Last Wednesday Ella and I took a trip to Boston, with nurse Laura, for a follow up visit with her physiatrist, ortho, and a new ENT doctor. There were some concerns about her hips and possible sleep apnea.

Ella was a frickin’ rockstar. The day was long, as we were in the car over seven hours round trip. She did not fuss at all. She never ceases to amaze me with her go with the flow attitude. By hour two on our ride I was already over it. With Laura in the back keeping her entertained she was living her best travel life.

When we got to Boston she laughed and did everything that was asked of her during all of her visits. We often get complimented on how well she behaves. As long as she is engaged she is usually laughing and flashing her precious Ella smile. Dr. Fogelman even let her play with his name tag. She was entertained our entire visit.

To say these doctors are knowledgeable, kind, compassionate, and so reassuring is just the tip of the iceberg. They never make you feel like you are wasting their time nor do they think any question or concern you bring to them is not valid. They give you as much time as you need and ask as much as they can to paint themselves the most accurate picture of how Ella is doing.

We got only good news this visit. Ella’s hip placement has not changed since her last x-ray which was reassuring. Both doctors we saw in ortho were pleased with the progress that she made and made no further recommendations other than carry on as we are. They want to see her back in Boston in a year but as always, are always accessible if we need to follow up sooner. They did make a point in saying that getting Ella nursing was the best thing to happen for her.

We did discuss doing some further genetic testing to look specifically at certain genes. That had already been in the works and we got word from the insurance company that is was approved on Friday. Interestingly enough one of the doctors thanked me for bringing Ella to Boston and entrusting them with her care. He said they have some of the best doctors there and see thousands of patients, yet Ella is one in a million. Her lack of diagnosis motivates them to find answers and he said they are so happy to be a small part of her journey. It was reassuring and further proved that we are currently in the right place for her care. She has so many eyes watching her.

Our visit with the ENT checked off a box we had been waiting to get answers on. There were concerns from her team that she might have sleep apnea because on occasion her oxygen drops pretty low at night. They scoped her and saw no issues with her tonsils or adenoids. It was recommended that she get a sleep study to see the origin of the apnea. It is most likely neurological based on everything else she has going on. Very soon I will be calling to set up a sleep study for her.

I always get such anxiety leading up to these yearly appointments with Ella. They have not always gone so well and my heart can only take so much more. I was happy to hear that after the year we had, we seem to be moving in a positive direction. Regression is never a good thing and it’s something we are constantly worried about with Ella. This visit took some of that worry weight off my shoulders.

Fingers crossed we don’t have to head back to Boston for another year. I have seen what 365 days look like in Ella’s life, and choose to only look a short distance ahead at a time. We finally have a solid care team for her and am confident should I need any of them, they will be there in a heartbeat. She is loved. That is certain.

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