09/18/2024
Hi friends! 🩷 Long post but all the updates! (And more details on our site if you’re interested!)
Speech & Plastics: Speech continues to be one of our biggest hurdles, and after an X-ray study over the summer proved Izzy to have velopharyngeal insufficiency, Izzy has been scheduled for palate surgery on October 14th. Dr Patel is going to build a flap tailored to Izzy and tether together her palate and throat. There are risks and side effects but this surgery is the only way to fully allow Izzy to make her consonant sounds - she has so much to say! Due to the additional childhood apraxia diagnosis, she will continue her speech therapy with Miss Patti after the operation to help with the neurological connection.
Audiology: When Izzy is under anesthesia for her palate surgery, they will complete a full ABR to check her hearing since we’ve had trouble getting conclusive results in the past.
Endocrinology: Dr K has to be the one to sign off on Izzy going under with anesthesia since she’s the one who monitors her levels, so pre-surgery consists of labs & a kidney ultrasound. The ultrasound was this week and showed normal results. Izzy has been back to getting labs every 3 weeks to check her calcium and phosphorus due to lowered levels last year. She’s remained on medication because of this but her numbers are now stable. Parathyroid, thyroid, and vitamin D have all been checked too - and they’re good!
Immunology: Hooray for this - Izzy’s small but mighty T cell army continues to fight! Dr Li said at this time he doesn’t need anymore labs and Izzy can go to his yearly check-in list!
Genetics & Pediatrician: no new concerns in these areas and Izzy is up to 25 pounds!!!
Ophthalmology: no new concerns; dilation at her next appointment.
Help Me Grow: Izzy completed this program in June and started preschool in September. It’s not going well lol but we’re trying.
That’s all on our girl for now 😅 And this weekend I’m heading to Nationwide Children’s for their big 22q conference - always learning more!
