What a beautiful journey we have been given! As you all know, our sweet girl passed away in the early morning hours of February 4th. While her sickness was very scary at times, we also enjoyed some amazing moments with her; filled with the love of all who surrounded us.
What happened to Ellie?
Along with the Coronavirus and presumed pneumonia, Ellie's left lung collapsed. We almost lost her before deciding to intubate for a second time; giving her the best shot at moving things along and opening her lung back up. After days and days of intensive treatments, we saw little improvement to her lung health. We could continue on with the treatments that our little girl disliked so much for possibly weeks, or we could let nature take it's course. We took Ellie's lead and followed our hearts. No more treatments, just love. It was absolute bliss.
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| She enjoyed this treatment so much. Gentle hands and the disco ball sparkling put her to sleep. |
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| She enjoyed many visitors; especially all of her wonderful grandparents, aunts and uncles. |
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| Lots of love from big brother. |
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| A little dress up. |
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| Good talks with Daddy. |
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| The SUPERBOWL! For those of you who don't know, football with Daddy was one of Bellsy's favorite times. |
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| Cuddle time with Mommy. |
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| The last photos I have of our girl are ones exactly like this. The love between these two souls is so incredibly inspiring. |
Primary Children's Hospital
This place is truly amazing! It felt like home and the staff became our family; taking excellent care of not only our precious girl but also my husband and I, Ethan, and the incredible amount of visitors that came to see us. We are forever grateful to all the nurses, doctors, respiratory therapists, housekeepers, etc that played a part in the care of Ellie and our family. Thank you to the Rainbow Kids team, for talking us through our goals for Ellie and being such a huge support. Thank you, Child Life Specialists, for coming up with fun activities for Ethan and cherished gifts for our family.
And thank you to the beautiful musical therapists who wrote and sang this cherished song about Ellie; using our words:
Even in those last precious days, she continued to comfort us all with her wise and beautiful bright eyes. Thank you, Ellie, for giving us so much and filling our hearts with pure love to last a lifetime.
We want you all to know how touched we are by your support and love for us and our sweet girl. We will continue this journey of love throughout our lives in honor of Ellie. Please tell someone you know about her story and SMA. We know we can make a difference together by raising awareness for this disorder. With all of our hearts, we thank you.
