The story of Elijah’s journey is an incredible one. It all started with a phone call from a friend in the fall of 2022. She was searching for nursing services for a child that needed to be placed in foster care. Since Michael and I had closed our fostering license, I wasn’t able to immediately provide any help and my nursing company did not have nurses to provide. Knowing our past experiencing with fostering, she carefully proceeded to ask me if we would consider reopening our foster license to take this kiddo on. The situation was dire as the child was entering into end-of-life care. Within the hour, Michael and I agreed and began the process of reopening our license. With my nerves and racing heart, I remember going to the hospital to meet this child and knew from the moment he squeezed my hand that this was meant to be. This is where the story really begins.

In 2022, Elijah was discharged from the hospital into our care. His needs were great. He seemed so frail and fragile. He was on continuous oxygen that could go up to 5L. He was on 17-hour feeds through a GTube and needed medications 3 times per day that were very sedating. Furthermore, he needed chest percussion therapy and cough assist minimum twice daily – many times it was more than that. He was not stable enough for me to leave the room to eat, shower, or even use the bathroom unless someone else could watch him. It was definitely an adjustment.

Making things more challenging is that our only available bedroom was upstairs on our second floor. Thank goodness for the support of our local fire department, who came out to lend a hand in getting him upstairs safely.

The first few weeks were a blur of activity. He had missed so many appointments in the past that he needed to catch up with all of his providers to begin the care necessary to become healthy. Due to the amount of appointments some were double book with intentions of rescheduling, but did not get around to that. We also had a hospice nurse in and out of the house once a week and I was designated his full-time nurse 24 hours a day until a night nurse could be hired. 

Through this process, we worked hard to develop a positive relationship with Elijah’s bio dad. We are firm believers that safe biological family is so important, especially if end of life care is really the need. 

After spending time caring for Elijah, I quickly felt that this was not the end for him. Besides my gut intuition, as a nurse, I saw the potential with intensive healthcare, he would begin to become healthy. I would share my assessments and thoughts with the providers, dad, case worker, and foster agency case management. However, as a foster parent, there is only so much that I could do. Sadly, my job is to follow the desires and wishes of the bio dad. 

One day, the social worker, chaplain, and nurse surprised me with a joint visit. In this visit, as I was sharing my thought on Elijah’s care, the social worker became agitated and told me that I could not advocate for him. She then proceeded to tell me that she would be recommending that he needed to be in a different home. She even went to the extreme of calling my employer to complain about me. A meeting was called between my employer, DHS, bio dad, and the hospice team. The social worker once again became verbally aggressive, which led to Elijah having a seizure during the meeting. Since we had developed a positive relationship with dad, he trusted that we had Elijah in the best interest and that hospice did not. He decided to remove hospice from care, allowing Elijah to continue the best care he could through the providers we were working with. 

As time went on, Elijah began to thrive. Beyond the medical care, we were able to get him into physical, occupational, and speech therapy. We worked with a multitude of doctors to adjust medications and treatments needed for his particular needs. We wanted him to experience life to the fullest, so we jumped on opportunities to take him hiking, fishing, bowling, and other outings where he engaged with other kids with needs just like him. Through all of this, we continued to keep bio dad in the picture, meeting with him for dinners and spending time with Elijah. To our surprise, Elijah’s bio dad decided that our home was what was best for Elijah and agreed to allow us to adopt him. In 2024, Elijah officially became our son.

Since the start of care, Elijah has made tremendous progress. There were many challenges we faced being that Elijah does not have the ability to fully communicate with us. Due to this, we have had to work closely with doctors to analyze his medications and their impact, his food intake, and more. Through the past two years, Elijah has progressed to no longer requiring continuous oxygen or as frequent CPT and cough assist treatments. In 2023, he had spinal fusion to fix the curve of his spine. The most amazing new diagnosis came in 2024. This came on through a series of appointments and scans requested by his neurologist. The neurologist wanted an MRI brain scan to help determine the best approach to treating his condition. The brain scan did not match what they were seeing with Elijah’s presentation and recommended genetic testing. 

Of course, I said yes. It took over a year to get an appointment with genetics, but we finally got there. 2 months after our genetics appointment, we received test results showing that Elijah in fact did not have Cerebral Palsy, as he was originally diagnosed with. Elijah new diagnosis was a very rare genetic disorder called Allan Herndon Dudley Syndrome. 

Since the diagnosis, I’ve worked on learning more about it. Through my research, I found several specialist around the US that work specifically with children who have this diagnosis. I reached out to a doctor, and was able to speak directly to him regarding a clinical trial they are doing. He was willing to accept Elijah into the program and the chaos of lots of travel began. It is so worth it!