#spinabifidastrong

MOST RECENT

Tomorrow morning bright and early this girl will be going into surgery #17.
17 surgeries.
While I know the drill by now and I trust the surgeon and the surgery time- there's always a bit of anxiety on surgery days.

Even simple surgeries can have issues. Anesthesia always carries a risk. However, even with only doing necessary surgeries for health and happiness, somehow tomorrow I'm sending her into an OR for the 17th time. I'm trusting in the surgeon and his team to make sure my girl comes back out of the OR happy and healthy. Trusting in God that he will get us through these next 24 hours and then the next six weeks of bed rest.
While we are incredibly blessed that this is only her 17th surgery and she's almost ten(we have friends in the SB community who have had dozens of surgeries and are younger) I still wish it wasn't necessary. Hopefully the rest of this year is surgery free after tomorrow!
Prayers, good wishes, etc are appreciated as we go through tomorrow and the next weeks of healing, bedrest and follow up appointments. (Surgery #18 will be the beginning of 2019 to remove hardware in her hips)
#spinabifidastrong #newhaircut #spinabifida #wheeliecoolkid #surgery #faith #prayers

⭐️Before our Washington, DC trip there were only 3 names on this Spina Bifida caucus. Now look at them all! These names have been added to show support for what we were advocating for. I’m so excited to see our efforts come to fruition! ⭐️💪🏻 #spinabeautiful #spinabifida #spinabifidawarrior #spinabifidastrong #spinabifidaawareness #differentlylabeled #advocate #grateful #wedidit

Quick trip to Walmart because this boy earned underwear! It seems like such a simple thing to be excited to buy a three-year-old underwear but this is a day I didn’t think would come, ever. After multiple times over the course of the last couple weeks of telling me when he had to go we went on the toilet and not in his diaper.
We may have a neurogenic bladder, But right now he’s rocking his bowel program with patience and consistency. #pottytraining #dinosaurundies #spinabifida #spinabifidastrong #spinabifidawarrior #alwaysimpressingme #happymommy

re coating my push-rims for a better grip to keep me from slipping!! #hotmess #itsnoteasy #gorillaglueeverywhere #ingenium #racingwheelchair #spinabifidastrong #teamwork

H A P P Y P O S T ❄️
• The cutest little fairy, a custom order from the AMAZING Gemma @lottylollipop !! We designed this little cutie together to remember Leo and I ordered 3, for me and his 2 grandmas - and it’s more perfect than I could imagine. • The snowflake card made a lump in my throat because that’s what he is and always will be, beautiful, complex and different ❄️💙
• Gemma also (very!) kindly gifted me this beautiful angel to go alongside my Leo fairy and watch over him. Thank you so much lovely lady, I will treasure them.
(His scan in the background though... ❤️) #myangel

5 years ago today I met a very special actress who I adore and look up to. Julie Andrews is a kind hearted, gracious, warm and practically perfect in every way. I still can’t believe I have met this beautiful lady. .
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#myeverydaymagic #posttheordinary #ladyboss #postthepeople #bedeeplyrooted #disabledandcute #health #spinabifidaawareness #disability #spinabifidastrong #spoonie #disabilitypride #warrior #disabilityawareness #invisibleillness #hydrocephalus #chronicillness #hydrocephalusawareness #savedbygrace #praisehim #hydrogirl #blessedlife #livehealthy #differentabilities #julieandrews #admire #blessed

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