Support Taelynn's Medical Journey

My granddaughter was born on August 30, 2024. Taelynn was a perfect little bundle with spitfire red hair. Everything was moving along perfectly, then on December 26th, her parents were called to the daycare for possible seizure activity. This has now turned into numerous medical teams, hospital stays, physical, speech, and occupational therapies, EEGs, and many more I am sure I have not listed. 

I have been putting this off, trying to write the timeline to share the full journey. However, I feel as it is the saddest damn story one can write. So I am starting with this. They (my daughter Addison, my son-in-law Cody, and my granddaughter Taelynn) are currently inpatient at the Sanford Children’s Hospital in Sioux Falls, SD. They were here 2 weeks ago where they had to start a feeding tube through the nose because now, on top of everything, she is refusing any and all food and bottles. They were discharged that Friday and sent home to do feedings every 3 hours, I believe, and then a constant drip during the night. However, Saturday and Sunday, she was throwing up almost after all feeds. So they went to the local hospital, who noticed her sodium was extremely low and decided she needed to go emergent to the Children’s Specialty Hospital in Sioux Falls. So they were admitted Monday, 5 days now again. We are awaiting the MRI and EEG. Then on Monday the 21st, she will have surgery at 9 am to get a permanent G-tube placed in her stomach to continue her feeding through a tube in her stomach instead of through the nose.

I will try to add more of a timeline to get us to where we are, but it is a lot of emotions and details we want to share to be transparent. Addison had to quit her job to be able to care for Taelynn and get her to all of her different appointments every week. We have found out that the parents that have always held jobs and still work don’t qualify to get help when they need it. So I put this out there to help the kids with all their expenses during this time. We are used to helping, not asking for help, so not sure if I even did this right. Any help for the kids is greatly appreciated! They have to pay for all their meals and needs while they are getting Taelynn her help. Just thought I would put this out there to see if we can mute the financial burden and let them focus on their daughter. Thank you, everyone, for the calls, texts, and messages. They are seen and much appreciated!

As of 4/29 Little update for everyone. We met with the oncologist and have a diagnosis and a plan. She has been diagnosed with an optic pathway glioma astrocytoma. This type of cancer/tumor only goes after the brain and the spine. However, when they did the spine MRI everything looked perfectly fine so we are good there! They will do a lab check tomorrow morning and as long as she is stable, we will start chemo tomorrow and will follow doing that every Wednesday for the next year. While she is doing chemo, they will do repeat MRIs every two months to check the growth/shrinkage. We will be up here for the next two weeks just to make sure she does okay with the chemo treatment and then we will be sent home and be doing all other chemo treatments in Sioux Falls minus once a month when we come back up to Mayo to meet with him. I hope that all makes sense!