Miller Family Update

Emmalee rapidly spiked a 104 fever this morning and slept off and on most of the day. She woke up too weak to stand and meds would not bring down her temperature. After some tests, it is determined that the strongest oral meds were unable to get rid of her urinary track infection from April 10th and has been doing some damage to her kidneys and right lung. She is being admitted for strong IV antibiotics and fluids. We are here till they can get this under control. She has had no indications of sickness before this morning. The Drs. are stumped at how resilient and calm she is. They have said she is too sick to fight but with hypotonia, it’s hard to discern between what is her condition and what isn’t. Her body does everything at a different pace and we call it “Emmalee’s timing.” I say she has a high tolerance for pain and is just incredibly strong. They were able to get an Iv in the first try. 🙏🏻I cannot express how amazing this kiddo is. She is just a little fighter and handles everything life throws at her with grace, love, patience, smiles and “Boops” (she pokes you and says “boop” and it makes everyone smile every time.) The x-ray tech fell madly in love with her and practically gave her every toy in the toy bin. Lol. Her nurses keep bringing stickers, bubbles, popping in to say hello and are just in love with her sweetness saying “she’s magnetic.” How lucky we are to have her, our little

We are still in the Hospital 😔 Emmalee still can’t shake the fever when the meds wear off. She refuses to eat and drink. They are still trying to determine if these Iv antibiotics are working. They did an ultrasound of her kidneys and bladder that came back normal which is such great news! No damage and no abnormalities. We just need to get her nutritionally stable and help her body fight this infection. She was able to get up for a bit and walk and play. She gets tired quickly and has been sleeping quite a bit. Hoping she turns the corner soon.

Emmalee woke up and we had Feeding therapy. We had to coax her through EVERY. SINGLE. BITE. She hadn’t eaten anything since Sunday. It exhausted her so much that she crashed afterward and slept for 5 hours. She woke up feeling quite perky and we went to the playroom and took walks on the floor. Because she had pulled out her Iv accidentally, she had to receive her antibiotics as a shot in both thighs. She was sooooooo unhappy and offended.

Once she was calm, we were free to go home. She was in such a bad mood but was so happy to be home. A nice warm bubble bath and snuggles made everything better. She has been a trooper today but is still very tired. We were able to get back to the hospital to pick up her oral antibiotics. We have a follow up with her pediatrician next week and have an appointment to be seen by a GI specialist at Doernbecker to address her feeding disorder and discuss placing a feeding tube to help her gain weight and give her the nutrition her body needs to keep her organs functioning properly.