A life worth living
Mimi is our little princess who rocks her extra chromosome! Mimi has a rare genetic condition called Trisomy18. Doctors said Mimi will not live Past birth! On July 1st of 2016, Mimi was born 5 weeks early weighing in at just about 3 lbs! Mimi was born alive and well. To the shock of all the attending doctors! As tiny as she was, she showed us she wants to live! As her parents, we joined in on her fight and advocated on her behalf! It was a tough ride! But we stood steady and strong for what we felt was right .. help our little girl live! Although most of the "other side" felt that Mimi will never lead a regular life, and why to put her through this, we knew and believed, any life regardless of abilities is worth living! We will love and accept her challenges and help her grow with them!
Living with Trisomy 18
After a long 6 months in hospital, Mimi was finally discharged from NICU. Our excitement was short-lived since she was back in hospital 2 weeks later with a respiratory illness which almost took her life! Mimi got her trach tube then, and we hoped for more stability! Mimi recovered beautifully and did exceptionally well with her new addition. The trach tube! We then faced yet another very difficult decision...when Mimi was ready for discharge 3 months later ( she was 9 months old then) we had to decide how to bring Mimi home. Mimi is number 6 in our family, and with not the best nursing agency's around our area we felt bringing Mimi home will take a huge toll on our other children. We decided on placing Mimi in a children's home and rehab center. We combed through our area to find the best suitable place for our dear darling daughter! We wanted something close so we can visit regularly, and be on top of her care, yet we didn't want to compromise on the best care for her!! We found it!! With a mix of emotions, we handed them our child!! Mimi adjusted so nicely!! She is flourishing and blooming beyond our expectations!! Yes, there are days when it's so tough and we wish Mimi's home with us, and then there are days where we are happy and content with our decision...
And this is where I would love to spread more awareness. Sometimes we have to make a choice which is so against our nature and put our feelings aside and do what's best for our kids! Of course, I want Mimi home, but with her medical needs and the day to day needs of the other children in our family, our best option was to place Mimi in a children's home. So instead we adapted her home into our home! It's only a 35 min drive from our house. We're there quite often, we shop for her clothing and she's the best-dressed kid in town! Of course, we still advocate for her, as any parent would do! Mimi is getting the best care and therapies, she is growing so nicely! Mimi now wears BAHA hearing aids to help her hear better, and she surprises us every day with what she can do!! Every milestone she reaches, as small as it may seem to others, is celebrated with great excitement! We never thought we would travel down this bumpy rocky road and still smile as we do it! Yes, it's tough, but we are tougher! Follow Mimi @mighty_mims