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#costellosyndrome

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Daisy's lovely, kind, sensitive big brother sat with her in the hospital today so that I could join the Women's March in London. I am so aware that we are blessed in this country with a healthcare system that is free at the point of need. Daisy owes her life to our wonderful (and yes, imperfect) NHS, she has had treatment and care that must now run into 5 figures yet we have not paid a penny. I know many of my friends in the USA who care for children with complex needs and worry about the impact of the change of policy on their ability to continue to afford healthcare for their children. It was important for me to March today to send a message to my friends in the US who are chronically sick or disabled and their Carers that I am with them and I hear them. Daisy wore a pink hat in solidarity too, we never take for granted the excellent healthcare she receives. Yes, it's not perfect but thank goodness we have it and all I have to worry about is caring for Daisy, not how I will pay for her care.@stephnimmo #costellosyndrome

I have an extra special big brother who has given me opportunities to love, serve, and laugh like I never could have otherwise. He's also opened my world up to an incredible group of people that I'm lucky to call friends. I love all of these sweet faces. Thanks for an amazing conference in Florida, and I'll see everyone in Baltimore! #costellosyndrome #costellosyndromeconference2017

#Repost @anahita.avalos ・・・
A hard morning following a very hard night.
During 2010 we had a few stressful months because of a  mysterious stomach pain.Ulysses would complain night and day and we ended up seeing all sorts of doctors and doing various scans and xrays without never finding out what was wrong with him.Things got progressively better all by themselves like it often happens with Ulysses' troubles...#familyphotographynow #fpnmealtime #costellosyndrome

The amount of love that can make the world go round is sometimes as simple as a smile. #teamkenz #kenzinspiration #costellosyndrome #heaven is where our #heart is......

Seca mi bailarina🙈💜 #sindromedecostello #costellosyndrome

I cannot believe she is almost 4! Blessed beyond measure to be her mommy! The mountains we have climbed and the struggles we have faced are nothing when I see the sweet smile on her face! #teamkatibug #rarediseaseawareness #rarediseaserockstar #costellosyndrome #blessedlife

God helg folkens 🙋🏼#norskukeblad #costellosyndrome #minJente

Mar and dad. Dominican Republic
RepostBy @omarvicontreras: "#Marecita se levanta en despeine... y ahí vienen mis canas 👴🏼😂" (via #Quick reposter @AppsKottage) #costellosyndrome

MOST RECENT

Théo 17mths and mum Belgium @aurelielie3 #costellosyndrome

One more appointment for the day! Only a few more hours to go! Got to catch up with strangers that know my son, Joey's favorite doctors and nurses, and some special needs parents and friends. Joey, who I have decided is Wolfsons royalty, is passed out after socializing all morning.
#wolfsonsroyalty #wolfsonschildrenshospital #costellosyndrome #joeycsjourney #funtobeone #teamjoeydavid #thepopularkids #drappointmentflow #cancerfreekids #raregeneticdisorders #raredisease

My happy place will always be #caregiver #specialneedskids #family #love these #littles #teamkenz #costellosyndrome pictures are 3 years old. Feels like yesterday. Humbled to have had time with this precious kiddo. She and her family have shown me how to love through every triumph and trial in my life. Started with group homes and private care now headed towards PEDS Hospice and Emergency medicine. #caregiver - #CNA - #LPN - #RN2017 #goalcrushing and always remembering where I've come from.

Mar and dad. Dominican Republic
RepostBy @omarvicontreras: "#Marecita se levanta en despeine... y ahí vienen mis canas 👴🏼😂" (via #Quick reposter @AppsKottage) #costellosyndrome

Please lift this tiny girl up today! She was so excited but so anxious about school this morning! She is so happy to be back in her "school clothes" and in a familiar place with people that were so excited to see her back! We are praying for an easy transition and a great year! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #FirstDayTake2

RepostBy @_ojoscolormiel: "Felicidad😍💕 #chinita #sindromechile" (via #Quick reposter @AppsKottage) #costellosyndrome

RepostBy @mommy2kati: "This day has been exhausting... emotionally, mentally, physically and even spiritually! I understand the thought process behind not being able to pour from an empty cup! I am officially tired... all of the women in me are tired! And just for the record, the reason I work so hard to advocate for my child and make sure she has the most "normal" life possible is simply because I am her mom! I am not completely sure how any parent could sleep at night knowing they are not doing everything in their power to make sure their child is living life at the absolute peak of their polential. God continues to provide for the needs of my tiny human by opening and closing doors that are needed to ensure she is loved, protected, and developing at an age appropriate level.

All of Kati's appointments went really well today... we are blessed. There was some minor area of concern/"debris" on Kati's bladder that will be checked closely at her next cancer screening. We will be praying hard that whatever this is will be gone in December when we go for our last ultrasound of 2017. In the meantime we will just be thankful for another day filled with barbies and baby dolls and giggles and YouTube videos! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #SpecialNeedsMommy #becauseihaveto #mytinyhuman #adventuresinthelifeofkati #momentbymoment #onefootinfrontoftheother" (via #Quick reposter @AppsKottage)

This day has been exhausting... emotionally, mentally, physically and even spiritually! I understand the thought process behind not being able to pour from an empty cup! I am officially tired... all of the women in me are tired! And just for the record, the reason I work so hard to advocate for my child and make sure she has the most "normal" life possible is simply because I am her mom! I am not completely sure how any parent could sleep at night knowing they are not doing everything in their power to make sure their child is living life at the absolute peak of their polential. God continues to provide for the needs of my tiny human by opening and closing doors that are needed to ensure she is loved, protected, and developing at an age appropriate level.

All of Kati's appointments went really well today... we are blessed. There was some minor area of concern/"debris" on Kati's bladder that will be checked closely at her next cancer screening. We will be praying hard that whatever this is will be gone in December when we go for our last ultrasound of 2017. In the meantime we will just be thankful for another day filled with barbies and baby dolls and giggles and YouTube videos! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #SpecialNeedsMommy #becauseihaveto #mytinyhuman #adventuresinthelifeofkati #momentbymoment #onefootinfrontoftheother

Today is jammed packed with mountains that I cannot move, but my Jesus can! So thankful for that reality! I would really appreciate your prayers today as we handle lots of important Tiny Human things! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #WatchThatMountainMove #SweetJesus #FoundMyPeace #momentbymoment

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