3-Month Catch Up!

After my last post I sort of buried my head in the sand for a bit and let three months fly by with no updates. Oops.

Work has been very busy and I’ve become a Jamberry Nails independent consultant, which has been great fun so far and has given me some me time back. It’s been awesome having kick ass nails at a discounted price, too! Makes me feel more human on the bad days. I’ve also been going back to the gym, on days where Vivian’s gotten good sleep the night before, which hasn’t been a lot lately, but the past couple of weeks have been better.

It’s hard to remember what has happened three months ago, so this will be a bit jumbled.

Firstly, Vivian hit a year seizure free! Exciting!

Vivian One Year Seizure Free

 

Sleep (and other stuff) update: In early October we got her MMR vaccine, so she’s now caught up on all of those. That went as badly as you could expect – spotty rash about a week later. A few days after that a fever and just very grumbly overall. She had some good sleeps after that where she slept through from about 6pm to 6am and she was like a different baby the next day. So relaxed and chilled out compared to usual, and so much more focused during therapy. If only every night was like that!

Her first four molars came in around this time, so sleep again went out the window. Currently, only her bottom two molars are all the way through. The top two are taking their sweet time! Ben also was having teeth trouble of his own and was at the dentist every week for about 4-6 weeks straight. Fun times all around!

In late October, early November, Vivian started getting really constipated and having trouble with hard, formed stools that she really had to work to get out. Around this time she started sleeping even worse. Late night parties, crying, kicking, back arching. It was not fun at all. I thought it could’ve even been restless leg syndrome or spasms waking her as she genuinely was upset and not just wanting comfort and she would doze off and then jerk awake by bringing her legs up to her stomach. She was definitely in pain a lot of the time and it was really hard on all of us.

It was so obvious she was exhausted and wanted to go back to sleep but none of our normal tricks were working (singing, rocking, bouncing). It really took its toll on Ben and I, but mostly Ben and Vivian, as he tried to let me sleep because of work, bless him.

We had a check up with our hospital pediatrician in November, but saw one of the doctor’s registrars instead of our actual pediatrician, because she herself was sick. The registrar suggested we up Vivian’s Lactulose dose from 12ml a day to 20ml to help pass the stool. We were concerned about this as Vivian already struggles to get enough fluids in. We are still working on teaching her to drink water from a cup and she refuses water from a bottle. Lactulose should be taken with a full glass of water because it sucks the water from your system into your bowels to soften your stool.

Well, after this, her sleep got even worse. She would bring her knees up to her stomach and just thrash around and cry :( At this point we didn’t realize it was probably the Lactulose causing her to have stomach cramps and really bad gas. Someone suggested we ask our therapy team if they had any continence nurses who worked with them. Normally continence nurses don’t see children as young as Vivian, but when the nurse heard that Vivian was on such a high dose of Lactulose, she was quick to say that amount would cause even an adult to have some really painful side effects and suggested we try a different medication, Movicol.

So we did, and the result was pretty much immediate. Over the past two weeks we’ve had a good handful of sleep-throughs after some early waking for a bottle, which we haven’t had for almost three months. It’s been great! And Vivian’s had softer, more manageable stools. Winning all around.

Equipment update: Vivian got her new bed in the end of September; it’s fantastic. We transitioned her from the hammock over to the new bed pretty much straight away and she took to it really easily within the first night of trying. I got over my mopey feelings about it once I saw how happy she was in it.

We also got a GoTo Seat for Vivian, but haven’t really had a chance to get out of the house and use it anywhere! As soon as we got approved to get this seat, the makers released the new and improved version (that isn’t available in NZ yet, boo!), so Vivian has the older version. It’s basically a portable, high-backed seat with a five-point harness and sides that come in slightly to keep Vivian from slouching to either side.

And we are still working with Vivian to spend time in her standing frame each day. We ended up keeping the second one we tried, which is on wheels and has a removable tray that can be angled towards Vivian. It’s a better model than the first one we had (not on wheels, no tray/work space attached).

Vivian Standing Frame

And Vivian has some new kicks for the summer, a sandal version of the Piedro boots she was wearing over the winter. These are only on loan until we get the pair on order for her in the next size up; fingers crossed she doesn’t wear them down too much in the next few weeks!

Hips update: Back in October (or was it September?) Vivian was examined by the “hip lady’ – a physio who specializes in orthopaedic health (I think?), to see if her hips were developing correctly. She wrote a letter about her exam…which explained how Vivian’s hips flex and at what angles and a lot of stuff I don’t fully understand. She didn’t seem too concerned with Vivian’s range of motion, but because Vivian isn’t walking or crawling, referred her for hip x-rays.

Apparently a letter was sent out to us with a date for said x-rays but it never arrived (surprise, surprise) and thankfully the hip lady followed up on Vivian missing the x-rays with our therapy team at the Champion Centre. If you miss an appointment here, nobody calls you. You’re labelled as a ‘no show’ and it’s up to you to get referred again and rescheduled for a future appointment! Pretty awesome, considering we had no communication reach us about the appointment, right?

We mentioned this to the registrar at Vivian’s pediatrician appointment and she was able to pull some strings and get us in for x-rays that afternoon while we were at the hospital. They came back fine, from what we’ve heard (no news is good news?), so it sounds like Vivian’s hips aren’t shallow or at risk for dislocation right now. Given how many times we’ve fallen through the cracks in the system, I’ll be requesting copies of the notes to see anyway, for my peace of mind.

Weight and height: I think I mentioned previously that we were still working hard at getting Vivian to gain some good weight – we’re still working on this, but the dietitian is happy with our progress.

Longlegged Vivian

I can’t remember how much she weighed at the doctor appointment, but I think it was just under 9kg (so she’s finally doubled her birth weight!), and she is 80cm tall. Half my freaking height, and not even 2 years old. Ridiculous. Thanks, Ben’s genes! So she’s in 18-month sized clothes right now, which are loose on her but tall enough for her. A string bean, she is.

Eyes update: At our last ophthalmologist appointment, the doctor downgraded her lenses to a weaker prescription. We got transitional lenses because Vivian’s eyes are still pretty sensitive to sunlight. I really hate them because they’re dark even indoors and we usually put her in sunglasses outside anyway. He also said she most likely wouldn’t need surgery to correct her strabismus but it’s not always very apparent, and I’m wondering if it wasn’t really on the day he saw her. When she’s tired, very excited, or focusing on something very close to her face, there is still a strong inwards turn to one or both of her eyes. Another thing for me to follow-up.

Vivian Reading BLENNZ Book 2

BLENNZ sent some really awesome, handmade books made especially for Vivian from the Jellybean Club (I’m guessing it’s a group of lovely individuals who volunteered their time to make the books for kids with vision impairments).

They have lots of textures and just one main image/item on each page, which makes it easier for Vivian to see in comparison to regular books. She adores them and will spend up to an hour exploring them with her hands, but mainly her tongue.

Vivian Reading BLENNZ Book

Eating update: Vivian is still going strong on eating soft solids and we’ve mastered the art of eating soft lumps in her food as well, as long as the food itself is pretty wet. She still doesn’t like to really touch her food or bring it to her mouth on her own, but is pretty accepting of almost anything on a spoon.

Vivian Eating Al Fresco

On Christmas she tried her first taste of turkey, and scalloped potatoes (with ketchup, of course). She definitely loves ketchup! Turkey she could take or leave. With foods like that, we have to actually give her a very tiny piece and shove it past her tongue, into the side of her mouth, or she’ll just spit it out when she thrusts her tongue.

She’s started liking oatmeal for breakfast, with finely chopped dried cranberries (it’s what I could find in the pantry). No cinnamon though! It’s the only thing we can peg down that she dislikes in store-bought baby food.

Therapy updates: Vivian is rolling both ways like a champ now. Shortly after my last post she really started going for it! Sometimes she still gets her arms stuck behind her when rolling from front to back and I fear she’ll dislocate her shoulder because she just keeps trying to roll over on them. I think we need to work on this while I’m home this week. Here’s a video from the week after she decided she wanted to roll both ways:

We’re still working on sitting up unassisted, but Vivian is making some good strides there. Last week, she sat unassisted for about 15 seconds, which is her current record. We’re also working on getting her to open her right hand and bear weight on her right arm while sitting, and working on developing her protective reflexes that would mean she could stop herself from falling over while sitting. It’s been slow going in this department but she is bearing weight more and more on her left side. We hope her right will follow.

Vivian Sitting at Champion Centre

Now that she’s rolling both ways, she’s spending a lot more time on her tummy than before, and is starting to bear weight through her left arm and push her torso up. She has been opening up her right hand a lot more than before when on her tummy and reaching with her right, which is great. We also want her to bear weight on her right arm here, too. She’s also been bringing her knees up every once in a while, but never while she’s bearing weight on her arms. One day, we hope! Then she can start rocking and that leads to crawling.

Vivian has started seeing an occupational therapist (OT), who is really lovely. Vivian adores her and I think the way she approached Vivian initially has a big part in this. She wore the same top every time she came over, and always approached Vivian from the same side, and never ever got right in her face, taking into account Vivian’s CVI (corticol vision impairment). She is working with Vivian to get her to understand her own body and to explore new & different toys, and is also completing a sensory profile on Vivian.

Vivian’s speech language therapist (SLT) has given us Vivian’s very first switch, which we can record messages on. We are working on Vivian calling us using the switch; so we might record Ben saying, “DAAAAAD!” and if Vivian is playing on the floor in the living room and she hits the switch, he’ll come in and see her. This is only a week in so we haven’t seen much to report back with but will keep you posted.

Other fun stuff: 

Vivian likes to finger paint! She tried it for the first time at the Champion Centre back in November, to make some Christmas decorations, and we’ve done it again at home with her once. Will be doing a lot more :)

Vivian First Fingerpainting at Champion Centre

We went and saw Santa for the first time in early December at a special ‘Sensory Santa’ session. They booked appointments for kids like Vivian before the mall opened, so no crowd, no mall music, and no waiting in line. She had a hellish night before so I was going to take her by myself and let Ben sleep, but he joined us and it went really well.

Vivian's First Picture with Santa

She was a bit of a wiggle worm and although Santa had her on one leg at first, he ended up having to hold her pretty securely in the middle of his lap to keep her from arching backwards. His beard was pretty funny and it looked like it was tickling her so she had a bit of a grin without us needing to get her to smile, which was great because I had to stand so far away from her I couldn’t even get her attention. The sounds were bouncing around the open area of the mall and she would’ve had a really hard time hearing us trying to get her attention.

She fell asleep immediately after getting her picture taken and we walked around the mall while she slept. Ben and I grabbed breakfast together in the food court and it almost felt like a date. It’s the first time we’ve actually been out and about, like a normal family, instead of going to and from appointments with Vivian. It’s hard to believe we’ve never taken her to the mall, or even into a grocery store before that day.

We had a quiet Christmas at home with Vivian; we’ve just been focusing on making every day a good day while I have time off of work. Ben’s parents came over to exchange gifts and brought us some really yummy food and then headed to Ben’s brother’s for Christmas lunch. We would’ve gone, but our car is in the shop and Vivian’s car seat is in our car. I got to catch up with my family back home via Facetime on Boxing Day, which rocked, and Vivian and I have been taking walks every day. It’s good exercise for me while I can’t get to the gym and it’s great to get Vivian to sleep :)

PHEW. I think that’s it. I’m sure there’s heaps I’ve forgotten.

Wishing you a very happy New Year! Much love and drooly kisses from Viv ;)

Advertisements

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! :)

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!

Baby food, Bath-time & Babbling

Ok, time for Vivian updates. The weeks keep going by so quickly, it’s hard to recap!

We’ve been on a bit of a high after our neurology assessment the week before last. Getting that news that we could look at weaning her off of her maintenance med if the spasms stay away was really exciting.

Overall the past two weeks have been pretty easy-going. Ben is finally over whatever virus he had and Vivian and I didn’t get it (phew)! We got into a bit of a sleeping routine where Viv would be asleep pretty early at night (but still waking to have milk and go back to sleep). Then she got some really bad stomach upset over Easter weekend. She was up every night for an hour or two in a lot of discomfort. I think it was me not getting a good balance of hindmilk and foremilk in her bottles. She is past it now but it was really poopy to see her so unhappy.

For physical therapy, we are still working on rolling and putting weight on her arms, as well as sitting up and grasping objects for longer than a few seconds. She’s started grabbing her left toes easily with her left hand and will cross grab to her right foot now too. She still doesn’t really do much with her right hand, though. I’m worried about her right wrist constantly turning at an awkward angle. Ben’s going to ask our PT about that this week to see if there’s anything more that we can do. Maybe a brace? I don’t know.

Her glasses really do seem to be helping, as well as her hearing aids, although she’s becoming really good at getting one or both of her hearing aids out now. This usually happens when she’s laying down and can rub her face on something or rub her ear against her shoulder easily.

We’ve also been back to the hearing specialists, who have begun preparing Vivian for reaction hearing testing. I’m not sure how well it will go, but it will be interesting to see. Basically whenever Vivian hears a sound and turns toward the sound, she is rewarded with a puppet show.

It took her a couple of tries, but she got there in the end. She would mostly “still” when the loud sound played, instead of turn towards it, which is still a positive sign. We didn’t think to bring her glasses to the appointment (doh!) and so it was probably hard for her to really see the puppet, and honestly, the office is pretty distracting for her visually, so I’m not surprised by this. We’re due back in another month for some more testing.

Food-wise, Vivian’s intake has been a bit all over the place over the past two weeks. It’s not been as good as it was last month, with her volumes ranging from 500-700ml. Not sure what is going on there, but we’re working on it (as always).

We’re still experimenting with solids, and yogurt is still Vivian’s favorite food, after her milk of course. Carrot & kumera were probably the next favorite, but only the homemade version. The store-bought Wattie’s organic stuff didn’t go down awesomely. Pear got the nod. We tried a bit of bread today, with her yogurt. It got really mushy, really fast. Maybe a bit the size of a pea made it into the back of her mouth.

Yummy

Purées have definitely been the way to go! I made up a batch of carrot purée today and put some coconut cream and breast milk and a knob of butter into it for some extra calories. Hopefully Vivian won’t have any reactions to the butter.

We did offer her the spoon today and she actually tried to get it to her mouth, which we were not expecting. This was during yogurt-eating though, which is the only food she’ll actually open up and attempt to bite the spoon for. Yogurt is tasty!

Spoon

We are looking at getting her a high chair this week. I think I’ve found a model that will have a high enough back and some shoulder straps to help support her like her therapy chair does. It’s getting hard to feed her on the floor!

One other awesome thing that’s happened is Vivian has finally discovered that bath-time is fun. Before now, baths could really go either way; she would either tolerate them with mild curiosity, while staying incredibly still in the water, or she’d have a meltdown of epic proportions.

Water is for kicking, she says! And kicking she does, very well indeed! So well that she can get Ben’s face wet while he’s standing in the doorway of the bathroom (6 feet up in the air). I’ve found the safest place is down low next to her; no splashes there :)

And lastly, Vivian’s babbling has come back in full force. I think maybe while she was working very hard on getting some rolling down, her babbling took a back seat. I was starting to get worried. We are still being referred to a speech-language therapist to start speech therapy soon (we see one at the Champion Centre and one from ACC, but neither have approached us about Vivian’s lack of speech yet). I am happy that she is starting to produce new sounds now – some L sounds and some M sounds. Experimenting with her tongue more, etc. And blowing TONS of raspberries! So. Much. Spit.

Big hugs from us to you. Slobbery kisses from Vivian. She loves to tongue my cheeks at the moment, but not Ben’s. They must be too hairy?

9 Months Old

Vivian was 9 months old yesterday.

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

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

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

Vivian Sleepy Feet

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

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

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

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

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

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

Vivian Glasses Pondering

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

Vivian Glasses Dad

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

Vivian Almost 9 Months

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

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

Vivian Squiggle Early Activity System

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

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

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

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

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

Keep Reaching!

Another week (and a bit) done and dusted!

Last week, Vivian’s reflux was acting up a bit, which means we’ve been revisiting intake land, and have had to up her Gaviscon doses accordingly. She’s been struggling a bit to pass everything with needing this much Gaviscon, so when we go to see the pediatrician at hospital again, we will be asking about alternatives to Lactulose, which apparently is very dehydrating.

Monday we went to the Champion Centre and Vivian only stayed for a half session. She woke up at an awkward time, and was due back to bed when we needed to be there, so she got pretty tired about half way through and had had enough!

Throughout the week Ben has been working with Vivian on her rolling and sitting. So far she rolls to her right much easier than her left, while on her tummy. She doesn’t like putting weight on her right arm to push over to the left, so that’s what we’re to focus on now. That and weight-bearing through her elbows, and getting her wrists to turn in towards her face (think of a baby doing little bicep curls).

Her ACC physical therapist was really pleasantly surprised about how well she is picking things up, like touching her toes. While she doesn’t do it unassisted on the floor yet, she does try at least and got her toes a few times while we have been relaxing on the bed. After Vivian warmed up with the PT, she attempted a few quick toe grabs while we were talking above her, which is great.

Vivian Toe Touch

 

Vivian’s little personality is starting to really show during these therapy sessions. The therapist can try to get Vivian to look turn to one side and Vivian will instead keep her head straight and turn her eyes. Cheeky! She is a sucker for a really sensitive snail toy that a lovely Mum sent us from up north; she found the toy too noisy, but it’s awesome for Vivian because it provides instant feedback when Vivian makes a move. Eventually the snail gets the better of her and she will turn for it.

After her PT session, Vivian had a quick play and then we zoomed off to get her fitted for her very first pair of glasses. Unfortunately they only come in two colors (guess which ones) but they should be pretty darn cute. Vivian’s really not going to love them touching her face unfortunately, so we will need to work with her to desensitize her to having them on. If all goes well we might be able to pick them up this Friday after Vivian’s hearing aid appointment.

This is Vivian’s latest sound discovery:

What I was actually trying to record #babyyodeling #hopeforvivian

A post shared by Gwen (@gwenami) on

This week we have Vivian’s pediatrician appointment coming up so keep your fingers crossed that she’s put on a decent amount of weight, please :)

Hope you have a wonderful week!

We’re on a Roll!

Happy belated Valentine’s Day!

VivianValentinesDay

Look at those eyelashes.

It’s been a really busy two weeks.

We have started sessions back at the Champion Centre, and our ACC PT has still been coming over. This extra time with a PT has been awesome for Vivian. She has started rolling from front to back with little to no assistance!

 

We are so excited by her progress. It’s really amazing for us to see. The night after we realized she was ready to start rolling, Ben had popped her on her front in her cot for some tummy time and then when he went back in a few minutes later, she was on her back. I didn’t believe him at the time, so we tried to get her to do it again, but she refused. Typical Vivian!

She will also help you if you start to roll her from back to front, so much so that now she can slowly roll the entire length of her yoga mat (with help), without becoming scared.  Very exciting for us!

We are still working on Vivian’s rolling, putting weight on her arms and knees, and sitting up, along with her grasp. Our ACC PT is ordering Vivian a special piece of equipment to help her with all of these things. It’s a Squiggles Early Activity System, from Leckey. It looks pretty awesome, so I hope it doesn’t take forever to arrive.

We had Vivian’s ophthalmologist appointment on Wednesday to test her eyesight. They ended up needing to put some drops in her eyes to dilate her pupils, which she wasn’t extremely happy about, but it was worth the extra information that the doctor was able to get.

He thinks Vivian has close to normal sight and said that she is long-sighted at the moment. And she has one eye that is slightly crossed at times, due to her brain possibly having to switch between one eye and the other constantly. He also didn’t think she had any degree of cortical vision impairment at this stage, due to her intermittent tracking and focusing on objects. We have a prescription for her first pair of glasses and we are now waiting for the optometrist near us to order in some frames to fit her tiny head.

The ophthalmologist said that we might see a big change in the way Vivian interacts with toys and us once she has her glasses on. We are really very hopeful about this. I am afraid of being too hopeful.

Vivian was also fitted for more hearing aid ear molds on Friday (very busy week!) and so we will pick these up next week. We decided to step outside our color comfort zone and go for a bright green color (ooooh, styley)! Hopefully it doesn’t look like she has stuff growing out of her ears, lol. I’m afraid of getting red ones because I don’t want people to think her ears are bleeding. Weird thing to worry about, I know.

More smiles from Vivian:

Previous Older Entries

Follow now & gwen on WordPress.com
%d bloggers like this: