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.

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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?

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