It's been a while since I did an update about Juliana. I think about blogging about her more, but I'm often met with my weariness in writing out this situation that continues on. She's 6.5......which means it's been 5 years since I first noticed something was not right in the "hiccups" she had. The first several years held so many medical tests and medications it felt like we lived at the doctor. As options ran out the appointments also slowed down. While I'm grateful for her sake we don't go as often, it's a sad feeling to know we've hit the end of the line. At this point, no one has any more ideas or options for her and yet her bad spasms remain. 😒We met with a neurosurgeon at UCSF last month to talk about a much more invasive option. It's called a VNS device, commonly used in children and adults with epilepsy. The device is surgically placed in the chest with chords going up into the neck.
It is activated when someone is having a seizure to stop it the seizure - the device can often even detect what the heart does before seizures and stop them before they even begin. Think of it like a room of chaotic kids and then the teacher claps their hands. It kind of *claps* everything back into order and typically stops the seizure. Since she doesn't have seizures, and they don't know what her body is doing, we went into the appointment pretty skeptical. No real surprise the neurosurgeon (rabbit trail...........haha never in all the appointments have a met a doctor so well dressed haha! nicest suit, shoes and watch I've probably ever seen......chaaaaaching. jk. kinda) anyways, he was all for it. He told us he does dozens of these a year and considers them very "low risk".........however he said himself that he's a brain surgeon so everything seems less stressful than that. The doctor who came in before him was very hesitant about the idea. They said they've never seen something like what Juliana's body is doing so it's basically like flipping a coin and hoping it works. After a couple days praying about it we just don't feel like it's the best option for her right now. The device is risky to remove so if it doesn't work we are looking at two possible surgeries that have no guaranteed benefit.
These past few weeks have unfortunately been really bad for her which is probably why I am blogging about it. Where often we get 4 days between spasms she's been having them 2 days apart then for a solid 2 days they are going. sigh. It's hard that as she grows she's able to tell us the pain they cause and how she wants them to stop. Before she was talking so well she couldn't express that so there was a thought that maybe they didn't bother her so much. We are really careful to not make it into a big deal. Kinda like "awe man sorry those hiccups hurt! They will be gone soon I'm sure" -- hopefully I hide the anxiety they still give me watching her spasm like that. She's also going to have to grow knowing this is something that we pray about and yet the Lord is allowing this to happen in her life - I pray that we can lead her through that well as it's exactly what I've had to go through for the last 5 years! There's a lot the Lord is still teaching me about this ongoing burden that I'll share soon.
Her EOE (esophagus disease) remains the same and we take scopes regularly to check the inflammation level. She's only Gluten and Dairy free right now and it's made life much much easier for mama!!
❥Encouraging things about our sweet Juliana❥
She's growing bigger and taller!
Her speech has improved so so much. She's been working with the same therapist for 3 years and she's been working with her Apraxia so well.
She's doing so well in school :) Writing and reading!
She's in swim lesson and ballet and loves both!
She's the BEST big sister around and loves her brothers :) We are so lucky to have this lil lady in our family.
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