First, I want to apologize for not posting any new content in a while. It’s been a hectic few weeks for the Barber Bear Family. Riley Bear got sick on Halloween, cancelling all of our plans to instead partake in snuggles and crying. Then, she immediately cut another tooth afterwards. Her bad attitude has persisted ever since. I’m pretty exhausted at this point.
Last week we had another run up to Dallas, where we met with the ENT (Ear, Nose, and Throat) Team that will be doing Riley’s cochlear implants. We also checked-in with our Heart Transplant Team. Amidst a constant stream of temper tantrums and crummy weather all across Texas, it was not a very fun adventure. Getting our toddler through doctor’s appointments is still a nightmare, even with all of the tips and tricks we’ve come up with.
“We managed to forget some of the most important items for our trip (like Riley’s favorite bunny), and the disaster spiraled even more out of control.”
On top of the usual chaos, I was trying to prepare a packing post for my wonderful readers, to let you in on some of the space-saving habits I’ve developed, but I failed in a pretty epic way. We managed to forget some of the most important items for our trip (like Riley’s favorite bunny), and the disaster spiraled even more out of control. So, maybe I’m not the right person to write an article on expert packing…
Anyway, I finally decided on adding a regular segment to the blog, titled “The Riley Report.” This way you will all be able to easily find posts related to medical updates on Riley. I am under no illusions that you guys come to read about me. My kid is just too dang cute! I know she is the star of this show, as she deserves to be.
“Our next appointment to finish all of the paperwork-type stuff and final testing is in December. That will be our last appointment with the ENT Team until surgery time!”
During this last trip, not much actually happened. They did some labs, and a developmental analysis. Our next appointment to finish all of the paperwork-type stuff and final testing is in December. That will be our last appointment with the ENT Team until surgery time! They’re waiting to get the results from an MRI (Magnetic Resonance Imaging) scan that Riley did last year, to ensure she isn’t at an increased risk of nerve damage during the operation. If necessary, the audiologist might still do a sedated ABR (Auditory Brain-stem Response) test, but with Riley’s heart condition, our Transplant Team wants to avoid any unnecessary sedation. Nobody seems to think the additional test will be necessary, but that really depends on the results Riley gives during her next hearing test in December. She isn’t exactly known for her cooperative nature, remember?
Luckily, we didn’t need another echo for the Transplant Team yet, so they just took some blood and checked Riley’s vitals. A halter monitor was also set up for her, to monitor her heart constantly for twenty-four hours. Riley’s now up to 13 mL of her heart medication (Pediatric Propranolol) three times a day. (If that sounds like a lot, it’s because it is. Whatever works, right?) She’s still a little small compared to the average growth charts, but NS (Noonan Syndrome) patients actually get their own special charts! According to the NS chart, our Little Bear is tracking just fine for now. It’s almost time to upgrade her car seat, she’s so tall!
In the time I’ve been away from my keyboard, we also had a follow up with Hematology for more extensive blood testing. Riley’s Hematologist just wants to be thorough, since NS can often create bleeding issues. (That day was another horrible experience, in which I wound up driving my youngest brother-in-law’s car downtown for the appointment, spilled coffee everywhere, hit myself in the head twice, and dealt with an extremely loud toddler screaming the whole time.)
“Up next for the Barber Bear Family is some time apart.”
Up next for the Barber Bear Family is some time apart. My husband, Ross, is going to New Jersey for work for a few days, while Riley and I go to Lubbock to visit with my family. It’s been a long time since Ross and I were apart for so long, and it is especially weird that I won’t have the dogs with me (they’re staying home with my brother-in-law), but I’m hoping these trips turn out well for all of us. It’s my first road trip alone with Riley bear. New adventures are on the horizon! Let’s see what trouble I can get my backpack into this week!
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Tell me about yourselves, parents! How do you handle the excessive attitude your kiddo throws at you? Give me a shout out on social media, or in the comment section below.