All Things Owen

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Hey all,

We just returned home from our bi annual trip to Cincinnati and we have some updates to share.

Owen did great at his appointments. He was patient and listened to directions well, and made lots of friends with the medical staff we saw. We were so proud with how brave and happy he was compared to prior visits.

Now to test results.

For the last year and a half, Owen has been getting a Brain MRI every 6 months(normal for him is once a year), monitoring a cluster of tumors in his brain that showed slight growth a year and a half ago. His last MRI before this remained stable, however this week's MRI showed more growth.

With this discovery, it's been discussed with his doctors, that it's time to start a medication to help stop and reduce these tumors from growing any more. While we are thankful to have this option, this medication comes with a host of side effects that can be hard on anyone, not to mention a child with Owens' medical background. We will start this medication on Monday, and with that we will have to be vigilant for mouth sores, compromised immune system symptoms, avoiding certain foods and sensitivity to the sun. We have been on this medication before when Owen was much younger, and unfortunately had to discontinue because he was constantly unwell. We are hoping and praying this will be a different experience now that Owen is older.

Another visit we had was regarding Owen's right arm/hand weakness. While Owen is in a host of different therapies throughout the week, we have not had great success in improving his strength and use of his right hand. We now have new ideas and referrals for some different options for possible treatment to explore, and hopefully we can help improve this area of development so Owen has less hindrances going forward.

Finally, the last visit we had was with Opthalmology. The good news is there is zero tumor involvement in his eyes and they overall appear healthy. One concern for seeing Opthalmology has to do with one of the medications Owen takes for his epilepsy. This medication has a potential side effect of peripheral vision narrowing, and thankfully this is not a concern at this time.

One other concern we had was that over the last year, we've noticed at times that Owen's eyes will wander outwards. Right now, the plan is to adjust his eye prescription and recheck in 6 months as long as he doesn't seem bothered by it. Worst case scenario would require surgery, but we aren't there yet.

If you've made it this far, we appreciate it! Owen, and our family could use all the good thoughts and prayers we can get. Enjoy some photos from the trip!