Compared to other posts, this is going to seem somewhat lacking in drama. But Brian and I have had some unique experiences and interactions over the last couple of weeks that have reminded us how important it is to raise awareness about Trisomy 13 (and 18 too, for that matter, as the two are extremely similar). As we know from personal experience, when parents are receiving new T13/18 diagnoses, they are being given out of date, inaccurate information by doctors who are either biased against these kids for some evil personal reason, or who are just misinformed due to the lack of comprehensive studies being done on T13/18 on a larger scale. The result is that a staggering percentage of these parents are choosing to terminate their children, because they're being told by the doctors that they trust that abortion is the humane choice.
I realized this past week that I post about Avonlea (and how full, fun and beautiful her life is) quite often on my personal Facebook profile, but rarely on her official Facebook page and almost never on this blog! This blog is the easiest site to boost SEO-wise in order to have it come up higher in google-search rankings. I would love it if this blog would be one of the first thing seen in an internet search by a parent who has just received a prenatal diagnosis like Avonlea's. I would hope that seeing Avonlea's sweet face and learning about how she's been able to thrive because of the medical care and services that have been made available to her would encourage those parents to reconsider if they had any thoughts of terminating their baby!
So, I am going to try to be better about posting updates on this blog, and posting a link to those updates on Facebook to drive traffic to this site! Please, even if you don't have time to read a long blog post, click my links when I post them to boost this site's SEO and give recently-diagnosed parents a chance to see Avonlea and have hope when they are in the midst of hearing from their doctors that all hope is lost.
Ok! So... all that being said...
Here's the quick update I was GOING to post on Facebook, but figured I should post here on the blog :)
I just spent several hours today making, confirming, and moving around appointments for Avonlea. She has about 14 appointments over the next 2 weeks (including her regular therapies)... Oh boy. Lots of crazy (and potentially scary) ahead. If you think of it, please keep her in your prayers. Here are the major things that are happening and how you can be praying:
Tomorrow (Tues. 5/3) she has a follow-up swallow study at Levine Children's Hospital to see if she is still aspirating when fed orally. Please pray that the results show us that we can begin feeding her by mouth again and working up to having her G-tube removed in the future. She was a great eater for 23 months until we believe a seizure on Feb. 12 caused nerve damage in her throat and caused her to begin aspirating. She's spent the last 3 months miserable, wanting food and milk, but unable to have anything by mouth! It's been so sad. Please pray that the swallow study shows that she has healed in this area.
Thursday (5/5), she has her first Craniosacral therapy appointment at Balance Yoga and Massage. This is something several other Trisomy parents have told us about that has helped their kids tremendously in a lot of areas, particularly with seizures! It may not be a safe alternative to skull surgery altogether, but we're hoping that maybe at least it can eliminate her need for medication over time. Her seizure meds have made her very irritable on a daily basis.
Monday (5/9), she has two appointments: 1) for a CT scan at 8am at Levine again. This is to get a better idea of how the bone-structure of her skull is impacting her brain. 2) we are seeing a neurosurgeon at Carolina Neurosurgery & Spine Associates PA to have those CT results read. Right now, it appears that she has something called craniosynostosis, which means the sutures of her skull fused to early and now the brain and skull are growing at different rates, putting pressure on the brain (this could explain the seizures coming out of nowhere as of NYE, after they seemed to have been eliminated last year). If pressure IS being put on her brain, the neurosurgeon will want to do surgery on Avonlea's skull.
Tuesday (5/10), we are meeting with a plastic surgeon (Dr. David C. Matthews MD), who would be performing the surgery on Avonlea's skull alongside the neurosurgeon. Apparently, this guy is the best in the biz!
Thursday (5/12), Avie has her first... dun Dun DUN... dentist's appointment at Charles H. Crawford Pediatric and Adolescent Dentistry! I'm so nervous. In addition to being... ahem... a TODDLER in general, she's pretty serious about not cooperating with things she doesn't like. And getting her mouth poked at with metal tools is probably not on her personal to-do list. We're pretty sure she's going to give them a run for their money. We're also worried about the general health of her teeth. She had oral aversion to teeth-brushing for so long until recently, but getting a dentist appointment has been at the bottom of our list with all these other neuro and G.I. issues.
I'm still trying to connect with her neurologist to get her sleep study rescheduled! Our truly wonderful pediatrician at Sunshine Pediatrics is working hard to find us a new neurologist that takes Avonlea's tricky insurance! But until we find someone new, we're moving forward with having the sleep study done at her current [awful] neurologist, for time's sake.
So, for now, that's it. Haha... I know. It's a lot. And this is in addition to her regular therapies (physical, occupational and speech therapies, as well as early-intervention). She has all 4 of those therapies this week, and 3 of them next week. She also has a dietician appointment at WIC next week, but that is a pretty standard check-up, at which we don't plan to learn anything new or interesting.
And to close this post out... an adorable shot of Avonlea with her Daddy on her 2nd birthday!