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!

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?

Missing Ophthalmologist Notes

Skip this post if you want updates on Vivian – this is more about the New Zealand medical system and how frustrating it is at times. I will be writing a Vivian update post tomorrow, I promise!

I have started the referral process for Vivian to be assessed by the Blind and Low Vision Education Network New Zealand (BLENNZ) for corticol vision impairment. I had no idea I could start this process myself and was waiting for the ophthalmologist to test Vivian for this but he didn’t. I would rather try and get a diagnosis early on so we can get some vision therapy in place sooner rather than later but he and our neurologist seem to think it’s far too early to test for this, although they have both said repeatedly that she will undoubtedly have some degree of it.

Before I realized I could self-refer Vivian, I’ve had to call the hospital’s eye specialist clinic at least a half a dozen times to get the notes/records sent to me from the appointment we had in February. They initially sent me a letter that they also sent to Vivian’s pediatrician, but I wanted another copy of her prescription for corrective lenses and any notes he took on the tests he preformed, so I could forward them on to BLENNZ with the referral form.

After a few more increasingly frustrating phone calls wanting to speak to the opthalmologist to ask why he didn’t test for CVI, I received a phone call from the opthalmologist that I sadly missed, stating that he would move up our follow-up appointment (originally set for 6 months away) and that he didn’t feel the need to test her eyes for CVI until she was 18 months old.

Well, the eye department couldn’t even produce this. They referred me on to patient information and said I would need to request the records from there (with a release form). I did this and they sent me the same letter I had already been sent… This lead to more emails between myself and patient information, who were waiting on the eye department to find the notes, because apparently I should have called the eye department for these. Hello? I did. Numerous times! They told me to call patient information!

Finally we end up with a new letter from the opthalmologist, addressed to me on 1 April…stating that there seems to be some question of whether Vivian actually needs corrective lenses (there is no question about this in my mind? I never ever insinuated that there was) and whether the corrective lenses would help with her strabismus. He then wrote that her prescription was +1.50 in each eye, which is very ‘weak’, and said that the lenses wouldn’t make a difference in the strabismus, so she didn’t need to wear them all the time if they were causing her any sensory issues.

Honestly, I think he wrote this off the top of his head, to cover his ass, and that he probably didn’t even take proper notes at our appointment. I got the optometrist to send over a copy of the prescription we’d brought in. He originally gave Vivian a prescription for +3.50 in each eye, a much stronger prescription than he is stating in the letter. The optometrist who fitted her glasses said she should wear her glasses “every waking moment”. What in the honest fudge – are we even talking about the same baby? I called the eye department again and informed them of my serious concerns about this incorrect information. Of course the opthalmologist is now on holiday until next week so we will not know if Vivian even has the correct prescription until he gets back. I’m assuming she does have the correct prescription and he was relying on memory to write this letter, as the eye department cannot find any further notes from the appointment.

Baffling. And ridiculous. And a complete waste of my time and their time. The good news is the BLENNZ Christchurch folks have contacted me and they’re coming to assess Vivian in May.

I honestly don’t know how parents are meant to navigate this system without giving up out of sheer frustration. If I wasn’t so persistent I really feel like not a lot would be done for Vivian. Super frustrating, and super tiring. It should not be this difficult.

Epilepsy Means to Me

Gwen:

A post about what epilepsy means to a parent.

While Vivian’s epilepsy is controlled at the moment, it doesn’t mean that it always will be. So far we have been lucky to not see any more infantile spasms clusters or seizures, but we may not always be so lucky.

Epilepsy rarely stays the same in anyone.

Hoping that Fiona’s mum is getting some sleep tonight. I thank her for writing this.

Originally posted on Star In Her Eye:

I’m usually late to parties, and last Thursday it was Epilepsy Awareness Day. So I’m arriving today. Here’s “what epilepsy mean to me,” as they say.

Epilepsy means that Fiona and this kit are never separated.

IMG_2433-0 Sealed, rectangular Tupperwear container with plastic syringe inside.

Epilepsy means this kit goes into the diaper bag, into my purse, wherever Fiona goes. Because inside the kit is the medicine to stop a seizure if it happens and if it goes on too long.

Epilepsy doesn’t mean that a person who is seizing can swallow his/her own tongue. I first learned this in a Cincinnati hospital after Fiona’s first seizure. That is one enduring myth, I thought. I was 33.

Epilepsy means that, when my husband and I went on a date the other night, and I found this Guide to Troubled Birds,

Book: Guide to Troubled Birds Book: Guide to Troubled Birds

 I thought…

View original 628 more words

No News is Good News

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

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

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

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

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

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

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

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

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

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

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

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

Obligatory photo from our walk yesterday:

Happy Walk

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