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.
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!