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

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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!

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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

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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!

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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

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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

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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

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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!

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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

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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?

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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.

Meeting Santa is obviously exhausting. Sleeping through her first grocery store trip #zzz

A photo posted by Gwen (@gwenami) on

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 ;)

A Continuation of Firsts

Melodramatic post alert.

I was talking about all sorts of firsts happening in my last post, and they’re still coming. Tomorrow we are trialing quite a big one – Vivian’s first bed is arriving in the afternoon. Much faster than I ever really wanted. It’s a junior electric bed.

I guess this is my version of what a mom of a neurotypical child goes through when they say that their baby is growing up too fast. Or maybe it’s that darn grief that I thought I’d dealt with already. I really have worked hard to move past a lot of it, so I wasn’t expecting this to be as hard as it is.

Kicking in her cot

I thought we would have a little more time to tuck her in for naps in her cot. Or to come into her room and see that she’s playing and singing in her cot. Enjoying her little patterned cot sheets and tucking things away under it, out of sight for now. Hearing her feet kick against the sides as we get her lunch or dinner ready, or hearing her squeal in delight from behind the slatted head-board, because hiccups are just the funniest things, ever.

I thought we’d have a bit more time to see if Vivian figured out she could bear weight through her arms and learn to sit up in it. To see if she would learn to pull herself up on the sides of it. To see if she would get to stand and gnaw on the rails of it and leave her story engraved there, for other babies to find and overwrite.

I thought we had at least another year of Vivian in her cot. I guess not.

The reality we’re facing is that Vivian is getting too long for our changing table. She actually is already. And since we rent our house, a home modification isn’t really an option. So to save our backs as Vivian gets longer and more awkward to lift on and off our bed or the floor, and more awkward to get dressed on our bed and in her cot, we are trialing this bed.

Too Long for This 2

I am not sold on this bed, but a trial is a trial. Somewhere in the back of my mind I’m worried that the sides won’t stop her from falling out. I know I shouldn’t bother worrying about that right now, since it’s not a realistic risk. It’s one of those things that I wish I needed to worry about already.

If Vivian’s room was bigger, we could trial a different bed, like a giant wooden cot, with very high sides. That model is too long to get in the room and still close the door (or even get through the door).

Upside Down Smile

I know I should be thankful that I can see Vivian kick about in this new bed, and play, smile, and grow in this new bed, and I really, really am. But I know I also need to allow myself this brief moment to acknowledge the hurt and this new kind of different that will become our new normal (and how we are going to have a life time of these, if we are lucky).

I know this really is for the best. And I do want the best for Vivian and for us. It’s just so surprisingly painful. Damn it. I’m so over this surprisingly painful crap.

On the bright side – it’s purple! I hope the pictures are true to life. And now I need to find some new sheets for the Vivster, who is doing very well, all firsts considered. She is taking them all in stride. Better than we are. I’ll write more about those updates tomorrow. Tonight, I need sleep while I can get it.

Lots of Firsts

So much has been going on! We haven’t had much down time since my last post. Lots of appointments and therapy for Vivian. And a lot of firsts within the past week. Of course, they aren’t the firsts we had ever imagined for Vivian, but they are pretty cool firsts nonetheless!

Eating, sleeping and general well-being: Vivian has finally started to come right after about three weeks of bad reflux following that stomach thing. This week is the first week she’s seemed a lot better and back to ‘normal’. She is still experiencing more reflux than she was right before the stomach bug, but they are slowly spacing out a bit more and just this weekend she really hasn’t had much reflux (phew)!

We’ve been a bit concerned about her fluid intake, but just this weekend again she has taken a lot more than she has this past week. We also got her first nosey cup from the speech language therapist and Vivian has been enjoying learning how to drink water out of it. It only holds 30ml (1 oz) of liquid, and it can take a good ten minutes to get that all in her mouth, little by little, but she shows genuine interest in it which is so awesome to see.

She got weighed week before last, and she’s back at 8kg, where she was before she got sick. She gets weighed again in 3 weeks I think! She is back to eating good meals of smooth solids again and has even chomped on her first apple sticks this weekend, which is a huge step for her in a sensory capability. Previously she would reject anything cold or wet in her hands.

She’s got her first molar coming in (we only just realized yesterday); this will make tooth number 7! I wonder if it’s odd that her teeth aren’t coming in the matching pairs that I’ve seen on all the charts out there? Luckily we found a teething powder that seems to work (mostly) when we think her teeth are the issue at hand. She’s gotten to the point where she’ll open her mouth and let us rub her gums with the powder when she sees the jar.

Special equipment: Vivian’s first piece of seating equipment arrived last week. This new seat is a Zeat Seat and we have it on a trial basis at the moment (funded through ACC). I think we will keep it. She doesn’t have to work as hard to have good posture in it, like she does with our highchair, and this means she can really enjoy eating a lot more and have a straight spine, which allows her to use her arms more to interact with food or toys on the tray in front of her.

Zeat Seat OT

She also got her first pair of orthopedic shoes – Piedro Boots.  They’ll help keep her foot and ankles aligned when she starts to bear weight.They look like the blue ones, but are a dusky pink color with hearts, because girls must have hearts on things? I can’t deny that they’re cute, but wish they came in more colors than blue and pink. Thankfully (for Ben and I) they have velcro fasteners and not laces. I don’t know how we’ll manage her shoes when she gets ones with laces; she hardly ever keeps her feet still! Vivian absolutely loves to stomp away with these on and has taken to them really well.

The new shoes sort of tie in to the new chair as well, because the chair has a step that she rests her feet on. When we take her out of the chair, we are supposed to rock her forward slightly so that she’ll stand and bear weight through her legs, which seems to come naturally! Her physical therapist was very happy to see Vivian do this on her very first time in the chair.

We are expecting her first standing frame sometime soon (hopefully) they’re unfortunately on back order at the moment. I think it’s a Leckey Tot Stander I don’t know how well that will go down with Viv as she hates being restrained so at first she’ll be in it for liike 5 minutes tops a day. I think we need to get her hips xrayed soon to see if her sockets are developing normally.

Therapy & specialist updates: We have a planning meeting tomorrow with all of her therapists (ACC, Champion Centre, Blind & Low Vision Education Network NZ, etc.) to make sure everyone is on the same page for the next six months. This should hopefully mean that we’re all working towards the same goals for her.

The past two weeks have been really great for therapy. Our weekly Champion Centre sessions have been pretty good with no major meltdowns and Vivian’s home therapy sessions have been even better. Vivian is still working on sitting up unassisted, tummy time, side sitting, and bearing weight through her arms and knees. She has found her hips and now instead of kicking when she’s on the floor, she’ll bridge with her hips and lower back in the air for very short periods, which is new (and good).

Vivian has also really started grabbing for her toys a lot more and is really using her right hand more than she ever used to, which is excellent. She still favors her left hand for most new things but when we feed her she’ll often want to touch the spoon with her right hand and guide it towards her mouth.

We have an ophthalmologist appointment on Friday to find out if her glasses have helped her eye alignment at all. I don’t think they really have and we can’t get her to leave them on for any good amount of time now unless she’s eating. I think we may have to go down the surgery road there in order for her to keep sight in both eyes.

Still no seizures! And we have about two and a half weeks left of her wean off of the levetiracetam.

Onwards and upwards! Here’s to no more stomach bugs and less reflux and hopefully more sleep. And eventually sleeping in her cot…we are working towards that still. We keep putting it off due to illness and reflux.

Zeat Seat Happy

Much love and drooly kisses to you!

Hanging in there

We left off from my last post determined to get Vivian on track with some solid weight gains. We got her steadily eating three solids meals a day along with her bottles, and we were all set to get her weighed again this past Tuesday, but unfortunately Vivian had other plans.

Last Saturday afternoon she started throwing up everything she’d eaten for lunch, and proceeded to throw everything she drank up after that.

Vivian ended up pretty dehydrated. It was pretty scary how quickly she went downhill and how lethargic she became. We ended up in hospital on Sunday morning and we tried syringing pedialyte into her mouth every five minutes to hydrate her. She would go for about 45 minutes at a time and then throw everything back up, so they admitted us Sunday afternoon into the children’s ward. One night with a nasogastric tube and she perked back up again enough to take a bottle and managed to keep it down, so we got to go home on Monday afternoon.

 

Thankfully we were only in hospital for a day, but Vivian lost pretty much all the weight she’d gained (and then some) over the past three weeks in those 36-48 hours. We cancelled her weigh in and will probably reschedule next week. We think her tummy is still pretty sensitive though, because she will randomly cry and bring her knees up like she used to when she had really bad gas.

I think we have been very lucky that this is the first time she’s been really sick though. Knocking on wood in hopes that was all of it for this year. The hospital thought it was a bug since it came on so suddenly, but we have no idea where she would’ve picked it up. We don’t know anyone that has had a gastro bug.

Since the hospital stay, Vivian’s sleep has been all over the place and she’s been extra grumpy. It has not been fun times here! Her fifth tooth also sneakily came up at some point (she now has three bottom teeth). She’s only just started napping again over the past couple of days and is back to eating three meals of solids plus bottles.

She tried a pancake for the first time today (we made her a tiny one) and while she did shy away from it at first, she let me put it on her tongue and she did actually eat some of it, once it was soggy enough for her to just swallow the little bits. That is a pretty big thing for her, so we were really happy about it. She definitely didn’t like holding on to it though, so as part of our therapy goals for the next six months, I think we will be getting a sensory profile done for her, which means she’ll be assessed to see what she can handle and what she can’t handle and we’ll be given some direction on how to help her overcome her aversion to certain textures.

Developmentally, Vivian is still trucking along at her own pace. We got her a bigger, heavier Oball and she has really taken to it. She’ll pick it up from wherever it is around her body, even crossing over her mid-line to pick it up from one side or the other with her opposite hand, which is good to see.

New OBall

She’s done a few sneaky rolls onto her back to her tummy, when we haven’t been in the room to see of course! We are still working on getting her to bear more weight on her arms and knees. She will need to have an xray soon to check that her hip sockets are developing OK, as this can be an issue when kids don’t bear weight through their knees and legs when they typically would.

Her glasses aren’t staying on much these days, because she’s discovered it’s very easy to pull them down past her nose! We will be scheduling an appointment with her ophthalmologist again soon to see what he wants to do regarding her strabismus. I’m nervous about that because I think he’ll suggest surgery.

Vivian High Chair

Our ACC therapists organised for Vivian to be measured for a special chair that will support her more than the high chair we have at the moment, as well as a stander to get Vivian upright and bearing some weight through her legs. I had really hoped that she would be sitting upright unassisted by now, but I’ve learned that things will come when they come and I should just concentrate on enjoying the journey where I can, because she is growing so fast.

And Vivian is still seizure-free! We are two months in on her wean off of the levetiracetam. Next week we go down to 1ml a day. Please keep your fingers crossed that she has no spasms or seizures.

Hope that this month brings you much joy and happiness! :)

Weight Woes & Ear Checks

It’s been a month since I last posted updates – oops!

Good news first: Vivian is still seizure free and we are a month into weaning Vivian off of her anticonvulsant medication (a quiet woo hoo!).

Bad news: It’s been this long between posts because we had a setback with Vivian’s weight and it has been hard for me to come to grips with it, and because Vivian’s birthday kept us really busy (will update about that soon, I promise).

The day after my last post, we had Vivian’s next pediatrician appointment at the hospital, where she was weighed for the first time in three months.

We were pretty shocked when the scales read 7.65kg, meaning Vivian had only gained about 320g in three months. It was super disheartening when the pediatrician pointed out that this put her at the first percentile on the hospital growth chart (based on forumla-fed infants). She did grow 8cm over those three months, though, so her growth hasn’t been stunted at all.

Ben and I left that appointment full of gusto about getting Vivian onto three meals of solids a day, and me vowing to research everything I could about getting more calories into these limited (smoothest of smooth) solids.

The pediatrician also put in a referral to get a dietitian working with us. I will admit that it was really hard going home and realizing that yet another thing with Vivian is not going to be easy. Really hard. But she’s still smiling, and laughing, and being as active as ever, so she’s definitely not failing to thrive. On the bad days, she makes us really work for those smiles and laughs, but it’s still worth it.

I was also pretty confused because the New Zealand Well Child books use a different growth chart than New Zealand hospitals use. The well child chart is based on breast-fed infants and is the one used by the World Health Organization. On that chart, Vivian’s weight put her at the tenth percentile, not the first.

Vivian was weighed again last Monday and now weighs 8kg (I think this puts her at the 25th percentile on the WHO chart) after a lot of hard work by Ben and Vivian. Ben has been working on upping the volume of solids at every meal, along with adding things like cream and butter to Vivian’s solids, which she doesn’t seem to mind. We’ve also discovered Vivian takes after me and shares my love of peanut butter. Her only accepted savory flavor to date. We’ve got a long road a head of us on food! Hopefully we will get there one day.

The dietitian finally made contact and saw us last week and didn’t really tell us anything we hadn’t read already while researching a higher calorie diet for Vivian. She did, however, point out that breast milk wasn’t providing Vivian with an adequate amount of iron past the first 6 months. When I mentioned that this information was somewhat outdated, and that the iron in breast milk is more readily absorbed than iron found in other foods, she didn’t look particularly pleased with me and so I spent the rest of the meeting on edge, and was pretty disappointed with the information she provided.

At the moment we are still continuing with donor milk, as we haven’t run out yet. She did mention a supplement we could add to Vivian’s breast milk that will boost the fat and calorie content and dropped off a sample for us, which is a good avenue to look at, but a large amount of powder will need to be added to the bottles and we’re not sure Vivian would readily accept the flavor. Something for us to trial, I guess.

Slight rant: Today we were back at the hospital for an ENT appointment that was completely superfluous and a waste of time. We were there for all of 90 seconds once we were called back from the waiting room. They only wanted to check Vivian’s ears to make sure there was no fluid build up or sign of infection, even though we already see the hearing specialists at least once a month (usually twice a month)!

While I do appreciate that they have Vivian’s best interests at heart and that they’re being vigilant with her hearing health, we could have told them her ears are clear because they were just looked at 10 days ago.

I leave you with what Vivian thought of the waiting room:

What Vivian thinks of having to wait for her appointment

A video posted by Gwen (@gwenami) on

And will try to update with how Vivian is getting on in physiotherapy and her birthday soon!

Two teeth and three weeks later!

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

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

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

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

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

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

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

Vivian Rufflebutt

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

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

Vivian Eating

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

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

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

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

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

Vivian Spinning Toy

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

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

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

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

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

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

Mr. Snail

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

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

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

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

11 Months Old

Ack, two more weeks have gone by. Vivian is now 11 months old! We have been floating through with no major upsets. Still no spasms. Less than a month to go till her birthday, and inside I’m silently freaking out about it. It has been the longest year of my life, and the shortest. I am dreading it because it is bringing up all sorts of memories of her first month in hospital. But I also want to celebrate it.

The Christchurch Women’s Hospital finally sent us their serious incident report of the events that took place when Vivian was born, and recommendations that have been made based on that report. I’ve only read it once and it was not fun to read. I should probably reread it but I don’t have the energy.

They believe  that Vivian would have suffered from some degree of HIE (lack of oxygen) already when she was born, but that their mistakes during her birth contributed to her injury being much more severe than it would have been had they made no mistakes. I am calling bullshit on that, because who wants to accept responsibility for giving an infant severe brain damage, but we will never truly know.

On to Vivian updates:

Vivian still has two top teeth coming in, and they’re taking their sweet time making a début. I can’t figure out if they’re her incisors or not, but they’re not the front two teeth. Yay for still no sleep! But we’re all handling it pretty well considering.

Vivian First Sugar Taste

Still experimenting with solids. Savory stuff is not passing go and not collecting $200. It’s heading straight to jail, via dripping off Vivan’s tongue or being scraped off because she would rather eat sweets, like yogurt, or butterceam icing (we’re doing a photo project and wouldn’t normally feed her that, I promise). We didn’t think this introducing new flavors thing through very well, did we? Take it from us, hold back on the sweet stuff!

Vivian is eating out of the hammock now, and having all her day sleeps in the cot. Awesome progress there. Just need to build up our resolve to get her night sleeps going in the cot. I have no idea how to do this. We do not believe in the cry-it-out (CIO) methods, so I think it will take some time.

Blind & Low vision Education Network NZ came out to meet us last week. They will be returning a few more times to fully assess Vivian’s sight to see if she’ll fall under the criteria to be accepted into their program/membership/not sure what they call it.

The two ladies who came out were really lovely and saddened as much as we were about nobody mentioning their organization to us from the hospital or eye department. Apparently they have approached the hospital several times and tried to educate them on what their criteria are and have asked them to send cases their way if patients meet the criteria, so they can be assessed early. Big thank you to Stacey (Thomas’s mum from Minding Thomas) for sharing information about CVI and BLENNZ. Without her blog I never would have researched it myself.

Aviator Vivian

We have an audiology appointment this week, to get new molds fitted for Vivian’s hearing aids, and to continue familiarizing Vivian with the audio-visually determined reaction evaluation test I mentioned a few posts ago (where they play a noise and if she turns to find the sound, she sees a puppet move).

We had a visit from Vivian’s ACC-provided speech language therapist. She is stoked with Vivian’s progress on not eating in the hammock. We have her propped up on pillows on the floor to eat at the moment, and she suggested continuing to add pillow height until Vivian is sitting up more. Sometimes I sneakily feed her while she’s leaning on my legs, sitting up. She won’t let me do it every time, but some is better than none.

We’re to also continue with “turn taking” behavior – where we do things Vivian likes and then stop to see if she’ll tell us to continue, and then we’re supposed to state what we are doing, and what Vivian is doing, so she gets used to hearing the words more. And to also encourage her to differentiate her vowel sounds when she’s babbling. We haven’t really heard her do that at all. I’m not sure if that will come. I hope it does.

And we’re also supposed to read her books, which is something we haven’t really done before, because we are so busy trying to do Vivian’s physical therapy every day and getting her feeding and sleeping sorted. The SLT was very adamant that books are meant to be fun. And they will show Vivian things that she wouldn’t otherwise see in our house (but we’re not sure what she can really see at the moment, so it was hard not to point that out).

So I will be hitting up thrift stores and kids buy-sell Facebook groups for some more books. Pretty books and old books, books that can be slobbered on and books to keep. Because anything is worth a try, if it helps even a bit with her communication, or if it brings a smile to her face. Whether it’s because she likes to hear us read her stories or if she just likes touching the books and playing with the textures of the pages, I’ll do my best to give her that opportunity.

Mom Cuddles

Hugs from us to you. <3

When the Days are a Blur

This happened:

200 Days Seizure-FreeWoo hoo!

The rest of the days are a bit of a blur, as Vivian has been up most nights with stomach pain, from what we can tell. I think it’s related to starting solids. And when she wasn’t up with stomach pain, she’s wanted to have a party at 3am for an hour or so.

I made up a batch of pears purée, not realizing exactly how fibrous pears were for little baby tummies. Although she enjoyed it a lot(but the texture freaked her out a bit),  we had a bit of a double whammy with carrot and pear in one sitting, which caused her to have a sore bum. I think it’s going to take a bit of time for her to adjust to eating solids, but since she’s our first kiddo, we don’t really know what’s normal and what isn’t.

Ben and I are both so excited by Vivian’s interest in solids, though. We just can’t get over it. I had a teary-eyed moment at work when Ben sent me this image of all the food she ate in one sitting, without getting much on her bib. It was a very special moment that I don’t think I’ll forget any time soon. I am so mushy even looking at it again now.

Solids

Vivian’s milk intake has still been on the low side, and she had a temperature for a day or two this week. I think if she was coming down with something she would’ve displayed more symptoms by now, but she’s just been super fussy overall during the day, too. I don’t know if this is the start of teething? Something else? Whatever it is, it’s not been fun!

Vivian has been extremely fussy during her physical therapy sessions as well, which isn’t like her. I’m not sure if it’s tiredness due to crappy timing or again, if she’s just not feeling well.

We have ordered a custom wrist brace for her right wrist, because she tends to hold at an unnatural angle. Hopefully it helps. If she does it because of high muscle tone, it might actually be bad to use, because then her muscles will strengthen by pushing against the brace. It’s all very up in the air. We do try to correct her wrist position, but it’s hard to do it all the time. You can see it in the image below; it usually happens when she’s sitting and wanting to interact with toys.

Eating Mr. Snail

Update on the missing ophthalmologist notes: the eye doctor gave us a last-minute appointment last Tuesday to clear things up. He thinks he must have seen another two babies with some severe eyesight issues, and may have superimposed one of their cases onto his recollection of Vivian’s case when he wrote that latest letter to me. Her original prescription is correct, and yes, she should wear her glasses as much as possible. They are definitely making a difference in her strabismus and her vision. Glad that’s been cleared up!

He still thinks it’s too early to test for corticol vision impariment, and said that the test would do one of two things. Either give us a really good reading and show that Vivian’s eyesight is working normally (as in sending signals in a timely manner to her brain), or give us a crappy reading, which could just mean that Vivian isn’t paying attention during the test, or that Vivian’s vision isn’t working properly. He said the second instance wouldn’t give us great information to go on.

I am still wanting to know what BLENNZ will say though, so we’re proceeding with the assessment in early May with them.

Until next time, big hugs from us to you!

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