Lots of Firsts

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.

Zeat Seat OT

She also got her first pair of orthopedic shoes – Piedro Boots.  They’ll help keep her foot and ankles aligned when she starts to bear weight.They look 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.

Zeat Seat Happy

Much love and drooly kisses to you!

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Hanging in there

We left off from my last post determined to get Vivian on track with some solid weight gains. We got her steadily eating three solids meals a day along with her bottles, and we were all set to get her weighed again this past Tuesday, but unfortunately Vivian had other plans.

Last Saturday afternoon she started throwing up everything she’d eaten for lunch, and proceeded to throw everything she drank up after that.

Vivian ended up pretty dehydrated. It was pretty scary how quickly she went downhill and how lethargic she became. We ended up in hospital on Sunday morning and we tried syringing pedialyte into her mouth every five minutes to hydrate her. She would go for about 45 minutes at a time and then throw everything back up, so they admitted us Sunday afternoon into the children’s ward. One night with a nasogastric tube and she perked back up again enough to take a bottle and managed to keep it down, so we got to go home on Monday afternoon.

 

Thankfully we were only in hospital for a day, but Vivian lost pretty much all the weight she’d gained (and then some) over the past three weeks in those 36-48 hours. We cancelled her weigh in and will probably reschedule next week. We think her tummy is still pretty sensitive though, because she will randomly cry and bring her knees up like she used to when she had really bad gas.

I think we have been very lucky that this is the first time she’s been really sick though. Knocking on wood in hopes that was all of it for this year. The hospital thought it was a bug since it came on so suddenly, but we have no idea where she would’ve picked it up. We don’t know anyone that has had a gastro bug.

Since the hospital stay, Vivian’s sleep has been all over the place and she’s been extra grumpy. It has not been fun times here! Her fifth tooth also sneakily came up at some point (she now has three bottom teeth). She’s only just started napping again over the past couple of days and is back to eating three meals of solids plus bottles.

She tried a pancake for the first time today (we made her a tiny one) and while she did shy away from it at first, she let me put it on her tongue and she did actually eat some of it, once it was soggy enough for her to just swallow the little bits. That is a pretty big thing for her, so we were really happy about it. She definitely didn’t like holding on to it though, so as part of our therapy goals for the next six months, I think we will be getting a sensory profile done for her, which means she’ll be assessed to see what she can handle and what she can’t handle and we’ll be given some direction on how to help her overcome her aversion to certain textures.

Developmentally, Vivian is still trucking along at her own pace. We got her a bigger, heavier Oball and she has really taken to it. She’ll pick it up from wherever it is around her body, even crossing over her mid-line to pick it up from one side or the other with her opposite hand, which is good to see.

New OBall

She’s done a few sneaky rolls onto her back to her tummy, when we haven’t been in the room to see of course! We are still working on getting her to bear more weight on her arms and knees. She will need to have an xray soon to check that her hip sockets are developing OK, as this can be an issue when kids don’t bear weight through their knees and legs when they typically would.

Her glasses aren’t staying on much these days, because she’s discovered it’s very easy to pull them down past her nose! We will be scheduling an appointment with her ophthalmologist again soon to see what he wants to do regarding her strabismus. I’m nervous about that because I think he’ll suggest surgery.

Vivian High Chair

Our ACC therapists organised for Vivian to be measured for a special chair that will support her more than the high chair we have at the moment, as well as a stander to get Vivian upright and bearing some weight through her legs. I had really hoped that she would be sitting upright unassisted by now, but I’ve learned that things will come when they come and I should just concentrate on enjoying the journey where I can, because she is growing so fast.

And Vivian is still seizure-free! We are two months in on her wean off of the levetiracetam. Next week we go down to 1ml a day. Please keep your fingers crossed that she has no spasms or seizures.

Hope that this month brings you much joy and happiness! :)

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