Tantrums, Teething, and Terrible Sleep, Oh My!

Hey there.

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!

Trying out her #GoTo seat! ##hopeforvivian

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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.

Vivian Practicing Sitting on a Solid Surface

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?

Vivian Standing and Leaning Against Entertainment Unit

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 :)

Sneaky filming #babbles #hopeforvivian

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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?

#hopeforvivian

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Hoping all is well in your world! Much love from us to you.

3-Month Catch Up!

After my last post I sort of buried my head in the sand for a bit and let three months fly by with no updates. Oops.

Work has been very busy and I’ve become a Jamberry Nails independent consultant, which has been great fun so far and has given me some me time back. It’s been awesome having kick ass nails at a discounted price, too! Makes me feel more human on the bad days. I’ve also been going back to the gym, on days where Vivian’s gotten good sleep the night before, which hasn’t been a lot lately, but the past couple of weeks have been better.

It’s hard to remember what has happened three months ago, so this will be a bit jumbled.

Firstly, Vivian hit a year seizure free! Exciting!

Vivian One Year Seizure Free

 

Sleep (and other stuff) update: In early October we got her MMR vaccine, so she’s now caught up on all of those. That went as badly as you could expect – spotty rash about a week later. A few days after that a fever and just very grumbly overall. She had some good sleeps after that where she slept through from about 6pm to 6am and she was like a different baby the next day. So relaxed and chilled out compared to usual, and so much more focused during therapy. If only every night was like that!

Her first four molars came in around this time, so sleep again went out the window. Currently, only her bottom two molars are all the way through. The top two are taking their sweet time! Ben also was having teeth trouble of his own and was at the dentist every week for about 4-6 weeks straight. Fun times all around!

In late October, early November, Vivian started getting really constipated and having trouble with hard, formed stools that she really had to work to get out. Around this time she started sleeping even worse. Late night parties, crying, kicking, back arching. It was not fun at all. I thought it could’ve even been restless leg syndrome or spasms waking her as she genuinely was upset and not just wanting comfort and she would doze off and then jerk awake by bringing her legs up to her stomach. She was definitely in pain a lot of the time and it was really hard on all of us.

It was so obvious she was exhausted and wanted to go back to sleep but none of our normal tricks were working (singing, rocking, bouncing). It really took its toll on Ben and I, but mostly Ben and Vivian, as he tried to let me sleep because of work, bless him.

We had a check up with our hospital pediatrician in November, but saw one of the doctor’s registrars instead of our actual pediatrician, because she herself was sick. The registrar suggested we up Vivian’s Lactulose dose from 12ml a day to 20ml to help pass the stool. We were concerned about this as Vivian already struggles to get enough fluids in. We are still working on teaching her to drink water from a cup and she refuses water from a bottle. Lactulose should be taken with a full glass of water because it sucks the water from your system into your bowels to soften your stool.

Well, after this, her sleep got even worse. She would bring her knees up to her stomach and just thrash around and cry :( At this point we didn’t realize it was probably the Lactulose causing her to have stomach cramps and really bad gas. Someone suggested we ask our therapy team if they had any continence nurses who worked with them. Normally continence nurses don’t see children as young as Vivian, but when the nurse heard that Vivian was on such a high dose of Lactulose, she was quick to say that amount would cause even an adult to have some really painful side effects and suggested we try a different medication, Movicol.

So we did, and the result was pretty much immediate. Over the past two weeks we’ve had a good handful of sleep-throughs after some early waking for a bottle, which we haven’t had for almost three months. It’s been great! And Vivian’s had softer, more manageable stools. Winning all around.

Equipment update: Vivian got her new bed in the end of September; it’s fantastic. We transitioned her from the hammock over to the new bed pretty much straight away and she took to it really easily within the first night of trying. I got over my mopey feelings about it once I saw how happy she was in it.

We also got a GoTo Seat for Vivian, but haven’t really had a chance to get out of the house and use it anywhere! As soon as we got approved to get this seat, the makers released the new and improved version (that isn’t available in NZ yet, boo!), so Vivian has the older version. It’s basically a portable, high-backed seat with a five-point harness and sides that come in slightly to keep Vivian from slouching to either side.

And we are still working with Vivian to spend time in her standing frame each day. We ended up keeping the second one we tried, which is on wheels and has a removable tray that can be angled towards Vivian. It’s a better model than the first one we had (not on wheels, no tray/work space attached).

Vivian Standing Frame

And Vivian has some new kicks for the summer, a sandal version of the Piedro boots she was wearing over the winter. These are only on loan until we get the pair on order for her in the next size up; fingers crossed she doesn’t wear them down too much in the next few weeks!

Hips update: Back in October (or was it September?) Vivian was examined by the “hip lady’ – a physio who specializes in orthopaedic health (I think?), to see if her hips were developing correctly. She wrote a letter about her exam…which explained how Vivian’s hips flex and at what angles and a lot of stuff I don’t fully understand. She didn’t seem too concerned with Vivian’s range of motion, but because Vivian isn’t walking or crawling, referred her for hip x-rays.

Apparently a letter was sent out to us with a date for said x-rays but it never arrived (surprise, surprise) and thankfully the hip lady followed up on Vivian missing the x-rays with our therapy team at the Champion Centre. If you miss an appointment here, nobody calls you. You’re labelled as a ‘no show’ and it’s up to you to get referred again and rescheduled for a future appointment! Pretty awesome, considering we had no communication reach us about the appointment, right?

We mentioned this to the registrar at Vivian’s pediatrician appointment and she was able to pull some strings and get us in for x-rays that afternoon while we were at the hospital. They came back fine, from what we’ve heard (no news is good news?), so it sounds like Vivian’s hips aren’t shallow or at risk for dislocation right now. Given how many times we’ve fallen through the cracks in the system, I’ll be requesting copies of the notes to see anyway, for my peace of mind.

Weight and height: I think I mentioned previously that we were still working hard at getting Vivian to gain some good weight – we’re still working on this, but the dietitian is happy with our progress.

Longlegged Vivian

I can’t remember how much she weighed at the doctor appointment, but I think it was just under 9kg (so she’s finally doubled her birth weight!), and she is 80cm tall. Half my freaking height, and not even 2 years old. Ridiculous. Thanks, Ben’s genes! So she’s in 18-month sized clothes right now, which are loose on her but tall enough for her. A string bean, she is.

Eyes update: At our last ophthalmologist appointment, the doctor downgraded her lenses to a weaker prescription. We got transitional lenses because Vivian’s eyes are still pretty sensitive to sunlight. I really hate them because they’re dark even indoors and we usually put her in sunglasses outside anyway. He also said she most likely wouldn’t need surgery to correct her strabismus but it’s not always very apparent, and I’m wondering if it wasn’t really on the day he saw her. When she’s tired, very excited, or focusing on something very close to her face, there is still a strong inwards turn to one or both of her eyes. Another thing for me to follow-up.

Vivian Reading BLENNZ Book 2

BLENNZ sent some really awesome, handmade books made especially for Vivian from the Jellybean Club (I’m guessing it’s a group of lovely individuals who volunteered their time to make the books for kids with vision impairments).

They have lots of textures and just one main image/item on each page, which makes it easier for Vivian to see in comparison to regular books. She adores them and will spend up to an hour exploring them with her hands, but mainly her tongue.

Vivian Reading BLENNZ Book

Eating update: Vivian is still going strong on eating soft solids and we’ve mastered the art of eating soft lumps in her food as well, as long as the food itself is pretty wet. She still doesn’t like to really touch her food or bring it to her mouth on her own, but is pretty accepting of almost anything on a spoon.

Vivian Eating Al Fresco

On Christmas she tried her first taste of turkey, and scalloped potatoes (with ketchup, of course). She definitely loves ketchup! Turkey she could take or leave. With foods like that, we have to actually give her a very tiny piece and shove it past her tongue, into the side of her mouth, or she’ll just spit it out when she thrusts her tongue.

She’s started liking oatmeal for breakfast, with finely chopped dried cranberries (it’s what I could find in the pantry). No cinnamon though! It’s the only thing we can peg down that she dislikes in store-bought baby food.

Therapy updates: Vivian is rolling both ways like a champ now. Shortly after my last post she really started going for it! Sometimes she still gets her arms stuck behind her when rolling from front to back and I fear she’ll dislocate her shoulder because she just keeps trying to roll over on them. I think we need to work on this while I’m home this week. Here’s a video from the week after she decided she wanted to roll both ways:

We’re still working on sitting up unassisted, but Vivian is making some good strides there. Last week, she sat unassisted for about 15 seconds, which is her current record. We’re also working on getting her to open her right hand and bear weight on her right arm while sitting, and working on developing her protective reflexes that would mean she could stop herself from falling over while sitting. It’s been slow going in this department but she is bearing weight more and more on her left side. We hope her right will follow.

Vivian Sitting at Champion Centre

Now that she’s rolling both ways, she’s spending a lot more time on her tummy than before, and is starting to bear weight through her left arm and push her torso up. She has been opening up her right hand a lot more than before when on her tummy and reaching with her right, which is great. We also want her to bear weight on her right arm here, too. She’s also been bringing her knees up every once in a while, but never while she’s bearing weight on her arms. One day, we hope! Then she can start rocking and that leads to crawling.

Vivian has started seeing an occupational therapist (OT), who is really lovely. Vivian adores her and I think the way she approached Vivian initially has a big part in this. She wore the same top every time she came over, and always approached Vivian from the same side, and never ever got right in her face, taking into account Vivian’s CVI (corticol vision impairment). She is working with Vivian to get her to understand her own body and to explore new & different toys, and is also completing a sensory profile on Vivian.

Vivian’s speech language therapist (SLT) has given us Vivian’s very first switch, which we can record messages on. We are working on Vivian calling us using the switch; so we might record Ben saying, “DAAAAAD!” and if Vivian is playing on the floor in the living room and she hits the switch, he’ll come in and see her. This is only a week in so we haven’t seen much to report back with but will keep you posted.

Other fun stuff: 

Vivian likes to finger paint! She tried it for the first time at the Champion Centre back in November, to make some Christmas decorations, and we’ve done it again at home with her once. Will be doing a lot more :)

Vivian First Fingerpainting at Champion Centre

We went and saw Santa for the first time in early December at a special ‘Sensory Santa’ session. They booked appointments for kids like Vivian before the mall opened, so no crowd, no mall music, and no waiting in line. She had a hellish night before so I was going to take her by myself and let Ben sleep, but he joined us and it went really well.

Vivian's First Picture with Santa

She was a bit of a wiggle worm and although Santa had her on one leg at first, he ended up having to hold her pretty securely in the middle of his lap to keep her from arching backwards. His beard was pretty funny and it looked like it was tickling her so she had a bit of a grin without us needing to get her to smile, which was great because I had to stand so far away from her I couldn’t even get her attention. The sounds were bouncing around the open area of the mall and she would’ve had a really hard time hearing us trying to get her attention.

She fell asleep immediately after getting her picture taken and we walked around the mall while she slept. Ben and I grabbed breakfast together in the food court and it almost felt like a date. It’s the first time we’ve actually been out and about, like a normal family, instead of going to and from appointments with Vivian. It’s hard to believe we’ve never taken her to the mall, or even into a grocery store before that day.

We had a quiet Christmas at home with Vivian; we’ve just been focusing on making every day a good day while I have time off of work. Ben’s parents came over to exchange gifts and brought us some really yummy food and then headed to Ben’s brother’s for Christmas lunch. We would’ve gone, but our car is in the shop and Vivian’s car seat is in our car. I got to catch up with my family back home via Facetime on Boxing Day, which rocked, and Vivian and I have been taking walks every day. It’s good exercise for me while I can’t get to the gym and it’s great to get Vivian to sleep :)

PHEW. I think that’s it. I’m sure there’s heaps I’ve forgotten.

Wishing you a very happy New Year! Much love and drooly kisses from Viv ;)

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