All Things Owen

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Heart Echo done! It took a bit of convincing(and some Cowboy Jack), but Owen did great! Now we wait for results.

Getting his heart checked out.

Yearly check up with the Pediatrician went well! Owen has gained 5lbs and 2 inches since last year.

(Do you spy something missing?) 🤭

Now that things have settled and we're back into the groove of things at home, I feel like I can now wrap my head around everything that transpired last week.

We'll start with the best news..

For the first time ever(aside from infancy), Owen was able to do an EEG recording without being swaddled or restrained! This is HUGE, and made the event so much less traumatizing for him and his mama. No tears and even some giggles were had while we finished up the test. He then again did great getting his EKG done and flirted with the tech the entire time.

His EEG results then came back NORMAL. We haven't had a normal result in years. Usually there is a spike, epileptic discharge, abnormal for age etc etc, but not this time! This means Owen's brain has the best chance to learn, retain and use said information to the best of his abilities. It is really the best news of the week.

The Opthalmology visit was overall good. Owen's exam was stable with no new findings. The doctor did recommend he receive additional testing for his vision by an OT, so we're currently working out the details for that right now.

Brain MRI showed there was more growth in the SEGA tumor we have been keeping an eye on. This means we'll increase the medication he is already on to halt growth and possibly shrink the tumor, however Owen does not respond to this medication well, as it also lowers his immune system. So we have to slowly increase and hope he stays healthy 🤞.

Abdomen MRI showed all organs were normal except for his kidneys which we already knew about. It did report the possibility of not only cysts(not new news) but also tumors, so this is another reason we are increasing his dosage of said medicine mentioned earlier. His kidney function is normal, which is what we pay attention to most.

His EKG results were probably what surprised us the most. Owen has been discharged from cardiology since he was a year old. Prior to then, he did have heart tumors that thankfully dissipated as his heart grew, and his heart has always functioned perfectly fine. But his EKG at this visit came back showing he has a prolonged QT interval. Neurology consulted with Cardiology after we got the results, and suspect it is a side effect of the medication he is on for sleeping, but to be safe, we are scheduling an echocardiogram locally to get a better look. Then we'll talk next steps.

All in all, Neurology was thrilled with his demeanor and excited for all the development we've seen in the last year.

Keep praying for this strong, silly boy. ♥️

Last appointment done! See ya Cincinnati!

EEG is next, followed by Neuro visit and EKG. 🙏

Made it safely to Cincinnati this afternoon after a short(but fun!)visit with family in Indiana.

First thing on the agenda was a belated birthday present trip to our favorite indoor play place. Owen didn't dare stop for me to get a better picture, so here he is climbing those stairs like a boss. We spent two hours there, made a stop for dinner and returned to our hotel that we checked into earlier in the day.

Tomorrow our only appointment for the day is Owen's MRI of his brain and abdomen. This requires sedation for Owen to stay still for the imaging, and they'll also take this opportunity to draw his bloodwork to see how his body is functioning, and handling one of his medications that can lower his immune system. Owen can be a beast coming out of sedation, so prayers he comes out smooth and calm would be much appreciated. He'll also have to be NPO in the morning, and this kid loves his food, so prayers for that too!

What better day to post an update than on Rare Disease Day?

Owen has been doing well! He has been making great strides in development and growing like a w**d! He turns 9 in March, and I'm having a hard time wrapping my head around the fact that he's gotten so old in what feels like such a short amount of time.

The third week in March we have Owen's bi annual trip to Cincinnati. Some things are normal check ups, and others will give us an idea of how to proceed with certain areas which I'll get into next.

Brain MRI:
Owen had slight growth in a tumor they call a SEGA in his last two brain MRIs. If this tumor continues to grow it could obstruct one of the ventricles in his brain, which could cause a host of other medical problems we are hoping to avoid. So at our last visit Owen was started on a medication to hopefully stop the growth and shrink this tumor. This will be his first MRI since the introduction of the medication, so we are hoping for no change or improvement with the tumor, and overall stable findings of his entire brain.

Abdomen MRI:
Owen has some involvement in his kidneys, but his kidney function is normal, so this isn't a concern right now. Hoping no additional involvement in his kidneys or any other organs. If things have remained stable, we may be able to go years between his abdomen MRIs.

Opthalmology:
Owen will have an eye exam which involves dilation which is hard for him to understand. We already know he has an astigmatism and is near sighted. However, with a medication he is on for his epilepsy, one of the possible side effects is peripheral vision loss so they will do their best to assess him for this. TSC can also cause tumors in the eyes, but Owen has not had any involvement so far.

Cardiology:
This will hopefully just be a routine check up that they like to do every 5 years, which consists of an EKG.

EEG:
Owen will get a 1 hour EEG done. This will tell us how his brain waves look and if there is any seizure activity.

Neurology Visit:
Will meet with Neuro team to discuss above mentioned test findings and the plan going forward.

We're hoping to do some fun stuff while we're there too, since it's the week following Owen's birthday. Owen has especially enjoyed the Zoo and some fun play places we've gone to on last visits.

Well, that's all folks! Writing it out sure feels like a lot but we're hanging in there and know Owen will give it his best. Prayers for travel, appointments and results appreciated!

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!