I finally have a few quiet moments to sit down and recap the Boston trip. I think it’s good I took a few days of reflection because honestly, I needed time to process all that was thrown at us. It was a whirlwind and overwhelming to say the least.

First I have to say that almost everyone we encountered on our trip was magnificent. From the woman we spoke to at the Ronald McDonald House to the specialists and doctors we saw at Boston Children’s Hospital. We did have an incident in the radiology department that can’t go unmentioned but other than that, it was a great trip.

Day one we saw audiology and confirmed that Ella can hear sounds that are near her. We were told that based on her hearing she hears what she needs to hear for speech and language purposes. The long distance hearing was inconclusive so when we go back in February we are going to take her for another test to see if they are able to gather that info. It isn’t as critical in regards to her development, but it will be good information to have. The audiologists were amazing but Ella got bored and at one point started yawning during testing and closed her eyes. There is no way she was tired. That was her sass shining through.

Next we met with the endocrine team. There was concern about Ella’s size. Idiopathic short stature was a phrase that was thrown out and discussed. Pending test results on growth hormones levels, further conversations need to be had. Her growth plate was x-rayed and found to be right on target so that’s a good sign. We were given a glucose monitor to check blood levels when she wakes up and briefly discussed growth hormones. Again, that is a conversation we will have at our follow up when we discuss the hormone levels and blood work results. Our next move is pending.

Day two was jam packed and filled with some unexpected chaos. In the morning we met with a physiatrist. He went over Ella’s therapies and checked her movements. He was amazing. He made some suggestions, but assured us that we were being incredibly proactive and doing what we needed for Ella. Based on the reports that he had before our visit, he was impressed with all that she was able to do. (All of these doctors read the intake reports and were on top of their game.) At one point he said we should start thinking about exploring a wheelchair, but we all agreed her adaptive stroller is the best thing for her right now.

Our next appointment was a virtual visit with a nutritionist. This was my least favorite. We went over everything Ella eats and were questioned multiple times about why she wasn’t drinking any calcium enriched beverages. To know Ella is to know that she can only keep down water. I swear I repeated that one hundred times. After we finally established that was a valid concern the nutritionist checked Ella’s BMI and was pleasantly surprised with the numbers. We agreed to try and sneak more dairy in her diet and get her on some calcium supplements. That zoom called exhausted me. We had some time to get food after that visit and rally. It was much needed.

After lunch we headed to Ella’s general doctor. She was the one we zoomed with before our trip and she is in charge of setting up Ella’s team. She wanted to meet Ella in person and check in to make sure everything was going well. She’s amazing. We could not have a better leader. While we were with her she set up the rest of the x-Ray appointments we needed and scheduled us for labs. She is very honest and sat there and listened to all we had to say. She even went over some reports with us. I love her.

Next we headed to x-Ray. We needed films of Ella’s hips and spine as well as her belly for GI. The x-Ray tech asked both Steve and myself to assist in keeping Ella still and with positioning. At one point Ella was sitting on a chair, she walked away not indicating how far she would be going or for how long, and before I could get to Ella she slipped and fell about two feet off a chair onto a hard floor. Ella has zero defense reflexes and her head smashed into the ground. Steve rushed over to her, scooped her up, and comforted her.

Things got a little crazy after that. The tech ran out and multiple people came in. Another tech, a nurse, and the resident doctor. Ella was checked from head to toe and it was quickly noticed that she had a ginormous bump on her head. I am telling you this bump was HUGE. We were told the bump was a good sign because it meant the injury was external but that should have never happened and I will be following up with the hospital. Completely unacceptable. We were over forty-five minutes late for our GI appointment, but Ella had calmed down so they let us go knowing we would be meeting with neuro later.

We arrived at GI and they had been called and updated. Even though we had completely missed our appointment time, the doctor met with us to do a physical exam on Ella. She wanted to meet her and squeezed us in on a zoom call for the day after we returned home. We spent over two hours talking to her that day and are trying some interventions at home to try and help Ella with her tummy issues. We are also waiting on some blood work from GI as well. Hoping we get some feedback this week.

Our second to last stop was with neuro. We had zoomed with her before we came so she really just wanted to go over the latest testing. We reviewed the scans and EEG and agree with our doctor in NYC. Ella’s not having “spikes” and her MRI was clear. She thinks that Ella’s episodes at school are just Ella’s behavior and is on board with trying to get a nurse in the classroom. She is completely confused by what they are seeing and like us, had more questions than answers. We will be following us with her on the genetic piece. That seems to be the direction things are pointing but we are still waiting on insurance approval to get that done. If if doesn’t come through, there are some grant options.

Our last visit for the day was to the lab. At least ten viles of blood were taken and Ella was a champ. It was a long day for her and she handled it well. We made sure we went right back to the apartment so she could lay in bed, as she had been sitting all day and I am sure her bum hurt.

We got to explore the city a bit and are planning on returning in February to see the departments we were unable to see, as well as schedule any follow up visits we need in person. The next few weeks will be filled with follow ups on testing and care plans if needed. We are just getting started and slowly crossing things off the list.

Being away from the boys was hard and by day two my mommy guilt was hitting me hard. I miss my little dudes, qbut they had a blast without me and I know they were right where they needed to be, and well taken care of.

Decisions will need to be made in the near future and that is sometimes the hardest part. You always wonder if you are making the right ones. My cousin reached out to me when we got home to inquire about the visit. She has always been so supportive and is a great sounding board. She said to me, “the power of love will steer you in the right direction.” She is absolutely right. I know in my heart these tough decisions will continue to allow Ella to live her best life.

Thank you to alllllll who reached out and followed our journey on IG. That’s where I have been posted all of our updates and sharing our stories so now is the time to hit that follow button so you don’t miss anything.

https://www.instagram.com/zurlnick_five