THE GOOD AND THE BAD NEWS

We had quite the day yesterday. We ended the day with some good and some not so good news. Jacob had his annual cardiology appointment. It always makes me a little bit nervous when we're going to check out Jacob's heart. I stare and stare at the screen of the echo, trying to interpret the images on the screen. The good news is that the function of Jacob's heart is working perfectly. His heart is healthy! Jacob's cardiologist also pointed out that since Jacob hasn't presented any heart problems in his first six years of life, it is not likely for him to develop heart problems. That made my heart jump!

We got home from the cardiology appointment. It was yet another beautiful spring day. I finished up my work day, and Gemma and Jacob sat outside in the sun and went for their first walk this spring.

Jacob had a good afternoon in the spring weather!

So, as it was time to give Jacob a bath before dinner, I was surprised to see a big blue bruise on his elbow. In addition, his arm was very swollen. I was hoping that an ice pack would help with the swelling, but instead the swelling got worse. Jacob still seemed as happy as could be!

Since the swelling hadn't gone down, we decided that I should take him in to urgent care to get an x-ray, so we would know that we were not missing anything. Rushing in with Jacob to an emergency room with a high fever or seizures is a common thing, but to come in with a bruised swollen arm is not.

Jacob was taking to x-ray pretty quickly, and we got the news that Jacob has a distal humerus fracture on his left arm. Jacob has a broken arm! I honestly couldn't believe it. It blew me away. We had no idea when this had happened more than the time frame of the day. Most likely, it must have happened as we had transferred Jacob, but we didn't know...

I did get the feeling that the doctor had to rule out child abuse based on her questions. It was a weird position to be in, since we're typically the family that everybody knows in the emergency room. As soon as the x-ray was read, the tone changed. It was clear from the x-ray that Jacob has osteopenia or osteoporosis. Any thoughts of us causing Jacob harm was gone, and instead the focus was on how we can help Jacob to heal as comfortably as he possibly can.

Jacob went home with a splint. He is on Ibuprofen and Tylenol around the clock. Ice packs every hour. On Monday, he will be getting his first cast. We don't know for how long he will wear the cast at this point, but hopefully it will be gone by summer.

Jacob has gone through worse things than a fracture, but this was a really tough one to digest for both Gemma and myself. We were both crying and hugging this morning, and hadn't been able to sleep. I think Gemma put it in the right words: "we work so hard every day to care for Jacob, and we have become so good at it, so to have this happen to Jacob - it felt as if we failed him". Unfortunately, that is how it felt. We didn't prevent the fracture, and we don't know when it happened. The other thing that is clear to us is that Jacob doesn't feel pain much. He didn't show any pain with this fracture. I think the photos from Jacob's spring walk are proof in itself.

Talking to Jacob's core team today, it is clear that noone is surprised. If anything, they are surprised it hasn't happened before. Osteopenia or osteoporosis are very common in kids who are not mobile and are on seizure medications. Dr. E. said that we might have to be prepared for this to happen again due to Jacob's low bone density, and that it has nothing to do with our care.

So, we're adding yet another specialist to Jacob's core team - this time an endocrinologist. We're also removing yet another seizure medication that decrease bone density. We're also checking into Jacob's vitamins once again.

This is how he looked by the end of today. He was resting, and seemed pretty comfortable. The highlight of the day was hanging out with Sarah. Sis thinks the cast is making him even cuter! She is also the first one to sign his cast :-

We'll keep you posted on his progress, and we're definitely ALL ready for spring break!

Much love,

Maria.