #family #specialneedsdaughter #specialneedsmom #tucson #arizona

This Thursday folks!
Reposting @rettuniversity:
...
"Alright gang, our next webinar is coming up. Join on Thursday with instructor Susan Norwell in the second part to our Modeling series. Can’t wait to see you!⠀

LIVE WEBINAR - Modeling Part 2 - Combining Symbols to Communicate Ideas.⠀

THURSDAY, APRIL 26, 2018⠀

5:30 – 6:30 PM PACIFIC⠀

7:30 – 8:30 PM CENTRAL⠀

8:30 – 9:30 PM EASTERN⠀

This live webinar will build upon the Modeling Part 1 webinar to extend communication and modeling with a focus on increasing the combination of symbols to convey a novel idea. High-tech options will be modeled for the slightly more advanced communicator. Participants will view videos that demonstrate how to model on an eye-gaze device utilizing my adapted SonoFlex pages and Snap + CoreFirst. All modeling will be embedded into the three avenues for language development LIVE Webinar - Modeling Part 2 https://buff.ly/2HpT3Hi⠀


#rettuniversity #rettsyndrome #rettgirl #girlpower2cure #modeling"

Alright gang, our next webinar is coming up. Join on Thursday with instructor Susan Norwell in the second part to our Modeling series. Can’t wait to see you!⠀

LIVE WEBINAR - Modeling Part 2 - Combining Symbols to Communicate Ideas.⠀

THURSDAY, APRIL 26, 2018⠀

5:30 – 6:30 PM PACIFIC⠀

7:30 – 8:30 PM CENTRAL⠀

8:30 – 9:30 PM EASTERN⠀

This live webinar will build upon the Modeling Part 1 webinar to extend communication and modeling with a focus on increasing the combination of symbols to convey a novel idea. High-tech options will be modeled for the slightly more advanced communicator. Participants will view videos that demonstrate how to model on an eye-gaze device utilizing my adapted SonoFlex pages and Snap + CoreFirst. All modeling will be embedded into the three avenues for language development LIVE Webinar - Modeling Part 2 https://buff.ly/2HpT3Hi⠀


#rettuniversity #rettsyndrome #rettgirl #girlpower2cure #modeling

HAPPY BIRTHDAY KALANI!!! Meet beautiful sisters Kalea left and Kalani on the right. Kalani has autism and turned 15 yesterday!! WE HOPE IT WAS AMAZING!! 💜💙 Special Needs Siblings of the Day!! 📸: @videosbyjoe !!
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🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
#specialneedssiblings #specialneedsparents #specialneedssister #specialneedsmoms #specialneedsdads #specialneedsbrothers #specialneedsfamilies #support #epilepsy #autism #downsyndrome #brothers #family #congenitalheartdefect #disability #disorder #dwarfism #wheelchair #therapy #sensory  #lupus #lyme #criduchat #angelmansyndrome #rettsyndrome #adhd #mitochondrialdisease #chargesyndrome #sotosyndrome #b12deficiency

People often forget the importance of mentality in creating success for oneself.
They go through the motions, but don't really see the results they want and then wonder why it's not working.

You need to have a positive mindset going into things! Believe you can do, believe that it will work, believe that the hard work and time dedicated to what you're doing will be worth it!!! Believe in yourself and act and think in a way that reflects that. You will get so far!

Playing for #FightingforFinley was such an incredible experience! @fembot_chi was so lucky to have a special guest/honorary Fembot (and lady of the hour) hop onto the stage with us, the one and only Miss Finley herself! I was so starstruck but wanted to dance so badly that I almost lost the bassline! (🆘) Her story is still being written, but being diagnosed with #RettSyndrome means that the first few chapters of life will be quite the uphill climb. This was just a very tiny way in which my band and I could help and it was truly an honor for all of us.

It’s Rett Clinic day for me! About 5 doctors are coming to see me today! Guess who is falling dead asleep when she gets home. 🙋🏼‍♀️
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#rettsyndrome #baltimore #kennedykrieger #rettclinic #longday #tooearly

We ran out of our first batch of starter kits while holidaying in Bunbury and Busselton, so it was all hands on deck when we got back today to catch up on orders and shipping! #madewithlove

تکرار پست محک-🏩مرکز پذیره‌نویسی سلول‌های بنیادی خون‌ساز محک
4000 تایی شد. گام بعدی‌مان در این مرکز رسیدن تعداد اهداکنندگان داوطلب به 5000 نفر است. ✋🏻 پس اگر شرایط اهدا را دارا هستید و می‌خواهید با روش تازه‌ای از نیکوکاری، شانس بهبودی تعداد بیشتری از کودکان مبتلا به سرطان ممکن شود، در این مرکز عضو شوید و یا این پیام را برای دوستان خود بفرستید تا آنها نیز به جمع اهدا کنندگان سلول‌های بنیادی خون‌ساز محک بپیوندند. ✅ در صورت داشتن شرایط عضویت، می‌توانید از طریق يكي از روش‌های زیر عضو این مرکز شوید. اطلاعات شما ثبت خواهد شد و برای هماهنگی دریافت نمونه با شما تماس خواهیم گرفت.✅ برای اطلاع از شرایط #عضویت در مرکز ورق بزنید. 🔸
ارسال عدد 400 به
شماره 200023540 از طریق پیامک 🔸مراجعه به وب‌سایت محک و تکمیل فرم ثبت‌نام ▫️لازم به ذكر است در حال حاضر امكان ثبت نمونه در شهرهاي تهران، كرج و شيراز وجود دارد. لذا داوطلبان گرامي در زمان ثبت نمونه بايد امكان حضور در بيمارستان محك (دارآباد) يا دفاتر باستان (خیابان جمهوری) و چیذر (میدان چیذر) در تهران یا دفاتر این مؤسسه در شهرهاي كرج و شيراز را داشته باشند. 📍هماهنگی ثبت نمونه در شیراز: 📞شماره تماس:
07132345600

تماس:شنبه تا چهارشنبه،ساعت 15-9
📍هماهنگی ثبت نمونه در کرج: 📞شماره تماس:
02634498537
تماس:شنبه تا چهارشنبه،ساعت 15-10 ▫️پینوشت: شرکت‌های بهمن موتور و بهمن دیزل در راستای اهداف خیرخواهانه خود هزینه ثبت ٥٠٠٠ نمونه اولیه برای ایجاد مرکز پذیره‌نویسی سلول‌های بنیادی خون‌ساز #محک را تأمین کرده‌اند.
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#بيمارستان #خيريه #اينجا_اميد_ادامه_دارد #كودك #سرطان_پايان_كودكي_نيست #اهداكننده #سلول_بنيادي
‏# #bonemarrowtransplant #transplantation #getonthelist #deletecancer #mahak #mahakcharity #mahakchildren #pediatriccancer #pediatrichospital #hope

#جازموریان #جازموریان_تنها_نیست #جازموریان_زنده_است #قلعه_گنج #کرمانشاه_تنها_نیست
#سندرم_رت #نگار_غلامی
#jazmourian
#jazmourian_is_not_alone
@s.slvt
#kermanshah_is_not_alone
@justnarges
#rettsyndrome
@_negar_golami_88

2 years old 😩😘😍😍😍 #rettsyndromeawareness #rettsyndrome #walkthejournie

Радость моя любимая, девочка сладкая, в 5 утра сегодня проснулась ☺️ Обожаю тебя, малышка 😍 У мамы настроение такое замечательное 😊 Мама любит раньше солнышка вставать 😅
Очень доброе утро, я бы сказала даже самое 😂
ПС друзья, спасибо, что откликнулись и помогли @chudo_mariiasha 🙏🏼 Вы у меня самые лучше ❤️ #самаяособеннаяизвсехособенных #синдромретта #rettsyndrome #instababies #fashionbaby #babyfashion #fashionkids #instakids #fashionkidsworld

Day 1 of Shaun Week!!!! That was challenging in a whole new way, but that's what I love about having so many different types of programs available to me!!!!
It feels amazing to be starting another program, even though it's a short one 😊💪🏼

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