From the beginning

For a few family members and friends, the topic of this blog will be of no surprise. For many others, this might be the first time hearing that we have already been on quite the journey with our little boy in the short time that he has been with us. This blog is intended to keep people in the loop with what is going on with Riley, without Krista and I having to specifically reach out to everyone with updates, as that can be quite time consuming and emotionally draining.

Around 4 months ago, we started to become concerned when Riley was not quite hitting milestones for head control, and would not do anything but cry during tummy time. Our pediatrician was not overly concerned, given his age, and told us that no two kids are the same, and milestones do not always happen on the timeline found in books. It wasn't until an appointment in November at around 5 months, that she became concerned. He still did not have great head control, still was not making gains during tummy time, and was no where near sitting on his own. Between his pediatrician and therapists, we decided to start physical therapy with him once a week to strengthen and teach his muscles in ways he wasn't learning to do on his own. Over the past few months he's slowly making progress on holding his head strong, rolling over, and starting to swing his arms out to reach for things.

In early December, we were referred to a Pediatric Neurologist, who immediately showed concern, and started testing for muscular disorders on day one. The first was a blood test, which we were told would be an indicator of potential muscular dystrophy if the results came back abnormal. That test came back normal, but we were then set up for an MRI to check for deformities in the brain.

Waiting for results was excruciating, but on on new years eve, we were told that the MRI came back normal, and we celebrated with friends that night. Next was a muscle biopsy. While having your 8 month old go through a surgical procedure is tough, knowing that results were not due back for two months is even harder.

Last week, we noticed that Riley was acting funny, and he started having minor twitches in his hands and feet. This progressed to spasms throughout his body, which we caught on video and showed his pediatrician. After an EEG and another trip to the Neurologist, we were told that Riley is having Infantile Spasms, which are a form of seizures.

On top of that, we also were informed that partial results were back on the muscle biopsy, and it showed abnormalities. We were told that he has Type 1 Muscle Fiber Disproportion. This is a deformity in the specific muscle fibers utilized for general strength and endurance. This begins to explain Riley's weakness, but unfortunately there is still more to figure out to try to find an underlying cause for both issues. The first priority, for now, is to start treatment for his spasms. Left untreated, infantile spasms can cause further development issues both physically and cognitively. Hopefully the medication will work, and we will start to see improvements soon, because Riley has been pretty out of it since this has started.

For now, we will continue to wait for more test results, and hopefully we will know soon exactly what is going on, so we can attack it head on. we will continue to use this blog to keep everyone updated on whats going on. We are extremely blessed to have an amazing support system, including all of our family and friends. We thank you all for your continued support as we continue our journey to figure out whats going on to our little boy.