As some of you know my family has been having a particularly difficult time the last few months. I want to say thank you to everyone who has supported us. If you sent food, or gift cards, or money you have no idea how much that has helped our family and we are so appreciative.

I wanted to share Willow's story with everyone who is interested. My 5 year old daughter had a virus around Christmas. Most of our family caught this virus and we all improved, but after a couple of days of improvement, Willow started to have headaches, fever, and vomiting. We took her back to the doctor twice and the second visit they told us her white blood cell count was very high and we needed to go to the ER. Once in the ER she became very disoriented. She was seeing things and grinding her teeth. I pushed them to order a head CT because of her altered mental status. On our way back from the CT Willow started having seizures. These sezuires were resistant to all the medications they tried. The doctors did multiple blood tests and lumbar punctures trying to figure out what was wrong. There were no immediate answers.

Willow was admitted to the PICU and was intubated. They then put her into a medically induced coma to stop her seizures. She had a brain MRI that showed encephalitis and brain lesions, but we still didn't know what was causing this to happen. For two weeks all the tests kept coming back negative and during that time the PICU doctors were treating her for every possible cause for the encephalitis until we could figure out the cause. The neurology team decided she needed plasma exchange so a vascular catheter was then placed in her jugular vein to start her treatments. The first treatment went well, and she started to show some improvement, but during the second treatment Willows heart stopped. They worked to resuscitate her for nearly 20 minutes, during which time they discovered she had a collection of blood around her heart. It turned out, when the catheter was placed for plasma exchange they punctured a small hole near the right atrium of her heart and blood had been collecting in her chest which caused her heart to stop. Once they drained the effusion they got her heart rhythm back and she went to surgery to repair the hole.

Willow spent the night I'm the cardiac ICU and then we were sent back to the PICU where the doctors were hesitant to continue the plasma exchange because of the heart complication. We waited another week for results to come back confirming she actually needed the plasma exchange. They finally removed her vascular catheter and two days later we got results back indicating Willow has an autoimmune disease called MOG, where basically your body makes an antibody that attacks the sheeth covering your nerves. The treatment for MOG is in fact plasma exchange so she had to have a second catheter placed in her groin to begin her treatments. At this point, Willow was showing some improvement so they tried to extubate her. The first time she failed and had to be reintubated because she was on too much medication to maintain her airway. They then began to wean her medications in hopes of waking her up enough that she could breathe on her own. A week later she was extubated again and she was able to get rid of the ventilator and breathe unassisted. Willow was waking up but could no longer walk, talk, or eat on her own. She could not hold up her head and she had limited movement of her arms and legs. Our baby went into the ER in January completely normal and was now waking up a month later unable to do any of the things she could do before.

A few days after extubation they moved us to the rehabilitation floor. Willow was doing as much physical therapy, occupational therapy, and speech therapy as her body could tolerate each day. She was making slow steady improvement, but it wasn't enough improvement to be admitted to inpatient rehab. They discharged us at the beginning of March and we brought Willow home. No one can ever truly prepare you for bringing your previously healthy child home from the hospital now in a wheelchair with a feeding tube. We do therapy at home everyday and she has outpatient therapy appointments multiple times a week. She is on 9 medications for sezuires but she still has focal sezuires daily. Despite the sezuires she has made great improvements since we've gotten home. She's holding up her head better. She's sitting up better. Willow is getting very good with her right hand and starting to use her pointer finger again. She is slowly starting to use her left side again and she is swallowing now, neither of which she was doing when we left the hospital. She is also sporadically saying words.

The doctors expect her to continue to improve over the next 2 years and are hopeful that she can make a full recovery, although that is not guaranteed. We are very thankful to still have her with us because we almost lost her multiple times over those two months in the hospital. She has a very long road ahead of her. I cannot count the times the doctors have told us this is a marathon and not a sprint.

If you've made it this far thank you for reading her story. If you want to do something to help us you can donate to her gofundme. I was trying very hard to avoid making one and we have been scraping by on one salary and the kindness of friends and family for the past few months waiting on our emergency insurance policy to pay out. Unfortunately Aetna has been very difficult with us and every time we submit a claim with what we think are the required documents they ask us for something different.

I will try to keep everyone updated on Willow's progress. Thank you to everyone who has thought of us or prayed for Willow during this time. It means a lot to know we have your support.