Dang, where’d the year go?

Holy crud it’s almost 2017.

Vivian is 2.5 years old now. And acting like a threenager.

There is so much to update you on – I really don’t know where to begin this time!

Firstly, we’ve moved. We needed more space, and a house that wasn’t an oven in the summer time. We needed to reclaim our lounge as a lounge and not a therapy room.

We are smitten with the new rental. We would love to buy it one day.

Viv’s new room is a bit bigger than her old one, which is fantastic. We need a new bed for her already, as she fell out of bed the week before last. Her old room couldn’t accommodate a standard single bed.

Before you ask, her bed was on the lowest position, so she wasn’t hurt, just pretty scared. Thankfully she didn’t catch the corner of her side table with her face on the way down. Unfortunately the bed she has (which I adore, because it actually looks like a bed you’d find in a home, not a hospital bed) can’t be adapted to make the sides taller, so we’re looking at bigger, more long-term options.

She also has a spare bedroom all to herself for therapy and larger toys. It’s working out really well, and we’re not tripping over toys or equipment anymore. And the house isn’t cluttered because there’s actually room for everything to have a place.

Vivian is loving the new house as well.

She has changed so much in the last 6 months. When I look back at pictures of her I can’t believe how much younger and smaller she looked. And how much hair she has now. Curly, curly hair.

vivian-happy-stretch

Where to start on Vivian updates!

Neurologically: She hasn’t had a seizure in 2 years. Woo hoo! I need to get a picture to mark that special occasion. It’s hard to get a non-blurry picture now because she is so mobile!

She has an official cerebral palsy diagnosis. Her pediatrician actually listed it in one of her appointment notes and didn’t tell us. I questioned when we’d get a diagnosis at our next appointment, because I don’t bother reading the diagnoses list on her reports and she said she was sure she’d already listed it in previous reports. I was expecting at least some announcement of that to us as Vivian’s parents, but I guess she thinks we’re the type of parents to already know because we read so much. Not much ceremony to it. When I asked her what kind, as I thought she would say spastic quadriplegic, she said spastic or possibly mixed. Although now that I have read through the different kinds, I think Vivian would have double hemiplegia/hemiparesis.

What does that mean? There are a lot of different types of cerebral palsy, but this kind means that Vivian’s brain damage affects the way her body moves (the cerebral palsy part) in all four of her limbs (the quadriplegic part). And that she has mixed tone, or spasicity, in her limbs (the spastic part). So her arms and legs will often tense up, like when she’s excited or upset, or concentrating on something.  But because her right side is more affected than her left side, I think that’s where the double hemiparesis comes in (all four limbs affected but two on one side more than the other side).

Physical development: She is sitting up now! Mainly w-sitting, but sitting. And high-kneeling. And bouncing. And almost butt-scooting because her bouncing has such momentum :) I’m hoping she doesn’t figure out that she can butt-scoot because I do want her to crawl for a bit.

She is crawling, about three ‘steps’ at a time, if something is just out of arms’ reach. If it’s further away than that, she prefers to creep along the floor using her arms and dragging her legs. Still rolling all over the place, but now with much more determination and purpose.

She is able to stand supported and lean against things for a while now, and also able to sit on her foam steps.

vivian-sitting-on-steps-with-dad-and-mr-fox-crop

Her physical therapist sent back her standing frame because Vivian didn’t need it any longer and is starting to show signs of shifting weight from one leg back to the other, so the therapist thinks Vivian will eventually walk. She is not wanting to get Vivian a gait trainer just yet, because she thinks Vivian may lose the instinct she already has to shift weight and walk from her hips instead of starting to lead and walk with her hands supporting her weight on a gait trainer.

She still uses her left side more than her right. We are still working on trying to get her right hand into the action more. She has started weight-bearing on it and opening it up some of the time when she’s four-point kneeling. Her physical therapist and occupational therapist have ordered some new wrist braces for her to wear while she sleeps, as well as some neoprene braces to get her thumbs open more because Vivian prefers holding her thumbs in very close to her hand, even while grasping things. We should hopefully get those soon.

She is still in the same pair of Piedro boots we got last summer, but now she has Leap Frogs orthotics to wear in them as well, which provide more support around her arch and inner ankle area.

And she is very, very tall. She definitely has Ben’s genes in that department. She’s over half my height now!

Hearing: Vivian has started to refuse her hearing aids. We are not sure exactly why, but our guess is her hearing has improved. Her hearing specialists also think this could be the case, because her hearing loss is/was conductive and not neurological. We will be getting a new auditory brainstem response (ABR) test done when Vivian has dental surgery in the next few months.

 

She seems to hear her favorite songs if you sing the very quietly, but if you whisper, she doesn’t really respond, so I think that may be her threshold. I’m sure it’s more complicated than that but I can only go on what I have available to me (my crappy, off-key singing).

Vision: Vivian is no longer wearing glasses (she refuses). The ophthalmologist doesn’t think they’ll make any difference and is confident Vivian can see without them, so that could be why she is refusing them. He is also not concerned that one of her eyes still turns in sometimes, as it’s intermittent and not a permanent turn. He’s not worried about her losing sight in this eye or using one eye more than the other at this point.

We also went up to Auckland last month to visit the BLENNZ Homai Campus for an official assessment. It was pretty full on, especially after having to evacuate our home in the wee hours of the morning we were due to fly out. Vivian did amazingly well on the flight up and down, so well that we are planning to save up for a trip to the US, hopefully within the next year. We do think it’ll be easier on Vivian and us to travel while she’s young for such a long flight.

Merry-go-round! #spinning #hopeforvivian #blennz

A post shared by Gwen (@gwenami) on

 

We came away from that visit with an official cortical/cerebral vision impairment (CVI) diagnosis for Vivian, and confirmation that we have been doing a lot of great things already to aid Vivian’s vision. We also got a lot of good knowledge about how to continue improving her visual environment and how to help her knowledge of the world around her, which I might go into a bit more in another post.

Dental: Vivian has almost all of her teeth in now, except for 3 of her 2-year molars. She also has a temporary cap/seal on one of her front teeth and a failed one on the tooth next to that one. Her hospital dentist has put her on the waiting list to have her molars capped, because kids with HIE are more likely to have enamel defects like the one in her front teeth, in their molars.

vivian-smiledial-sensory-garden-sitting

It was very hard to take her to the appointment to get the temporary sealant put on, but Vivian did extremely well. I wish we could have explained to her what was going to happen, though. It was really rough to see her so unhappy but she recovered very quickly.

Getting her molars capped means she’ll be going under a general anesthesia, which is when the ABR test will be done as well. I also want to have her upper lip tie released during that surgery because it would make brushing her front teeth so much easier. I know that sounds horrible to say, but I think we could have prevented some of the decay on her front teeth better if she didn’t have this upper lip tie (it’s a pretty big one). The dentist thinks he may also need to pull the tooth that has the failed temporary seal on it as it has had some rapid decay due to the enamel defect on it.

Eating: Still on the soft lumps and no dry or finger foods. Vivian is also still at the point where she will guide a spoon to her mouth but will drop it immediately when it hits mouth-level. Or she will refuse to feed herself and throw a tantrum now if you ask her to. We have a lot of work to do in this area, and I pushed to get this as a main goal for her therapy this term, so I hope in 6 months that we’ll have made some progress.

I also want us to work on getting her to drink out of a sippy cup or a straw cup but I think that might be a year of work. There’s only so many hours in a day.

Prioritizing goals is a fucking bitch.

Communication: Vivian is still ‘non-verbal’, but she definitely can communicate in other ways. She tells us when she’s happy and when she’s sad, when she’s angry and tired. She definitely can say no. You can figure out what she wants, but only if you know what you’re looking for, unless it’s blatantly obvious.

 

We will be getting help from TalkLink Trust very soon on finding an augmentative and alternative communication (AAC) system to help Vivian communicate with us so she can say what she really feels instead of us only grasping the most basic of her needs and wants. So she can have her voice, as she should.

It’s very exciting and sort of overwhelming at the same time. It’s going to be a lot of work but it will be so worth it. Again, enough details about that to write a separate blog post really.

Overall health and sleeping: Still having major, nightly trouble with sleep and discomfort, and no closer to unlocking the solution. It sucks so bad to see her in discomfort at night and not being able to help. Her pediatrician wants to do a gastroscopy to see if it’s reflux-related. I would like to rule that out as well. We had another appointment with the neurologist who previously treated Vivian, to rule out seizures. He took a look at videos of her movements and determined it wasn’t seizure-related, as during the discomfort and kicking episodes, she’s still conscious and can coordinate a pacifier-finding mission while crying. We figured as much but it’s always good to get that officially crossed off the list.

Other than that, Vivian has been pretty good. We’re lucky to have only had 2 colds (that I can remember) this year, the latest one hitting last week and still lingering.

I think that’s everything covered. I am sorry for the lack of blog posts. I started a new job, in a new field, in June and it has taken some learning and adjusting to get settled in enough to have mental energy to do anything else than unwind when I got home.

We hope you have a very merry holiday season and a happy new year. We attempted a picture with Santa but the cold she got last week meant she wasn’t feeling it on the day we were scheduled to see him. We might try again this week.

Bring on 2017 and more milestones!

Two teeth and three weeks later!

I have the best intentions to post every week, or at least every two weeks, but last week snuck by really fast. Sorry for the hodge-podge of updates! Both Vivian and Ben had a cold, and much grumpiness ensued.

Vivian has still had no visible spasms or seizures. With just over a week to go until her birthday, I’m actually terrified at the thought of beginning the wean off of her anticonvulsant medication. I am so afraid that she will start having seizures again, and then on top of that, if we start her medication again, what happens if it doesn’t work this time? What happens if her epilepsy triggers the infantile spasms to come back?  I feel like we’re damned either way.

Either we continue to give her this heavy-duty medication while her brain is trying to develop, or we run the risk of seizures. And then if we don’t give her the meds and she has more seizures they will disrupt her development as well. I know only time will tell how long she will be able to go medicine-free and seizure-free. I hope it is a long time. I try not to dwell on the what ifs much.

Still teething: Vivian’s first tooth came through shortly after my last blog post. It’s a top right tooth, but not one of her two front teeth. The left one is still working its way down. Vivian still has quite a strong tongue thrust reflex so you really can’t see her gums ever. She also has a pretty big upper lip tie, so it’s really hard to get a good look at her upper gums without her getting very upset, so we mostly go by feel! Her top tooth is getting big enough to see it from an angle or two without having to move her lip up, so that’s pretty nifty!

Today we noticed she also now has a bottom front tooth that’s cut through as well; it was a very sneaky tooth indeed!  I thought I had felt something sharp a few days ago but didn’t see anything, and then today got a glimpse of white while she was eating and there it was. I have a feeling she’ll be getting a few more teeth in quickly now that the first few have arrived. Here’s to hoping we manage to get some sleep over the next few weeks!

Weight: We have a pediatrician appointment at the hospital tomorrow afternoon. The first in three months. I have no idea what Vivian will weigh, but I hope it’s enough to keep the doctor happy. We stopped recording her precise milk intake the week before last and it feels really weird not to record the volumes in my phone every time she eats. I worry that she’s not getting enough, but she seems to take enough every day, along with at least one meal of solids.

Everyone keeps commenting on how long she is. She’s been average for height at every appointment we’ve had. I think it’s because she doesn’t have much extra chubbiness to her?

Vivian Rufflebutt

Eating: Vivian is still doing well with very smooth purees like yogurt and custard, and our speech language therapist is still really happy with her progress. We also introduced another flavor – pear, carrot, blueberry and quinoa. We call that one “quinoa”, because if you call it carrot, she won’t open her mouth.

The SLT said it’s amazing that Vivian trusts us so much with her food, and that a lot of babies she sees will just shut down after you make them try a flavor they don’t like.  Whenever we feed her, we make sure to tell her what she’s eating; she definitely recognizes “yogurt” and “chocolate”, and we make sure to give her yogurt again after she tries something new, so she knows that we won’t force her to eat something that makes her gag.

Vivian Eating

Communication: The SLT has also recommended we encourage Vivian to use her voice more, so we play games where we’ll sing or do an activity and then stop and wait for her to tell us that she wants more by making a sound. We also play with her toys and if she touches them, we say, “Go!” and use the toy as well, so that she will know she can use her voice to play too. And we are trying to encourage her to say stop by holding up our hand and placing her hand to ours when we finish an activity.

We’re still getting some babbling “la la la” here and there, but not much more than that. It’s crazy to me to hear what neuro-typical (NT) kids her age sound like. And even more crazy to see how fast they are with fine motor skills. I think both Ben and I are in awe of how fast other babies her age are and how much bigger the gap is getting between Vivian and them.

Physiotherapy: Vivian has started reaching for things more with her right hand, which is exciting. We are still working on rolling from front to back and from back to front both ways, as well as sitting. It feels like we’ve been working on these things for ages. I guess we have. Still hoping one day we’ll get there!

Vivian’s wrist brace came last week. It’s a bit long for her arm, so we are only putting it on for a few minutes at a time to get her used to it for now.

We tried Vivian again in her high chair today, but this time we shortened the legs so that she’s only about a foot off of the floor, instead of up at the highest setting. She took it really well and played with a spinning toy that has a suction cup on it, to fasten to the high chair tray. She really likes this toy and will often reach for it with her right hand to spin it, which is awesome.

Vivian Spinning Toy

ACC: We were meant to have a meeting with our ACC case worker on Friday but it got pushed back to this coming Friday. She suggested that we consider some inpatient, intensive therapy in Auckland at the Wilson Centre. I don’t even know how that would work logistically at this point in time, with Vivian not sleeping through the night in her cot yet. Perhaps once we’ve mastered this transition. I never thought they would suggest it for us but maybe it will be good for Vivian. It also frightens me to think about going to another 24-hour care situation, with nurses and doctors. I didn’t realize it scared me until just now. Those memories of being in NICU and wondering when we would get to leave stick with you sometimes.

We also were informed that Vivian is entitled to attendant care hours each week, for the care that she requires which is above and beyond what she would need if she didn’t suffer her brain injury. This means we can get someone in from a healthcare provider to watch Vivian if we need to, who will be equipped to deal with a high needs child, and also that Ben can work as her family carer through the healthcare provider, and be paid to take care of Vivian for these hours and no longer has to work nights on the weekends.

This also means on the weekends we can all finally spend some time together instead of Ben or I having to catch up on sleep in shifts. It feels like a huge weight has been lifted for Ben, but also for me as well. It really didn’t seem worth the money for us to be so stressed over him getting enough sleep for work, or the risk he took working security every week.

Vision: We are now waiting on a report from BLENNZ to find out whether they think Vivian has some degree of CVI. If she does (and I’m pretty sure she does), I think she’ll be invited for a proper assessment and therapy in Auckland at some point for this as well. That’s probably a long ways off, though.

We are also waiting for a follow up appointment with the ophthalmologist in Christchurch Eye Clinic to find out whether Vivian will need surgery to correct her strabismus (Vivian’s eyes not lining up all the time). Another thing I’m trying not to think about! :)

In the mean time, we have been looking at finding toys for Vivian that offer a lot of visual stimulation – reflective toys and toys that light up. We also think that she is attracted to yellow and red toys more than other toys (common for babies with CVI), which would explain why Mr. Snail is her favorite toy and she’s taken a liking to a yellow plush toy by giving it kisses and drooling all over it (she doesn’t do this with any other toys).

Mr. Snail

Hearing: Vivian has some sparkly new hearing aid molds, and her ears continue to be nice and clear every time we go to her hearing appointments. She is getting harder and harder to distract during these appointments though. They suggested we bring in her favorite toys, since she really doesn’t take to new toys like NT kids would, probably due to her vision impairment. She likes familiar things.

We aren’t due back for another month, so Mr. Snail will come with us to the next appointment. Writing about this now has made me think that her reaction-based hearing test has fallen through the cracks, as we haven’t had to do the puppet thing again since the first time. Will call them and query this tomorrow, as I know the specialist wanted her back at least once a month to do the puppet thing, so Vivian would remember it instead of waiting two or three months before doing it again and her having to relearn.

Phew! I think that’s everything! Hopefully my next post will have some good birthday pictures. We decided to invite some folks over to celebrate and we’re not sure how it will go with our house being so small. We wanted to make sure we could calm Vivian down if she gets worked up, so home was the best place to be able to do that.

Hugs from us to you! Please leave us some comments and tell us what’s happening in your world.

Missing Ophthalmologist Notes

Skip this post if you want updates on Vivian – this is more about the New Zealand medical system and how frustrating it is at times. I will be writing a Vivian update post tomorrow, I promise!

I have started the referral process for Vivian to be assessed by the Blind and Low Vision Education Network New Zealand (BLENNZ) for corticol vision impairment. I had no idea I could start this process myself and was waiting for the ophthalmologist to test Vivian for this but he didn’t. I would rather try and get a diagnosis early on so we can get some vision therapy in place sooner rather than later but he and our neurologist seem to think it’s far too early to test for this, although they have both said repeatedly that she will undoubtedly have some degree of it.

Before I realized I could self-refer Vivian, I’ve had to call the hospital’s eye specialist clinic at least a half a dozen times to get the notes/records sent to me from the appointment we had in February. They initially sent me a letter that they also sent to Vivian’s pediatrician, but I wanted another copy of her prescription for corrective lenses and any notes he took on the tests he preformed, so I could forward them on to BLENNZ with the referral form.

After a few more increasingly frustrating phone calls wanting to speak to the opthalmologist to ask why he didn’t test for CVI, I received a phone call from the opthalmologist that I sadly missed, stating that he would move up our follow-up appointment (originally set for 6 months away) and that he didn’t feel the need to test her eyes for CVI until she was 18 months old.

Well, the eye department couldn’t even produce this. They referred me on to patient information and said I would need to request the records from there (with a release form). I did this and they sent me the same letter I had already been sent… This lead to more emails between myself and patient information, who were waiting on the eye department to find the notes, because apparently I should have called the eye department for these. Hello? I did. Numerous times! They told me to call patient information!

Finally we end up with a new letter from the opthalmologist, addressed to me on 1 April…stating that there seems to be some question of whether Vivian actually needs corrective lenses (there is no question about this in my mind? I never ever insinuated that there was) and whether the corrective lenses would help with her strabismus. He then wrote that her prescription was +1.50 in each eye, which is very ‘weak’, and said that the lenses wouldn’t make a difference in the strabismus, so she didn’t need to wear them all the time if they were causing her any sensory issues.

Honestly, I think he wrote this off the top of his head, to cover his ass, and that he probably didn’t even take proper notes at our appointment. I got the optometrist to send over a copy of the prescription we’d brought in. He originally gave Vivian a prescription for +3.50 in each eye, a much stronger prescription than he is stating in the letter. The optometrist who fitted her glasses said she should wear her glasses “every waking moment”. What in the honest fudge – are we even talking about the same baby? I called the eye department again and informed them of my serious concerns about this incorrect information. Of course the opthalmologist is now on holiday until next week so we will not know if Vivian even has the correct prescription until he gets back. I’m assuming she does have the correct prescription and he was relying on memory to write this letter, as the eye department cannot find any further notes from the appointment.

Baffling. And ridiculous. And a complete waste of my time and their time. The good news is the BLENNZ Christchurch folks have contacted me and they’re coming to assess Vivian in May.

I honestly don’t know how parents are meant to navigate this system without giving up out of sheer frustration. If I wasn’t so persistent I really feel like not a lot would be done for Vivian. Super frustrating, and super tiring. It should not be this difficult.

9 Months Old

Vivian was 9 months old yesterday.

Pretty soon our wee Vivian will be outside of me for as long as she was inside of me and I can’t get my head wrapped around that. I can still remember what it was like to be pregnant and so happy. I am happy most days now but about different things than I anticipated being happy about. Different achievements than those I thought I would be celebrating at this time.

It seems like so much has happened in the 2 weeks between blog posts, I don’t know where to begin! Apologies in advance for the novel!

When I last posted we were gearing up to go to her next pediatrician appointment. So those updates first: Vivian is now over 7kg at 7.33kg, which puts her at the 20th percentile for weight. For you Americans, that’s just over 16lbs. And she had gained another inch and a bit (around 3cm), which would be why everyone we see keeps telling us how ‘long’ she’s getting!

Vivian Sleepy Feet

The pediatrician wasn’t concerned about her weight, so we are to keep on with the breast milk for now and don’t have to worry about fortifying it. We have been very lucky to not have run out of donor milk. The right amounts keep coming in; small donations here and there have been keeping us going. Thank you to our wonderful, wonderful donors. You women are so amazing.

And the doctor doesn’t want to see us again for 3 months! That’s the biggest gap yet between appointments. Hurray! I told her to please not take any offense, but I was so overjoyed at that news.

The only thing of concern that she mentioned is Vivian’s head has still had minimal growth. I think she’s in the first percentile for head circumference now.

The pediatrician asked how Vivian’s ophthalmologist appointment went, which we thought went well. I’m concerned now that the tests that the doctor did didn’t really investigate whether Vivian has CVI.. The more I read about it, and the signs that kids who have it show, the more concerned I am that Vivian does have it. I have requested a follow-up sooner than 6 months away with the ophthalmologist because of this.

We picked up Vivian’s glasses last week and she absolutely hates them. With a passion. Every time we put them on she freaks out, because they’re on a band that goes around her head. First she freaks out because you’re touching the back of her head with the band, then she freaks out as soon as you slide them down on her face. Then she freaks out when she realizes things look different. There was a lot of freaking out and eyes squeezed shut over the past week. She would only tolerate them on for maybe 5 minutes at a time. At one point the little lenses were fogging up because her face was too warm and they’re so close to her eyes.

But today, she watched a Baby Einstein video (yes, we know screen time should be limited for babies. We used to just play it for her while she was in her bouncer because she liked the songs on it) and she watched pretty much the whole thing with her glasses on. And she didn’t mind when I readjusted them a few times, which was shocking. She also picked up a toy when her hand hit it and actually looked at it,ever so briefly, which is amazing.

Vivian Glasses Pondering

And Dad even got smiles out of her with them on.

Vivian Glasses Dad

Since I last posted, Vivian has also gotten her new hearing aid molds! They are ‘candy apple green’ and are so much bigger than her last pair; you can really see how much her ear canals grew during the holidays. They’ve also been turned up to 100% now, so Vivian has as close to normal hearing as we can get with them in.

Vivian Almost 9 Months

While we’re on the topic of hearing, one of Vivian’s favorite things to listen to at the moment is the Laura Veirs “Tumble Bee” album that an anonymous gifter sent us, along with an awesome Busy Bee bib with soft purple backing that Vivian loves. Ben and I really enjoy listening to this album as well and are often singing the songs to Vivian. She always smiles as soon as we start singing a familiar song, which is such a wonderful thing to see. Whoever you are, thank you very much! Vivian loves both items and so do we :)

On the therapy side of things: we were loaned the Lackey Squiggle Early Activity System to try out for a week to see if we wanted one ordered for Vivian. It is pretty awesome and we believe it will be really helpful for Vivian to learn how to bear weight on her hands, elbows, and knees; how to use her hands more; and how to sit up.

Vivian Squiggle Early Activity System

We were also given a ‘corner chair’ which we can strap Vivian into (loosely) which will help her learn how to sit up too. It’s a high-backed wooden chair with slight sides, and no legs. A table that goes with it was dropped off today and Vivian really took to banging on it with her hands and picking up toys to bang on the table, now that her toys are within easy reach.

We are still working on rolling front to back, and back to front to the left, since Vivian is stronger in her left side and doesn’t like to bear as much weight on the right arm. She has also started bearing weight on her feet if you stand her up, which is exciting. She loves to play a jumping game where we slowly make her jump up and down while singing, “Vivian is jumping, jumping, jumping! Vivian is jumping, just like that!” and she gets really excited. I’ll have to try to get it on video so you can hear her squealing with laughter.

I would say she might actually get to use a jolly jumper soon, if she keeps showing improvement there. I never thought she would ever be able to have fun in one of those.

As far as seizures go, we haven’t seen any spasms, and Vivian has only had a few suspicious movements that do seem like an exaggerated moro reflex startle. If I move very slowly during her first nappy change, they don’t happen at all, so they may not be related to infantile spasms at all. If this is the case, it’s been almost 6 months since her last cluster, which is fantastic!

It’s hard to believe in three months she’ll be a year old. It does go so fast.

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