Almost Three

We have an almost three-year-old.

That’s hard to believe! Almost all of the kiddos in our due-date group have turned three over the past couple of weeks. I think Vivian was the last baby born out of the group.

Vivian’s birthday is a bittersweet thing for me. It’s a reminder of what happened to her, and a reminder of where she’d be at in life if her birth injury hadn’t happened. I give myself about 5 seconds to be sad about that now. Instead, I celebrate how far we’ve come and how happy she is and how much joy she brings us. I love her so much.

A lot has happened over the last 6 months. I always mean to write more blog posts than I actually do. She keeps us very busy.

I usually skim my last post to see where she was last time I wrote and this time, so much has happened since then. It’s pretty amazing.

Let me see where to start…

Big things:

In my last post we had just been up to BLENNZ Homai Campus in Auckland, where Vivian got her CVI diagnosis, and were expecting a referral to the Wilson Home Trust soon. That took a while to come through, and we finally went up this month. Ben and Vivian stayed up there for 2 weeks and I was there the weekend we flew up, the weekend in the middle, and the final weekend we came back. It’s a truly lovely place to go (location-wise) and they do a lot of good for a lot of children with disabilities or injuries, but we are so glad we’re home. We learned a lot up there. Ben learned a lot up there. Vivian really loved it. She was super happy most of the time, and just so engaged the whole time with the therapists and the people she met. It was really amazing.

We are also being referred to new pediatrician. We don’t know who this is yet.

Vivian had her dental surgery to cap her molars – it went really well, and the dentist even put white caps on her front top teeth too (and didn’t have to pull the one that had the big enamel defect and decay), hurray! So she has a beautiful smile (which I am so thankful for, because I hate my teeth), but when they first put her under, they noticed her tongue moving independently when she should have been completely out. The dentist and anesthetist thought it could be seizure activity, but the pediatrician wasn’t too concerned, and we haven’t even been given a reply after trying to contact our neurologist. Very thorough follow up there. That being said, we don’t think we’ve seen any seizures from what we can tell, and the pediatrician seemed to think it could be a retained reflect that infants have…I have no idea. It was unsettling on the day. She recovered pretty well afterwards, although coming out of the GA was terrible for her. She was so unhappy and just writhing for 3 hours until she passed out from exhaustion.

We also had the gastroscopy, which showed no damage to her esophagus and the biopsies they took came back normal. So no reflux. We have taken her off of the omeprazole and have seen no adverse effects.

We had a consult with an orthopedic surgeon, who thinks at the moment we should wait and see with her hamstrings and how tight they are. Her hips still look good from her latest x-rays as well. We may eventually try botox in some of her muscles to help her gain more range with sitting though, if he thinks it’s necessary. She has new ankle-foot orthotics too (all the way from the good ol’ US of A) that have a hinge on them, which means they give her a bit of flexibility when she’s crawling and sitting, but are supportive enough (I hope, but maybe not) to keep her ankles at a good right angle and aligned when standing.

We also have been referred to the Sleep Study department/clinic (after not thinking we would be), to see if a sleep study can be done on Vivian to get to the bottom of the discomfort at night.

Physical & neurological development: Vivian has started confidently crawling when she’s on the floor. Crawling out of her play room, into the hallway. Yelling at us if we don’t come to see what she’s up to fast enough. Crawling to the front door and licking the glass on the window (oh how she used to love the sliding glass door in the old house). We have a button on that front door that says, ‘Front door!’ when you press it, so she knows where she is. She likes to press this button.

She will sometimes crawl out and back into her room or her play room, or her bedroom. But every once in a while she heads towards the front of the house and ends up in the office, which she thinks is pretty boring because it’s dark. She likes to crawl to the light sources. She will not, however, pass from the hallway into the kitchen, because she doesn’t like the flooring in there. We have a long runner mat in the entrance way that matches the carpet. If you pull this out to the kitchen, she’ll crawl down it and stop at the end, not wanting to crawl the 3 or 4 paces to the lounge carpet. She is very particular about textures, this girl. Hoping one day she’ll crawl over everything, fluffy or smooth!

She is still W-sitting, which some of the therapists aren’t too thrilled about, but she cannot physically manage to long-sit right now (where you sit with your legs stretched out in front of you). Her spasticity pulls her out of this position and her hamstrings are pretty tight, which means it’s uncomfortable for her. She can side sit for a bit though, and has started getting herself into that position every once in a blue moon for a second or two, from crawling position. We will be getting a very small/low wedge to assist with this hopefully.

Ben says she’s started taking a few independent steps (which in this case means, she is starting to lift her foot up on her own, while being supported when standing) during PT sessions, which is very exciting. I hope we can build on that.

I’m still a bit concerned with her right hand and wrist, and her thumbs. We have thumb splints but always forget to put them on, to help get her thumb out from being tightly closed. We are working on a cylindrical grasp.

She is obsessed with slamming the drawers on the two bedside tables we’ve pushed together to serve as an entertainment unit for her TV. She’s obsessed with slamming any drawers within reach, actually. She’s also started to gnaw on these drawers, and managed to take the laminate off the top edge of one of them! We’ve temporarily fixed it with some black electrical tape, but she’s gnawed through that as well. We’re looking for something better (and more gnaw proof) to use, but haven’t found anything affordable yet.

I discovered she likes to play an ‘up-down’ game with me – I put her arm up and say ‘up!’ and then put it down and say, ‘down!’. She then will do this a few times, but likes to make me say up-down-up-down-up-down very quickly and thinks it’s hilarious. So in essence, she’s waving at us, but doesn’t know it yet :) The up and down with her arms is handy for getting dressed and undressed though. It doesn’t take any less time, but at least she thinks it’s a bit more fun and less annoying than she used to.

We also discovered that Vivian LOVES bouncing in a sitting position on a trampoline, so we are now applying for grants and funding to get her a Springfree Trampoline.

Eating: I would like for her to apply these gnawing skills to actual food but she’s still at the eating soft lumps stage. No hard food, thanks. No dry food (ew!) and definitely no touching food with her hands at the moment. She does play with food during ‘food play’ time – where Ben exposes her to crunchy textured foods, and food on her hands in a no-pressure environment. This is the hardest area for me. I am sad that she no longer wants to touch food. Or touch the spoon for that matter. But we have learned that it is going to be a very, very slow road to self feeding and tolerating new foods. And we can’t push her into it because we’ll create an aversion.

My suspicions about Vivian having some sort of sensory processing or regulating disorder or difficulty has been confirmed (although there was never really any question). She likes A LOT of input at times, and sometimes still gets upset very easily when something suddenly changes or stops (sound) or when she doesn’t want to be touched or cuddled.

But, good news – still no more seizures from what we can see, thankfully.

Hearing:  pretty much the same as last post. Not wanting to wear hearing aids. But, we couldn’t get the ABR (base hearing test) done when Vivian had her dental surgery! I really pushed for this, but the dental department just would not budge and give up their surgical time (of which they have a very small allocation for children) to do a test in theater that could take up to 2 hours. We had been told otherwise for a long time, and so this was pretty disappointing. At the end of the day, other things are more important right now. We have a check up this month with her hearing specialist so we’ll see how that goes.

Vision: Vivian is using her vision a lot more than she was when we visited BLENNZ, although it is the first thing she will shut down on if she’s tired or not feeling well. We still work hard to try and optimize her environment in therapies and daily life to make sure she can see the best she can. This’ll come in handy with her new PODD book.

Communication: We had our referral to TalkLink Trust come through and they have worked closely with us to try and figure out what AAC system might be best for Vivian at the moment, one which we can build on in the future. They are recommending a Pragmatic Organisation Dynamic Display (PODD) book, which I had already seen around online. I am so excited for this. I hope that Vivian can tell us more than basic wants and needs down the line with this system. If you’d like to see PODD in action, check out the We Speak PODD Facebook page. An amazing family doing amazing things to make sure their children’s voices are heard loud and clear.

This means Ben and I really need to get our A’s in to G and model, model, model, with Vivian’s new PODD book when it arrives. It can be a lot to learn, but the benefits will be so worth it down the line. The creator of the PODD system will be in NZ this October for some training sessions, so we will be going along to this.

They also will be recommending Vivian get a Classmate tablet, to help Vivian learn switching, so that maybe down the line we can incorporate PODD with switching (if Vivian doesn’t learn how to point or pick selections with a closed or open hand). This will have games on it that encourage Vivian to press a switch to make selections (or possibly even a two-switch system, one for moving the selection frame and one for selecting a frame).

Overall sleep and health:  Knock on wood, Vivian seems to be sleeping a bit better. There are still nights where she is up-down-up-down-up-up-up..until 4am..down until 5am, but now a few where she is only up maybe twice and quickly goes back to sleep. The major discomfort seems to be easing and we can’t figure out what the hell is happening, but we are taking all the sleep we can get! And Vivian is napping again during the day. I’m not sure if that’s part of it or not.

The pediatrician up at Wilson Home Trust had an interesting theory that it could be Vivian’s quads being overworked during the day and spasming or being triggered into dystonia at night, which would be very painful and could explain all the kicking. Or, it could be restless leg syndrome. Either way, she has recommended trying a very low dose of Baclofen or Gabapentin at night to see if one of these is helpful. It’s good feeling to know we have a plan if it continues, and to feel like we were actually heard and acknowledged from the get go with this pediatrician in terms of Vivian’s sleep.

And, we have a new bed for Vivian that is finally safe for her! No more falling out of the bed.

I think that’s everything! There is probably a lot I’ve missed or haven’t thought to include.

I have some questions for you readers, though. I have been considering moving this all to Vivian’s Facebook page. If you could please comment and answer these, it’d be very helpful.

Do you use Facebook?

Would you still read updates if I posted them solely on Facebook?

I know the style of this blog is pretty outdated, but I don’t have the time or motivation to move to a new theme right now. Something needs to change, though! Facebook would be a lot easier and central.

Anyhow, thank you for reading and hope you’re having a lovely weekend, wherever you are! Much love from the Hooper family.

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

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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!

Happy 2nd Birthday, Vivian!

It’s official. We’re into terrible-twos territory. Vivian turned 2-years-old just over a week ago. We all had a cold that week, so we postponed cake until yesterday.

2nd Birthday Smile

The cake itself was enjoyed by all. We ordered a cake from Cakes by Anna, who makes amazing cakes here in Christchurch. The got a lovely small lemon, lime and raspberry one full of tangy, tart flavors that Vivian likes in the hopes that she’d actually want to eat some. It usually has gin in the icing but that was swapped out for raspberries and it usually comes with heaps of toasted coconut on top, but that texture would’ve been vetoed by the birthday girl. It was delicious.

Vivian actually took a few swipes at the icing this time and then promptly dropped raspberries all over the place.

Touching The Cake

She especially enjoyed being sung to, as long as it was in an octave higher than anyone would normally use ;)

#happy belated birthday to our beautiful munchkin @elemunknz #hopeforvivian

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It was pretty adorable and fun for the few minutes it lasted. She quickly exclaimed that she’d had enough of this cake thing and wanted back down to roll around on the floor.

Tasting Icing

Her actual birthday was hard to swallow for me; I actually forgot it was her birthday until I got to work, and then I felt guilty for not remembering until then. Mom of the year! Then I wished I had better memories of the day itself…and for the first few minutes I was home that evening, it was hard to think about while looking at her. Hard to wonder if we could have changed anything on the night she was born, so that the difficulties she has faced didn’t have to happen. The what ifs, the should haves, they shouldn’t matter anymore.

They’ve still crept in, unwanted, usually as I’m trying to drift off to sleep. They have still been my faithful companions for 2 years, during quiet moments in the car. While Vivian has cried and kicked through the night, after all our singing and bouncing and rocking has failed her. When I’ve seen how tired Ben is and when I’ve seen the worry flicker across his face. When I’ve looked at other kids her age and wondered if she would do the things they do, if she could. If her injury hadn’t happened.

And then I looked at her again, and she smiled as I said hello and she said hello in her Vivian way. And the what ifs all melted away. She giggled and it was OK again.

Birthday Cake

I asked Ben how he was feeling after Vivian finished giggling, and he just said he was tired. He didn’t realize I meant how he was feeling in the big scheme of things. It creeps up on him in different ways than it does me. The other day he told me he noticed Vivian seemed to get really frustrated that she couldn’t move in the direction she wanted to go in and she looked around and started to cry. It made him sad to think that she could be getting more and more frustrated each day when she wants to do things but her body doesn’t listen fast enough. It made me sad to know he was sad.

But we continue to push on. And she is amazing, regardless of how we thought things would happen when she was born. We don’t allow ourselves to stay in sad what if land for very long because it doesn’t help anything. And honestly, nobody’s got time for that!

2nd birthday #hopeforvivian

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Vivian’s been living up to the terrible-two stereotype. It’s mostly sleeping issues still. Some nights it’s normal toddler waking, but most of the time it’s discomfort. Kicking and crying, arching and bucking. It’s not fun for anyone, especially Vivian. There could be some teething mixed in — two-year molars? — but we can’t know for sure.

We do know her motility seems normal at the moment, and she’s not refluxy, so we’re stumped. We hope it passes soon.

She threw a tantrum last night when I was trying to put her shoes on, so I could get her into the standing frame. She wanted to be on her stomach and I kept rolling her over to her back. You would think the world had ended! I didn’t blame her. Who wants to be torn away from the amazing sliding panel on the entertainment unit? How could being stuck in a standing frame ever compare to the wonderful ‘THWACK!’ the panel makes when you roll it hard enough to hit the other side and bounce back to the middle?

She’s definitely developing her ability to say no, in her own Vivian ways. And also to say yes. It’s amazing to see how much she truly gets, that I didn’t realize she was getting.

I don’t even know where to start on updates.

Sleeping:

More of the above. Ben and I still attempting to do the shift sleeping to cover wake ups, although I am now working full-time so it’s harder to make sure we’re all getting good sleep. I feel incredibly guilty that Ben wants me to get the most sleep, because he thinks he can catch up on sleep when she naps; some days she doesn’t want to nap so he gets shafted. I think we manage to go to sleep at the same time maybe once a week, if that.

Vivian is understandably fussy on days where she has had shit sleep overnight. It doesn’t help her therapy or learning if she’s exhausted.

Currently waiting to meet with ACC to discuss sleep study options. May end up finally going to Auckland to the Wilson Centre in the Spring.

Physical therapy: She’s making amazing progress with standing for longer and longer periods. We removed her knee guards from her standing frame probably 8-10 weeks ago? and it was very hard work for her to stand without them supporting her knees. You would have to keep a super close eye to make sure she wasn’t faltering and slouching in her frame. Now she will happily stand for 30-40 minutes and watch a Baby Einstein show, alternating her weight back and forth from left to right legs and playing with throwing her weight backwards and forward in the frame. I am sure she’s not supposed to do that, but I don’t see how we can really stop her. Some days this is easier than others, but I guess that’s life.

Leaning

After she spends that time in her standing frame, she’s starting to do some freestanding with just your hands on her hips for support. Then she gets tired of this after a few minutes and wants to lean on the entertainment unit. I’m well aware no child should watch TV that close. It’s only for a minute or two each day,  so hold your horses.

I wish we had a therapeutic bench for her that was a better height, as the unit is actually too short for her and she has to lean down/bend at the waist more than I’d like her to. It’s still amazing she even wants to do that after standing for so long. She is getting so much stronger now.

We’re still working on sitting independently for longer periods of time. It’s all about balance and really, Vivian’s want to do it. She will often lean back to rest on you simply because she can. She’s stubborn, what can I say?

Almost starting to sit up by herself #hopeforvivian #hie

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She’ll now prop up on her hands and knees for longer and longer periods, which only really began over the past 2-3 weeks. Before, we would get lots of angry yelling while she worked on this, because it was such hard work, and now that only really happens when she’s tired and over it. She is really sitting up quite tall, and Ben and I both saw her push up from hands and knees to just her knees for a few seconds the other day. Her PT is sure she’ll end up pushing herself over backwards from this position before she ever goes forward, but that’s how she’ll learn.

Occupational therapy (OT) Vivian’s working on accepting new textures and toys. We’re introducing new toys slowly by placing them next to her favorite toys. Not forcing her to look directly at them, but just introducing them on the peripheral in the hopes that Vivian will show interest in them. She usually just tosses them to the side to get to her favorite toy, Sammy the snail. Oddly enough, some toys she used to like have now started freaking her out, especially if they make noise. We’re not sure why exactly; perhaps she dropped one on her face while it was making noise and it frightened her?

Speech-language therapy (SLT), we are still working on Vivian using switches to make choices. Last week the SLT suggested we also use sign language when we say yes, no, more, and finished. Personally I think the hand movement between yes and no is too similar and I think it might be too small of a difference for her to pick up, because it’s hard to get her to look at your hands.

I also don’t know that she has the fine motor skills to control her hands in that manner to replicate the movement, but I guess it’s more about receptive than communicative language. I am a firm believer that she understands what we’re saying verbally anyway, due to the words she is starting to show recognition for – bottle, tickle (she’s started tickling her right arm with her left hand if you say tickle, to show she wants her arms gently stroked), brushing, finished, show on (God forbid the show ends. The world ends if the show ends!), etc.

Also still working on the book reading with switches, although it’s further down on the priority list (there’s only so much you can do in one day when you have so many things to work on!). Some days she likes it, others she hates it. Flip a coin!

Equipment updates:

Vivian probably only has an inch left in her current standing frame. I think we’re due to look at new ones very soon.

We’re currently trialing an adaptive stroller system called a Bingo Evolution. It’s pretty flash. It should last Vivian for at least 3-4 years and hopefully take all the wear and tear that goes along with it. I think it will be the one we end up going with, but there is still one more we are looking to trial at the end of the month that seems comparable.

The only thing that I’m concerned about is getting her a winter bag/foot muff thing to go over her legs when she’s in the chair, as unlike a regular pram/stroller, Vivian’s legs aren’t backed by any solid fabric in this chair. The bag part that goes with the chair is $500 to buy separately and the ACC equipment specialist said that it’s our responsibility to keep Vivian warm and dry, so ACC would not fund it.

I find this a bit ridiculous, because if Vivian did not have an ACC claim, we would not need a special chair to get her out and about, she would be in a normal pram, that would come with a normal winter bag to keep her warm and dry…so they should fund it. We’ll see what happens. I haven’t talked to our case manager about this yet. It feels petty to dig my heels in over this in the big scheme of things, but that’s $500 we could spend on clothes, food, and diapers for Vivian.

I’m also concerned about the orthopedic inserts we got for her Piedro boots. They look like they’re a bit too high in the arch area, and that they’re causing Vivian’s feet to point slightly outwards inside the boots, even if the boots are straight on. Ben said both PTs saw them and said they were fine, but it seems to me like the boots were ordered too large, with the hope that they would last Vivian longer (and therefore be cheaper for ACC), but maybe it’s me over thinking things. I might get her back into Orthoptics just to have a look at the positioning of her ankles, because the ortho lady who looked at her hips a few months ago did say to watch her ankles and if at any point it looked like she was putting weight down through her inner ankles to the inner arch of her foot, she would need to get ankle-foot orthotic braces (AFOs).

We got Vivian’s Upsee from Firefly by Leckey. It’s pretty awesome.

New #upsee fitted today! #hopeforvivian

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We’ve only used it couple of times, but should increase that on the evenings and weekends soon. It’s a two person job to get Vivian and Ben suited up, so Ben can’t really get her in it when I’m not home. Vivian has started to do some early walking with Ben while freestanding, where he moves her legs forward with his feet by shuffling very slowly, but so far isn’t moving her legs forward by herself. I hope that she shows the want to move on her own soon, in order to get to things she wants. She hasn’t really shown that real want to get from point A to B on her own as much as her PT would like, so she hasn’t looked into ordering her a gait trainer yet (walking aid that sort of looks like a backwards walker).

Eating and drinking: Vivian is really getting the hang of guiding the spoon to her mouth. Still not keen to pull the spoon out with her hand though, so she drops the spoon, lets it hang, or pushes it out with her tongue. Or, if you’re not fast enough, she quickly drops the spoon and moves her head away to get it out of her mouth while you’re holding the spoon.

Her SLT suggested we let her bring the spoon to her mouth and while we gently keep a hold of the end, quickly use one finger to keep the spoon in her hand (easier to show than explain through text), but Vivian is far too clever and quick for that mess, which is why she’s gotten faster and faster at taking her hand off the spoon once it hits her mouth. She has started to also want to put it into the side of her mouth, rather than the center, and wants to chew on the spoon, so I think we’re due for some molars soon.

Learning how to use a spoon #hie #hopeforvivian

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Vivian still doesn’t want to touch the food with her hands much. She refuses to try things if you are holding them with your fingers rather than a spoon, unless you make a huge song and dance out of booping her tongue until she tastes it. She’ll push your hand away over and over and get upset until you stop, unless you can get her to see it tastes good. This means any sort of dry solids are a no go, unless you work very, very, very hard and you are very, very, very patient, and you have an hour to spend on feeding for one meal. It is frustrating, for both parties.

She will accept almost anything on a spoon though. Even if it’s something she just refused that you were holding to her mouth. Spoon = safe. Hands = medicine? She wasn’t always this adamant about it. I am wondering if it’s a vision issue, because she is no longer wearing glasses. It doesn’t mean she can actually see perfectly, and she was far-sighted, so things up close may be blurry?

Drinking:  she is now on formula, as we didn’t want to source donor milk any longer. We figured there were younger babies who needed it and Vivian started to accept formula. So now she still gets as many bottles as she’d like of half-strength formula. Hoping to swap her to water soon, but that will be slow going.

She started showing a lot more awareness of where her tongue was and started making little sucking noises so we have begun feeding her some fruit puree from a pouch with a straw on it to hopefully start transitioning her to sucking on a cup with a straw soon. The SLT has ordered us a drinking set that has a squeezy bottle and straw with a one way valve on it, so you can squeeze the bottle to get liquid up the straw and it stays there until it’s sucked out, so Vivian won’t have to work so hard to get liquid all the way to the top of the straw. Fingers crossed it works.

Learning to suck part 2 #hie #hopeforvivian

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No more tantrums after meals when we put our hands up to say finished. But much ignoring until there’s no way to ignore than the food is gone. We quickly move on to brushing teeth and she is getting better and better with that, even starting to hold the brush if it has an Eazy-hold strap on it.

#finished but she doesn't want to be done so she's ignoring me #hopeforvivian

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Eyes: We were back at the ophthalmologist’s office last week. He thinks Vivian’s sight is OK, and that glasses aren’t going to make a huge difference (because she wasn’t tolerating them). He does not want to do surgery to correct her inward-turning eye because he thinks it may not cause that much of a difference to her development, saying that her vision is not a high priority to the rest of her development. I have heard the opposite from parents of other kids with HIE, where their child’s development has really taken off after having the surgery.

Then, in the same breath he says that the younger the patient is when they have the surgery, the better the chance of them gaining good control over their binocular vision. Most doctors perform that surgery when the child is between 1-2 years of age. I feel like that’s a cop-out, and I think that we should have it if it can help her in any way, especially if it will make it easier for her to see. er brain would no longer have to swap between eyes, which is very tiring.

It’s almost like saying because she has global developmental delays, we should concentrate on other areas than her vision because they’re more important, because she obviously has some level of vision already. If your child has had a strabismus surgery, can you please share your thoughts in the comments or email me? 

Ears/hearing: Vivian seems to be hearing fairly well when she doesn’t have her hearing aids in. So much so that the audiologist believes her hearing has improved somewhat. Unfortunately the test to determine this can’t be done while Vivian is awake so we won’t know unless she has to be put under for whatever reason in the future, but it’s something we’ll look at if Vivian ever needs surgery.

In the meantime, Vivian still wears her hearing aids for a good portion of the day, working up to full-time.

Hips & tone: Vivian is now overdue for her second round of hip x-rays…surprise surprise! And also overdue for a follow-up pediatrician/specialist appointment.

The ortho lady who arranged her first x-rays should arrange another set soon. She checked Vivian out this past week while at the Champion Centre and says she thinks her hips are fine. Increased overall tone on her right side (meaning her right side is held tighter than her left) but nothing new to worry about. If Vivian’s tone on her right side gets worse, we may have to look at botox injections when she gets older. I am hoping more standing time will help stretch out that right hamstring.

Teeth: Vivian is now seeing the hospital pediatric dentist, instead of a private dentist. He wants her back in a few weeks to monitor her molars for any signs of decay. He mentioned that kids with HIE injuries are prone to having moderate to severe enamel defects on their molars, so he wants to keep a close eye on her second set when they come in because it makes them prone to decaying. He wants us to brush after breakfast and dinner, and apply dental mousse at night while she’s asleep.

He also told us to wean her off of her bottle at night. On top us already not getting great stretches of sleep, now we meant to cut off her bottle…one of the only things that can get her back to sleep when she wakes up. I understand that milk sitting on teeth is not good, but some kids just get the shit hand when it comes to genetics and circumstances. If Vivian is one of those kids, I don’t think a bottle at night it going to change that much. If I was breastfeeding he’d have said the same thing. There are only so many battles we can fight and still be sane during the day.

I think that’s everything I can think of at the moment! Thank you for reading along and supporting us over the past 2 years. I looked back at my Facebook posts (they’ve been popping up in the “On this Day” section) and there are so many comments I didn’t get to reply to, and messages of support from so many of you. We couldn’t have made it this far without the village that is you.

Much love and drooly kisses from Vivian to you. And a cheeky grin. :)

2nd Birthday Smile 2

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 ;)

No News is Good News

We’ve had a pretty low-key week here, since my last post.

Nothing major, or exciting to report, really! It is good to be able to say that. Still no spasms. A few big startles, though. Have talked with some other parents of kids with HIE and some of them have reported back that their kids have very sensitive startle reflexes still. Sounds like the neuro is hopefully right.

Ben’s been sick. So far Vivian and I haven’t caught it and I hope we won’t. Hoping he feels better this week! I know he is missing Vivi cuddles something fierce.

I flew solo on Monday taking Vivian to her therapy session at the Champion Centre. Vivian was fussy because she woke up early and then napped and then had already woken up again before we had to be there. The PT was still very happy with her progress in sitting and rolling.

Vivian did manage to roll from back to front during the week while Ben wasn’t looking. She pinned her arm under her though, which is what we’ve been working on with her, and she wasn’t too happy about it! She hasn’t done it since though.

Her Squiggle Early Activity System arrived too (took two months, though!), so we’ve been using that every day so far. It’s really helping with her sitting and working her core. She wants to sit up ALL THE TIME. I don’t understand how her little abs don’t hurt. She’s also started bouncing on her knees if you hold her in your lap, and slightly head banging if you hold her on your shoulder. She really likes bouncing in general.

Vivian is still tolerating her glasses very well. I worry when we don’t have them on. The optometrist said she should wear them during every waking moment, but that’s not really feasible with a baby who has some sensory issues around her face. Still working on getting her completely comfortable in them while she’s laying on her back. I don’t know if we’ll ever get there!

And we need new batteries for her hearing aids. I must remember to call the hearing specialists and get some more. Doh!

We went for an hour-long walk yesterday, after having an awesome day with only two naps. Vivian was up for 5 hours after that! Didn’t get her down till almost 11pm. Then she woke up with a super sad this morning. We think it’s teething but really have no idea.

And I’ve also busted out all the clothes I bought for her at Christmas. She’s actually wearing clothes appropriate to her age, which is weird! When she was born, she went straight into 3 month clothing. Then she got away with wearing that through to about 7 months (stretchy stuff for the win!) and now the 9 month stuff is just a bit loose. She is growing like a weed now.

Those teeth I mentioned last week have been no shows! They lied. Little lying teeth. *shakes fist*

Hope your weeks are going OK (or weekends). Please leave us a comment and let us know what’s going on in your world.

Obligatory photo from our walk yesterday:

Happy Walk

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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