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.
She also got her first pair of orthopedic shoes – Piedro Boots. They’ll help keep her foot and ankles aligned when she starts to bearlook 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.
Much love and drooly kisses to you!