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.

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7 Comments (+add yours?)

  1. April
    May 28, 2017 @ 05:08:01

    I would read on Facebook. Love all the pictures!!

    Reply

  2. Kiri
    May 28, 2017 @ 06:24:50

    What a fantastic update! I didn’t realise she was crawling as well. What a clever wee cookie
    I’d totally follow you on Facebook!

    Reply

  3. Sarah Jordan
    May 28, 2017 @ 07:48:46

    Great read and so good to hear how well Vivian is doing. Yip I use Facebook and and would def read updates!

    Reply

  4. Siobhan
    May 28, 2017 @ 12:23:06

    Would totally read on fb

    Reply

  5. Maria
    May 28, 2017 @ 13:57:26

    Just found your blog through Kiwi Mummy Blogs. I read through the whole post, and then the one you linked – her previous update. It was interesting, because I, too, have a child with cerebral palsy. He’s 6 and we didn’t get the diagnosis until he was 4 – until then we knew that something was going on, but weren’t sure what exactly. (Delayed speech, delayed motor milestones, some autism-like behaviour, muscle spasticity etc.) He, too, wears an ankle-foot orthosis, but a fixed one. He’s starting school next week: they’re getting special sofas to help him have a seat during mat-time (otherwise he’d W-sit), a frame and seat for toilet, and I’ve met with the teachers to talk it all through. It’s a big step – both for him AND for me! I read your post with interest because most of it is relevant to me and it’s unusual to find someone who writes with such openess – I write a blog, too, but I put very little about his medical history in there, and mostly just focus on my emotions on how I handle things. I don’t use Facebook, though, so if you moved it there I wouldn’t have access to it, I don’t think, unless it remains an open, public page?

    Reply

  6. Patty Wunder
    May 28, 2017 @ 20:36:50

    WOW….what a journey! :) Very interesting! :) xoxox Big hugs to your three and furry ones too! :)

    Reply

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