You know it’s been far too long since my last post. Why do I always feel as though I’m doing that Catholic thing at the beginning of my posts? It’s been 4 months! I am sorry.
Reading back through my last post, there is a lot to update you on, but it can be summed up with the title up above.
Vivian is doing really well in the big scheme of things.
When you get down to the nitty-gritty, though, she could really use more sleep. We all could! I know this rings true to parents everywhere, whether you have a child with special needs or not. It’s just become such a constant struggle for us that we’re back to survival mode some days.
Sleeping update: Ben and I are back to sleeping in shifts to make sure we’re both getting some decent blocks of sleep. It’s working for now.
Vivian seems to be having some real discomfort still some nights, with kicking and screaming, but not wanting to actually be awake. She keeps her eyes squeezed shut. No amount of singing or reflux medicine, bouncing, or swaying helps. It’s completely different to the nights where she’ll wake up with a snicker and a smile and you know you’re going to just have to let her kick the energy out at a 1am party for an hour before she’ll go back to sleep.
My money is on some sort of restless leg syndrome, Ben thinks it’s stomach cramps again. Our pediatrician isn’t too concerned either way, which leaves us feeling a bit crestfallen. She did suggest we move Vivian’s daily dose of omeprazole to dinner time, to see if that helps, but we haven’t noticed a major difference. We are keeping a sleeping diary and will see her again in a couple of months, where we’ll bring it up again. And maybe push for a sleep study.
Her motility seems OK though, but I guess it’s fair to say it will always be an area where we’ll always need to remain vigilant. It still could be causing some of the discomfort, even though it seems to be under control with the movicol.
Our ACC case worker is really pushing for us to go to Auckland for inpatient therapy and getting a sleep study done while we’re up there. I am now in between jobs so I don’t know if/when this would be possible but it’s an option. We’re just not sure it would really help any more than what we’re already going on the sleep front.
We’ve already had a psychologist come out and speak with us and go over exactly what we do when she wakes at night. She agreed that we’re already going all the ‘right things’ – not going to Vivian unless she is escalating/actually in discomfort. Some times she does self settle but it’s usually if she wants a bottle…and we have always wanted her to have as much of that as possible to keep weight on. We are not advocates of any form of controlled crying or cry it out sleep training, so that is not going to work for us if ACC suggests it, and I’ve made that quite clear.
This is not a behavioral issue or a habit that needs ‘breaking’ by a sleep consultant. This is a physiological issue. Letting her cry it out is not going to help anyone.
Equipment update: We finally received Vivian’s new pair of shoes from Orthotics in March, after a few mishaps with ordering and shipping before Christmas. I think they may be a bit too big though! Will be getting her PT to have a closer look this week to make sure her insole and ankle is receiving enough support.
We have tried several times to get Vivian out and about using her GoTo Seat, but haven’t really had much success, until this week, when Ben and I both had enough energy and free time to get Vivian out for a short shopping excursion! For socks! Woo! I like socks. I’m one of those people that is happy to get socks for birthday or Christmas gifts.
It was all very exciting, but it looks like Vivian’s had enough of a growth in height to now be too tall for the current size we have! Her shoulders are a bit higher than the highest shoulder strap setting now, but we managed to squeeze her in and get the seat adjusted to the shopping cart. She seemed to really enjoy her legs swinging free and didn’t make hardly any fuss as we browsed the aisles like a (somewhat) normal family. It was pretty neat. She did give us some babbling about halfway through and some short, sharp exclamation that it was time to go, and so we left in a hurry!
Ben and I were really stoked to discover that she’d tolerate sitting in the shopping cart and the bright lights and all of the visual stimulation of a store though. It’s good to know that she can go for short trips. I think any longer than 20 min or so and she’d be yelling at us. An adapted pram or stroller might be better for longer trips, as it would support her sitting better. We are in the process of applying for funding for one of these with the help of Vivian’s OT and PT.
We also have an Upsee on order. Vivian really took to the sample one we trialed about 8 weeks ago. I hope it arrives soon! At this rate she will grow out of the size 1 and need a size 2 by the time its delivered.
Therapy Update: On her gross motor skills, here’s no stopping Vivian from rolling everywhere in the lounge. She also now works her way forward by arching back and forth, up to the TV unit, which is her favorite thing to play with at the moment. It has a small rolling partition that she enjoys rolling back and forth.
We’re still working on unassisted sitting for longer than a few seconds, but it’s coming along nicely!
And HUGE progress: Vivian has started to lean on things while standing! Ideally, against something that is about underarm height for her, and only for 5-10 seconds at a time before she needs some feedback from you giving her knees or hips a bit of a jolt, but how awesome is that?
Our PT from the Champion Centre wants us to continue working on this weight bearing outside of her standing frame, as well as still working with her standing frame, to increase her standing times each day.
She is also propping herself up on her arms while laying on her stomach a lot more than before, with both arms sometimes, instead of just with her left, which is awesome. And yesterday we caught her doing that and also bringing her knees up under her stomach, so perhaps crawling isn’t completely off the cards! She is doing the right sort of preëmptive movements to support commando crawling and getting into a sitting position from stomach/side lying. We just need to pay close attention and help her into a sitting position when we see her making a certain scrunching movement, so she doesn’t lose the inkling to do it along the away, since it could be ages away. It’s a bit hard to explain in text form; you’d need to see it to understand what I mean.
On her communication, Vivian has been making some awesome progress with anticipating patterns and making choices with switches (when she’s in the mood, which isn’t often). We are working towards having her read a book with us – where she can hit a switch to read a certain part of the book that is always the same. The same goes for learning to sing a song with us using a switch – maybe ‘Baa Baa Black Sheep’. We haven’t *quite* gotten there yet. But it’s a work in progress, as always :)
And we get a lot of babbling with her ‘da da da’ sounds. Sometimes they almost turn into soft ‘th’ noises, because her two front teeth are getting longer, but it’s still pretty much the same. I will never stop thinking this is the cutest thing ever. We have long, long conversations back and forth about Dad :)
Hip/bone Updates: We’re due back for another round of x-rays in 2-3 months. Continuing with weight-bearing to help build bone density and hip development, and supporting shoes to help Vivian’s arch form and make sure her ankles and feet are aligned correctly for standing.
Feeding & Weight Update: It doesn’t seem like anyone is concerned with Vivian’s weight falling off of the growth chart any longer. She is over 10kg at the moment! And a string bean. All legs. 84cm tall.
As far as eating goes, she is starting to accept a wider range of flavors and textures, as long as they aren’t too far away from baby food/overcooked pasta type textures. It’s fantastic!
One downside is that Vivian no longer wants to touch any food, or even hold a spoon – she expects it to come on a spoon and only a spoon. Our next therapy plan involves overcoming this aversion to touching messy things and trying to recapture Vivian’s natural desire to feed herself that she used to show. I am afraid we have created a big long road ahead of ourselves in this area. When we started Vivian on solids, we were so concerned with her actually eating and gaining weight that we concentrated on finishing the meals (on top of all the other therapies we needed to do) and didn’t really give her time to try and get involved when we should have. It sucks.
But a slightly amusing note on feeding is that Vivian will often throw a brief 30-second mini tantrum when she realizes her meal is over. It doesn’t matter how much you feed her, she will sob when she sees that you’ve put her plate and spoon down and that you’re getting ready to say, “finished!”
Eyes Update: We had another ophthalmologist appointment last week and he’s told us we can give up on the Vivian’s glasses for now. He doesn’t think they are really going to make a difference at this point with her eye turning and her weaker vision in the right eye. He wants us back in 6 weeks to have another look at her right eye; if he is still concerned, we may start using dilating drops in her left eye to allow her brain to use her right eye more. I am worried about this. It’s hard not to worry.
Ears Update: No real news here. Same old same old – Vivian wears her hearing aids for as long as she’ll tolerate them each day. Some days this is more than others.
I think I’ve covered everything that needs covering. But so much has happened in the last 4 months!
It’s hard to believe that Vivian will be 2 years old in June. Where did it go?
Hoping all is well in your world! Much love from us to you.