These last few weeks have been an absolute whirlwind of appointments for Avonlea. A lot of you have been reaching out and asking how they've been going and what kinds of information these appointments have yielded, so we've waited until we had the most amount of up-to-date info possible to post what we've learned the over the past few weeks!
On May 3rd Avonlea had a follow-up Barium Swallow study, to see if she is still aspirating during oral feeds in the hopes that we could begin weening her off of being fed exclusively by the G-tube she had placed back in February. This test was disappointing... we had tried feeding her some milk by bottle as well as some pureed baby food in the weeks leading up to the swallow study and from what we could see, she was doing really well eating and drinking! We were hopeful that this meant we could begin feeding her by mouth again, but the swallow study showed that she is still silently aspirating during swallows (food is falling forward into her trachea during swallows and into her lungs, presenting a high risk for infection if not coughed up).
When we first discovered she was aspirating during her first swallow study back in February, the speech therapist overseeing the study told us that Avonlea was aspirating at least a little bit every time she swallowed. This time, however, the speech therapist said that Avonlea is "at high risk for aspiration," meaning that although she did aspirate all of the different consistencies of foods/ liquids they tested, she didn't aspirate every single time she swallowed. So that's improvement! Slow improvement, but improvement nonetheless.
The first time we saw Avonlea's former neurologist after having the G-tube put in, he curtly informed us that she would probably never go back to feeding orally, simply because she has Trisomy 13, and kids with Trisomy 13 just don't come back from stuff like this. We told him that her G.I. doctor thought that she actually could go back to feeding orally eventually, and the neurologist just shook his head and said, "No, she probably won't ever improve in that area."
So the swallow-study at leas proves her former neurologist wrong! Yay.
On May 5th, Avonlea had her first craniosacral therapy appointment. It is certainly something we will have to do more than once in an effort to see improvement over time. It's not a one-stop fix. Craniosacral therapy is performed by a specially-trained massage therapist, who uses touch to stimulate the nervous system to self-heal. When you begin reading about it, it can seem very "crunchy," (hehe) but we've encountered several friends who've experienced injuries and other special-needs families who say that it really works! So we'll see.
The night of May 6th, Avonlea had a sleep-study done overnight at her former neurologist's office. Since my last post (wherein I mentioned that getting this scheduled had been quite a hassle and that we didn't yet have one on the books), the sleep-study coordinator called and scheduled this for May 15th, and then called back a few days later to say that she had a cancellation for the 6th and we took the spot. Brian took her in at 8:30pm and they slept there at the neurology office with Avonlea hooked up to all kinds of monitors to detect whether or not she has any apneic spells while she's sleeping. They were released at 5:30am, arrived home at 6:30am and both crashed right back to sleep for another few hours!
On May 7th, Brian and I were both at different weddings (I was hired by another photographer to second-shoot for her, and Brian was contracted by a photo/video company to do video). We got a text from Brian's poor mother, who was in way over her head at our house as Avonlea had pulled her G-tube OUT OF HER BODY! Of course she would decide to do this when she's being babysat... My poor mother-in-law deserves a spa-day after this ordeal. Thankfully, Brian was part of a big enough team that he was able to head home, and he attempted to put the tube back in himself with the help of some youtube videos. The G.I. doctor had told us that it's possible for the tubes to fall out if the balloon attached to the tube on the inside of her stomach deflates (and that we could probably put it back in after watching some videos on youtube). BUT, apparently Avonlea had pulled it out with that balloon FULLY INFLATED! This means she pulled something the diameter of a quarter out of a hole in her body half the diameter of a dime. And she didn't even cry or anything when she pulled it out! She's a mystery, this girl. Brian could not get the tube back in by himself due to the immense swelling around the G-tube site.
Brian took her to urgent care, who refused to put the tube back in, and then to the E.R. at Levine Children's Hospital, where the doctors spent close to two hours trying to put it back in themselves! They ended up needing a dilator kit and having to put in a smaller tube. It's back in and has even come out one other time, fully inflated, again! This time, we were able to act quickly enough that the site did not swell and we were able to get it back in ourselves. After watching the doctors try for almost two hours to put it back in, Brian had a very good idea of how to do it ;)
On May 9th, we took Avonlea to CMC Main to have a CT scan of her skull done. If you recall, the radiologist who read her MRI results back in Feb. said that the shape of Avonlea's skull appeared abnormal, and that it was possible that pressure is being put on her brain due to something called craniosynostosis (a birth defect where one or more of the joints between the bones of the skull close prematurely, before the brain is fully formed). We saw a neuosurgeon PA who recommended we do a cranial CT scan before seeing an actual surgeon.
Avonlea actually did AMAZING for this CT scan. We thought she would need to be sedated in order for them to get a clear picture, especially since we were instructed to arrive at 6:45am for the 8:00am scan! But the tech suggested we at least try to get a scan without sedating her first, and to our surprise she laid perfectly still! The whole ordeal lasted about 5 minutes and we got to walk out of the hospital about 45 minutes before her actual appointment time for the scan!
We went to see a neurosurgeon, Dr. Wait, at Carolina Neurosurgery & Spine that same afternoon. He looked at her skull and the CT results, and said that her skull did indeed form prematurely, but that he cannot tell if pressure is being put on the brain without drilling a hole in her skull! Um, no thank you. He told us the easiest way to tell if there's pressure on the brain is to take her to her ophthalmologist! Apparently, he can simply look in her eyes and see if pressure is being put on her optic nerve. MUCH easier than drilling holes! Yes.
If no pressure is being put on the brain, then Dr. Wait advised not doing the surgery.
We told Dr. Wait we already had an appointment with a plastic surgeon, Dr. Matthews, for the following morning and he advised we keep the appointment, in case Dr. Matthews had any additional concerns or his own reasons for us to move forward with skull surgery. And that's what we did!
On May 10th, we took Avonlea to see Dr. Matthews, who essentially told us the essentially the same thing: go see our ophthalmologist, and if there's no pressure on the optic nerve, that should mean that there's no pressure being put on the brain and that surgery would not be medically necessary!
I called Charlotte Eye Ear Nose & Throat to schedule an appointment with Dr. Saunders, Avonlea's ophthalmologist, and apparently it's been so long since her last appointment, we need a new referral from our pediatrician. So that's in the works and of course we'll let the world know when we get those results.
On May 12th, Avonlea had her first dentist appointment at Dr. Chuck's pediatric dentistry office in Fort Mill! I was so nervous, but they didn't end up actually even cleaning her teeth. The dentist just examined her teeth and told me to actually clean her teeth with my finger and a piece of gauze, and that this would clean off more plaque than even the vibrating toothbrush we'd been using! He also said the enamel on her top-front-right tooth is under-developed. He quickly assured me that it was not caused by anything environmental (not caused by inadequate care), but was just another symptom of her chromosomal abnormality. Apparently it's quite common in Trisomy kids. He wants to see her every 6 weeks for awhile, to monitor the health of her teeth more closely.
On May 17th, we went back to our now-former neurologist (hopefully for the last time), to have the results of Avonlea's sleep-study read to us. The neurologist said that the study showed that she'd had 1-2 apneic spells per hour, but that they were so slight that they did not affect her oxygen levels or anything else. He said that 1-2 per hour is considered normal, and that it doesn't need to be treated. If you haven't caught this already from several of my posts, we are NOT in love with this neurology practice! And we are not necessarily sold on the idea that nothing has to be done to treat 1-2 apneic spells per hour during her sleeping! We're hoping our pediatrician can get us in at a new neurology practice quickly. I could literally write a book (and at least probably SHOULD write a blog-post) about all of the ways Mecklenburg has disappointed us. I tell people all of the stories of things that have happened to us there and people actually laugh and think that I'm joking. It's that bad. They need to step up their game, in a lot of ways.
So... that's it for now! We have one more appointment next week, an audiology appointment at Lakeside Audiology in Fort Mill! We're so excited not to have to travel to Columbia anymore, as this practice just recently opened up and is a BabyNet provider! Hopefully the referrals to ophthalmology and neurology go through quickly, so we can know more soon about this sweet girl. She has been such a trooper through all of these crazy appointments crammed into such a short amount of time and disrupting her routine. And in the midst of all the craziness, she has decided to start kissing us! Admittedly, they are wide-open-mouth kisses with lots of tongue. LOL! But it's adorable, and we love her so much.
Here's a photo of her sitting up in a high-chair at Mellow Mushroom on Mother's Day! Sitting in high-chairs at restaurants and in shopping-carts at the store have been big things we've been wanting to improve and they finally are. So excited!