Smiley 😍😍😍 the eyes are blue today! She’s keeping me on my toes in every way. Meeting is off until tomorrow. We couldn’t get all our team together today. She is trying out the twice a day shot at a very low dose. We could know very quickly it’s a horrible idea or it could take days to get her dosing just right or know if it’s working at all. Mark spoke to the company doing the trial on the pump and they would love to have Kitty! So if all else fails we have that in our back pocket. It is just a trial, so she would not get to keep it until it became available. If that’s the road we ended up on I pray it became available very quickly!!! #upsyndrome#theluckyfew#heartwarrior#trisomy21#downsyndrome#Kittystrong#IHateHIHA
Dalam tidur pun aku pinter gaya kan?
Entah aku lagi mimpi merenung dengan masa depanku??? Atau mimpi lagi terpukau dengan bidadari yang cantik dan baik hati yg selalu disebelahku dan merawatku dengan cinta kasih sayang tiada batas, membelaiku sambil mendoakanku, aahh... cantik dan penyayangnya bidadari itu.... Tangannya lembut dan hangat... Terlihat tersenyum manis terus, aku tidak pernah melihat dia menangis... Tapi kalo cerewet sih sering.... Haahhh cerewet??? Kok??? Pasti bidadarinya ada yg gangguin nih.... Aku kan manis... Siapa yg berani gangguin bidadariku yaa ??? 😱😷👶👶 #zaid#kecil#gapailahmimpi#setinggilangit#oraetlabora#downsyndrome#trisomy21#umur7 -8hari
One of our children, who shall remain nameless (hint: not the 2 year old!) went through a bad tantrum phase. It was hard on all of us and lasted longer than I would think is typical, but luckily it’s much better now. I read a few books on the topic and this suggestion was a game changer:
Sit side by side instead of looking directly at them. It’s less confrontational and they calm down more easily.
Even though he doesn’t have full fledged tantrums anymore, we still do this for any correctional talks. And never one to be left out, a little sidekick wedged her way in to get some of the talk too. 😂
(By the way, if anyone’s interested I can give the full tantrum-reducing steps that we took from the book. It wasn’t anything crazy but it worked well for us!) .
Minha mamã costuma dizer que eu gosto muito de festa. Antes de receber alta da UTI, minha titia Binha e minha «dinda» Bruna sempre ficavam arrumando meu berço e limpando o meu quarto. Todos os dias, era o mesmo ritual, na expectativa da minha chegada ao novo lar. Até que o dia chegou: foi minha primeira festa! Minha chegada em casa foi uma grande festa, titia Binha e "dinda" Bruna organizou tudo, fizeram bolo, docinhos e sagadinhos e tantas outras comidas, ornamentaram com bolas e cartazes e, tia Licia, tio Neto e vovô ajudaram na montagem. Meu primo Felipe também fazia as fotos. Relembrar essa chegada foi demais...e, veio meu primeiro Natal, recebi a visita de um Papai Noel muito especial: meu primo Lipinho (de Papai Noel só para mim). Uma diversidade de comidas, mas, eu só mamava.
Today is the first day of Hanukkah! May your holiday season be filled with love and light💛💙💛💙
New blog post: This One Moment. "Sometimes Down syndrome is the easiest thing about life. (I once thought that no problem would ever be bigger than her diagnosis. I was wrong.) And sometimes...Down syndrome provides a window to a new view I haven't considered before. A view that I really needed but didn't even think to ask for. Sometimes this view narrows ALL THE THINGS to the one breathtaking moment right in front of me that I would have otherwise missed. Grateful." #lifeisbetterwithyou#theluckyfew#trisomy21#downsyndromerocks (link in profile)
One of the most wonderful characteristics Dianna has is the ability to be captivated by something that would not hold the attention of most others her age for as long. I hope this will be a lifelong blessing.
Sometimes I think this is the characteristic that so many look down on in those who have Down syndrome or others who have different abilities. The world wants everyone to grow up and be independent and 'give back' to society.
I say that this is one of her greatest gifts to society, a lesson in slowing down, enjoying the little things, and having a childlike view of everything for much longer.