8 weeks seizure-free

A month has gone by and I haven’t had time to post!  Things have been very, very busy.

Firstly, on the infantile spasms front, we’ve gone just over 8 weeks without a spasm (I think). This is great news!

happy_vivian_5_months

Vivian still has some very strong startles sometimes that make me wonder if they are spasms, but it’s really hard to tell. It only happens in the morning, and I only really see her in the morning on the weekends, so it’s difficult to really get a good sense. Ben says she doesn’t really do it that often. I don’t know. If it keeps happening I’m going to try to get some on video to show the neurologist.

Last weekend she may have had an absent seizure (not a cluster of infantile spasms), which lasted for some time and I recorded and sent to the pediatrician. Our neurologist said if it was just a one-off it probably didn’t do her any harm, but to watch and wait to see if there are any more. It was pretty freaky- her eyes would go to her left, over and over, and she seemed unresponsive during it.

We have no follow-up scheduled with her neurologist any time soon that I am aware of.

On the feeding front, things are slowly improving. We had a pediatrician appointment the week before last. Vivian hasn’t put on any weight, but she hasn’t lost any. We are still working on getting her feeding intake up. It is very slow going. They want us to get her on a feeding schedule so that she doesn’t snack all day. So for now we space out her feeds to have gaps of 2 hours without food, to get her eating a bit more at each feed. It seems to be working, and has resulted in her sleeping at night a bit better as well. If she doesn’t start gaining weight again, I think we will have to consider fortifying the breast milk she gets with something extra to pack in some extra calories.

We are battling oral thrush yet again. Her pediatrician suggested we try Nilstatin for another 3 weeks between appointments because she was off the steroids, but it didn’t work, so back to fluconazole again. We have another week left of that. Hoping it works. We won’t be seeing her pediatrician again until after Christmas, so if it doesn’t, will have to get her into our GP, I guess.

Developmentally, Vivian is still doing things at her own pace. No rolling over yet, but half rolls each day. She has started touching her knees with her hands, so we think she will find her toes eventually! We are still working on her grip as well as she keeps her hands closed much of the time.

Her therapists are still pleased with how far Vivian has progressed in the past two months. We are able to transfer her much easier than before, from capsule to floor and vice versa. We maybe get a meltdown every other day instead of multiple times per day. Verbally, she still sings to us every day and has started saying ‘m’ and ‘w’ sounds, so we get some mumbled ‘mum’s when she’s upset and a few ‘wa’s here and there. She’s also working on her squeal sound- not quite there yet but getting there.

I got my first real rolling giggle last night. It was pretty amazing! She has turned out to be very ticklish when she’s in a good mood and doing little tickles up her sides makes her giggle for ages. Ben, however, has been getting these real giggles for about a month now. He’s just funnier than I am :)

On the hearing front, we now have Vivian’s hearing aids. She only wears them for about 10 minutes at a time when she is awake and in a reasonably good mood. We have been so busy since we picked them up that she hasn’t had them in every day like she should have though. We are working on that. She gets pretty quiet when she has them in and likes to listen to music and our voices from across the room.

The part that sits inside her ears is purple, with glitter (pretty styley!); this part will need to get remade every month or so as her ears grow. The outer part is a pinky-purple color and won’t change color. We get two or three sets of these through the public health system for the next five years,  I believe. We were advised to get these itemized on our contents insurance policy, in case we need extra sets. Apparently once babies discover their ears, they get tossed and lost quite a bit.

Vivian's hearing aids

We are also now scheduled to get her vision checked, as her pediatrician voiced some concerns at our last appointment. We’re unsure as to what her vision is actually like. She does focus on faces and eyes sometimes, but other times does not. Whether this is due to the distance you are away from her, or something else, I guess we will find out.

On the overall home front, we finally moved house. The house I mentioned in my last update fell through the day after I posted, so the next week was spent frantically looking at more houses and trying to secure a rental. It was probably one of the most stressful weeks we have had since Vivian was born.

A place right around the corner from us popped up and we signed the lease the following week, so we were sure it wouldn’t fall through. Then we had a huge garden clean up at our old house, which was amazing. Some of my wonderful workmates and a few of our awesome friends came over and helped with this. Our yard went from a jungle to a respectable-looking garden in about 5 hours over two days. Many thank yous to everyone who was able to come! <3

We moved the next weekend after that and again some awesome friends came through for us and managed to lend a huge work truck, which made things go very quickly. It was a bit stressful for me because I was watching Vivian on moving day and couldn’t really pitch in like I normally would (yes, I am a bit of a control freak when it comes to moving house). I didn’t really get to help unload anything at the new house, which meant it was hard to unpack things quickly because I didn’t know where anything was…nothing being labeled when packed may have had something to do with this too (coughbencough). We are still unpacking this week but we don’t have much left to do, thank goodness. It could be A LOT worse, so I am not complaining!

The new house is a bit on the old side, but it will do for the next few years for us. It is $10 a week cheaper than our previous house, which is an added bonus! Everything else we were accepted for was a the top end (or over) our budget and that really wasn’t an awesome feeling.

I feel like there is so much more I could write about in this post, but it’s already incredibly long now as it is. I will save things for another blog post.

Hoping that you are having a happy Thanksgiving weekend over in the US and a lovely weekend everywhere else in the world. Will try to not go as long between posts so they aren’t novels in the future!

We made it to a month!

Happy Samhain and Beltane!

It’s been 4 weeks (and one day) since Vivian’s last spasm! We are quietly hopeful about this. Her last does of prednisolone was last Monday.

We haven’t had any follow-up appointment with our neurologist, though. Not sure if we will? We did have a follow-up with her pediatrician this week, which went OK.

Vivian is doing well, all considering! Her sleeping times have started to lengthen over the past week, which has been amazing for Ben and me. Although she still needs to be bounced gently to sleep in her hammock (at around 10-11pm or so), we are able to get her transferred to her bassinet successfully on most nights, and sometimes even before midnight. She has started sleeping through to about 4-5am with only one or two wake ups in between, which hasn’t happened since before she was on steroids.

The main thing we are working on at the moment is keeping her reflux symptoms in check without making her constipated, along with trying to get her intake up. And also, trying to get her feeding times spaced out more, and her feeds to be bigger in one session. While she was on steroids, she would easily take 120ml of expressed breast milk at one time, over 30-40 minutes, but once we started the wean off of them this all went downhill. She would only take 10-30mls at any given time, and because of this she wanted fed every 20-30 minutes, which didn’t help with her sleep cycles. I think the steroids played a big part in her cat naps as well, though.

Her pediatrician suggested we try reviving the feeding plan that the hospital gave us before we came home, and since Wednesday her feeds have gone up to around 40-50ml every two hours or so. We also created a very bad habit of feeding her while she is sitting in her hammock (due to the steroids making her HANGRY at night), so now she really won’t eat unless she’s sitting in her hammock. She used to be fine taking a bottle in our arms, so we are working on getting back to that too. It’s going to take a bit of time.

Vivian’s intake is slowly creeping upwards, and she hasn’t lost any weight in the past two weeks. She was slowly gaining until this weeks, and is holding steady at around 6.5kg. Her pediatrician really isn’t concerned about her weight dropping a bit, as she is heavy for her height at the moment, due to the steroids. This gives me some confidence that we can get her feeding sorted without her losing too much weight. We have another follow-up in 3 weeks, to keep an eye on her weight and intake.

Her head circumference went up a centimeter in the past two months, to just under 39cm. Not a huge growth, but still a growth. Her pediatrician still hasn’t actually told us what this will mean for Vivian, so we will be asking more about it during our next appointment.

Developmentally, she’s still chugging along. She’s started to kick her legs very quickly and to bang her heels down on the changing mat or play mat. She’s done a few half rolls, so we think she may start rolling over in the next month or so! She’ll will grab toys hanging above her now, which is amazing, although we are working on her opening up her thumbs more. Tummy-time is still a bit hated, unless it’s on Ben or me, and she does OK lying on her side and playing now. We’ve also gotten her a bumbo seat, which we tried out for the first time this week (she only thought it was OK, not awesome). And we’ve gotten our first half giggles!

 

Vivian has also started tolerating being worn in a baby carrier, which is HUGE. We wanted babywear so badly and it was so disappointing when we realized she hated being worn early on. Especially because being worn and carried upright is so good for development.

Thanks to a baby shower gift (thank you Evie and Jarratt!), we had a consultation with The Sling Lady here last month and she was amazing! She showed us some different carrier types and worked with us to find one that suited Vivian’s individual needs. We ended up borrowing a mei tai from her (hop-tye brand) and slowly started gaining confidence getting Vivian up in a front carry with it. One morning, I helped get Vivian up in the carrier on Ben, so he could sort out dinner prep while she was awake. I managed to get some quick pictures and left for work with both of them happy in the kitchen.

Hop_Tye

Thanks to Vivian’s fund we were able to buy our own hop-tye and we are now working on wearing her a few times a week so that she’ll tolerate it for a bit longer and we can eventually go for walks and outings without a pram (pram is hit and miss with Vivian). This will really come in handy if Vivian’s seizures come back as well, since she can’t be left on her back while she’s having spasms.

We are so thankful for all of her progress. Vivian has come so far over the past few months! We really wouldn’t have made it through without all the help and support from our friends and family and the kind donations to Vivian’s Givealittle fund.

Work is going well; it’s very busy at this time of year! And we have finally found a house to rent, after applying for half a dozen or so and being passed over. If all goes to plan, we sign the lease on Monday and will most likely be moving in the next 2-3 weeks. We have feelings of relief, and some excitement mixed in. Also, slight feelings of panic as I think about how much we need to de-clutter and how bad the garden has gotten here. I haven’t weeded the flower beds since the day Vivian was due! We’re looking at getting a one-off garden tidy to help with that before we move though. Oddly, our rental agent wants to do a scheduled property inspection the week before we leave? I don’t understand that!

Bring on the rest of spring- here’s hoping things keep improving!

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