Emma’s story goes back to December 2018. She was just over a month away from turning 4 years old, and she was a healthy and happy girl. Then she got really sick with what we thought was just “a stomach bug”, but her symptoms quickly worsened leading to the finding that she had an E. coli infection. It was the bad kind that can cause Hemolytic Uremic Syndrome, which it did. Emma was critically ill.
That’s when things got worse; she also had a secondary infection which led to septic shock which led to cardiac arrest. By some miracle, she made it through and was put on ECMO. While on ECMO, she suffered her strokes including a major one in the right basal ganglia. She spent 4 months at Children’s Hospital of Wisconsin during which she fought through so much - dialysis did to kidney failure, seizures, multiple blood transfusions, colostomy surgery, g tube placement, 3 neurosurgery procedures, becoming diabetic... the list goes on!
She spent 2 months at Shirley Ryan AbilityLab for intense inpatient therapy. After being gone for 6 months, we finally came home. While we were so grateful to be home and to have our sweet Emma, we were also scared and overwhelmed. The Emma we brought home could no longer talk, walk, or eat by mouth. She had just gained enough strength and coordination to sit up on her own for more than a few minutes. We were seeing VERY limited movement from her left leg and arm. The outlook given to us had been bleak; they were doubtful she would ever be able to gain much function in her left side, and her right side was expected to have some weakness too.
We’ve been home now for almost a full year. She has had 2-3 weekly sessions of each PT, OT, and speech therapy as well as countless appointments with her team of specialists. She has made such incredible progress! She can now scoot around on the floor, ride an adaptive trike, use her left leg almost as well as her right, pull to standing and up onto the couch, making more noises, taking steps, smiling and giggling, and trying tastes of some foods. It has been a long and difficult year and a half, but Emma’s hard work and determination keep us going. She has made incredible strides, and we remain cautiously optimistic that this will continue.
I still have my own moments of weakness especially when I see videos and pictures of Emma from before she got sick. I miss her silly songs and dancing, hearing her say “I love you”, seeing her run and play with her friends, and her excitement for learning at daycare. I allow myself to feel this sadness, but then I wipe away my tears and keep on going. It took me a while to accept that it’s okay to feel blessed and thankful that she survived and is here with us while also missing the life she had before her sickness and stroke and feeling sad and upset about how unfair it is for our sweet girl.
Emma has always been a spunky, energetic, determined, and passionate little girl. We have seen this shine through as she pushes forward in her recovery process. She has been, and continues to be, an inspiration to so many around her. I hope that she can also bring hope and smiles to some of you! Our warriors are capable of so much and surprise us with their incredible perseverance every day! 💜
That’s when things got worse; she also had a secondary infection which led to septic shock which led to cardiac arrest. By some miracle, she made it through and was put on ECMO. While on ECMO, she suffered her strokes including a major one in the right basal ganglia. She spent 4 months at Children’s Hospital of Wisconsin during which she fought through so much - dialysis did to kidney failure, seizures, multiple blood transfusions, colostomy surgery, g tube placement, 3 neurosurgery procedures, becoming diabetic... the list goes on!
She spent 2 months at Shirley Ryan AbilityLab for intense inpatient therapy. After being gone for 6 months, we finally came home. While we were so grateful to be home and to have our sweet Emma, we were also scared and overwhelmed. The Emma we brought home could no longer talk, walk, or eat by mouth. She had just gained enough strength and coordination to sit up on her own for more than a few minutes. We were seeing VERY limited movement from her left leg and arm. The outlook given to us had been bleak; they were doubtful she would ever be able to gain much function in her left side, and her right side was expected to have some weakness too.
We’ve been home now for almost a full year. She has had 2-3 weekly sessions of each PT, OT, and speech therapy as well as countless appointments with her team of specialists. She has made such incredible progress! She can now scoot around on the floor, ride an adaptive trike, use her left leg almost as well as her right, pull to standing and up onto the couch, making more noises, taking steps, smiling and giggling, and trying tastes of some foods. It has been a long and difficult year and a half, but Emma’s hard work and determination keep us going. She has made incredible strides, and we remain cautiously optimistic that this will continue.
I still have my own moments of weakness especially when I see videos and pictures of Emma from before she got sick. I miss her silly songs and dancing, hearing her say “I love you”, seeing her run and play with her friends, and her excitement for learning at daycare. I allow myself to feel this sadness, but then I wipe away my tears and keep on going. It took me a while to accept that it’s okay to feel blessed and thankful that she survived and is here with us while also missing the life she had before her sickness and stroke and feeling sad and upset about how unfair it is for our sweet girl.
Emma has always been a spunky, energetic, determined, and passionate little girl. We have seen this shine through as she pushes forward in her recovery process. She has been, and continues to be, an inspiration to so many around her. I hope that she can also bring hope and smiles to some of you! Our warriors are capable of so much and surprise us with their incredible perseverance every day! 💜
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