I read this blog post today and it completely captured what I felt about Belle.
It was really beautiful and I think relevant not just to SN kids but life in general.
Life with holoprosencephaly
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- Miracles
- Early Expiration Date
- Back to Blogging
- Time to get back in shape. Oh how I missed this, its been months!
- Good morning. Look who's feeling much much better :-)
- Feeling better!!
- At icu now. Doctors trying to figure out why Nathans having these problems. He is awake and watching spider man. Every time we take off the oxygen he desats, so still have a ways to go. Thanks for your prayers!!!! Theyre definitely helping!
- Seems the helium is working. A few minutes ago they were talking about intubation, now the doctor came in and said hes not sure he even needs to go to ICU. Hes awake and his breaths are much deeper Prayers are working! Wow this has been one of the scariest days of my life.
- Still struggling to breathe, cant seem to keep his 02 sats. They are going to try giving him helium with oxygen.
- Stable now. Requiring oxygen. Theyre admitting him to ICU.
- Tons of doctors rushing in worse than we thought pray pray pray
- Back at the hospital, pneumonia we're thinking.
- Up in the Air
- Trying Something New
- Ready for Mothers Day lunch.
- Enjoying the new kitchen :-)
- Cheese!
- Having a blast at Chuck E Cheese with school mates!
- Prayers are working!
- Bounce house!!!
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