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.
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!
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?