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

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!

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