The cake itself was enjoyed by all. We ordered a cake from Cakes by Anna, who makes amazing cakes here in Christchurch. The got a lovely small lemon, lime and raspberry one full of tangy, tart flavors that Vivian likes in the hopes that she’d actually want to eat some. It usually has gin in the icing but that was swapped out for raspberries and it usually comes with heaps of toasted coconut on top, but that texture would’ve been vetoed by the birthday girl. It was delicious.
Vivian actually took a few swipes at the icing this time and then promptly dropped raspberries all over the place.
She especially enjoyed being sung to, as long as it was in an octave higher than anyone would normally use ;)
It was pretty adorable and fun for the few minutes it lasted. She quickly exclaimed that she’d had enough of this cake thing and wanted back down to roll around on the floor.
Her actual birthday was hard to swallow for me; I actually forgot it was her birthday until I got to work, and then I felt guilty for not remembering until then. Mom of the year! Then I wished I had better memories of the day itself…and for the first few minutes I was home that evening, it was hard to think about while looking at her. Hard to wonder if we could have changed anything on the night she was born, so that the difficulties she has faced didn’t have to happen. The what ifs, the should haves, they shouldn’t matter anymore.
They’ve still crept in, unwanted, usually as I’m trying to drift off to sleep. They have still been my faithful companions for 2 years, during quiet moments in the car. While Vivian has cried and kicked through the night, after all our singing and bouncing and rocking has failed her. When I’ve seen how tired Ben is and when I’ve seen the worry flicker across his face. When I’ve looked at other kids her age and wondered if she would do the things they do, if she could. If her injury hadn’t happened.
And then I looked at her again, and she smiled as I said hello and she said hello in her Vivian way. And the what ifs all melted away. She giggled and it was OK again.
I asked Ben how he was feeling after Vivian finished giggling, and he just said he was tired. He didn’t realize I meant how he was feeling in the big scheme of things. It creeps up on him in different ways than it does me. The other day he told me he noticed Vivian seemed to get really frustrated that she couldn’t move in the direction she wanted to go in and she looked around and started to cry. It made him sad to think that she could be getting more and more frustrated each day when she wants to do things but her body doesn’t listen fast enough. It made me sad to know he was sad.
But we continue to push on. And she is amazing, regardless of how we thought things would happen when she was born. We don’t allow ourselves to stay in sad what if land for very long because it doesn’t help anything. And honestly, nobody’s got time for that!
Vivian’s been living up to the terrible-two stereotype. It’s mostly sleeping issues still. Some nights it’s normal toddler waking, but most of the time it’s discomfort. Kicking and crying, arching and bucking. It’s not fun for anyone, especially Vivian. There could be some teething mixed in — two-year molars? — but we can’t know for sure.
We do know her motility seems normal at the moment, and she’s not refluxy, so we’re stumped. We hope it passes soon.
She threw a tantrum last night when I was trying to put her shoes on, so I could get her into the standing frame. She wanted to be on her stomach and I kept rolling her over to her back. You would think the world had ended! I didn’t blame her. Who wants to be torn away from the amazing sliding panel on the entertainment unit? How could being stuck in a standing frame ever compare to the wonderful ‘THWACK!’ the panel makes when you roll it hard enough to hit the other side and bounce back to the middle?
She’s definitely developing her ability to say no, in her own Vivian ways. And also to say yes. It’s amazing to see how much she truly gets, that I didn’t realize she was getting.
I don’t even know where to start on updates.
More of the above. Ben and I still attempting to do the shift sleeping to cover wake ups, although I am now working full-time so it’s harder to make sure we’re all getting good sleep. I feel incredibly guilty that Ben wants me to get the most sleep, because he thinks he can catch up on sleep when she naps; some days she doesn’t want to nap so he gets shafted. I think we manage to go to sleep at the same time maybe once a week, if that.
Vivian is understandably fussy on days where she has had shit sleep overnight. It doesn’t help her therapy or learning if she’s exhausted.
Currently waiting to meet with ACC to discuss sleep study options. May end up finally going to Auckland to the Wilson Centre in the Spring.
Physical therapy: She’s making amazing progress with standing for longer and longer periods. We removed her knee guards from her standing frame probably 8-10 weeks ago? and it was very hard work for her to stand without them supporting her knees. You would have to keep a super close eye to make sure she wasn’t faltering and slouching in her frame. Now she will happily stand for 30-40 minutes and watch a Baby Einstein show, alternating her weight back and forth from left to right legs and playing with throwing her weight backwards and forward in the frame. I am sure she’s not supposed to do that, but I don’t see how we can really stop her. Some days this is easier than others, but I guess that’s life.
After she spends that time in her standing frame, she’s starting to do some freestanding with just your hands on her hips for support. Then she gets tired of this after a few minutes and wants to lean on the entertainment unit. I’m well aware no child should watch TV that close. It’s only for a minute or two each day, so hold your horses.
I wish we had a therapeutic bench for her that was a better height, as the unit is actually too short for her and she has to lean down/bend at the waist more than I’d like her to. It’s still amazing she even wants to do that after standing for so long. She is getting so much stronger now.
We’re still working on sitting independently for longer periods of time. It’s all about balance and really, Vivian’s want to do it. She will often lean back to rest on you simply because she can. She’s stubborn, what can I say?
She’ll now prop up on her hands and knees for longer and longer periods, which only really began over the past 2-3 weeks. Before, we would get lots of angry yelling while she worked on this, because it was such hard work, and now that only really happens when she’s tired and over it. She is really sitting up quite tall, and Ben and I both saw her push up from hands and knees to just her knees for a few seconds the other day. Her PT is sure she’ll end up pushing herself over backwards from this position before she ever goes forward, but that’s how she’ll learn.
Occupational therapy (OT) Vivian’s working on accepting new textures and toys. We’re introducing new toys slowly by placing them next to her favorite toys. Not forcing her to look directly at them, but just introducing them on the peripheral in the hopes that Vivian will show interest in them. She usually just tosses them to the side to get to her favorite toy, Sammy the snail. Oddly enough, some toys she used to like have now started freaking her out, especially if they make noise. We’re not sure why exactly; perhaps she dropped one on her face while it was making noise and it frightened her?
Speech-language therapy (SLT), we are still working on Vivian using switches to make choices. Last week the SLT suggested we also use sign language when we say yes, no, more, and finished. Personally I think the hand movement between yes and no is too similar and I think it might be too small of a difference for her to pick up, because it’s hard to get her to look at your hands.
I also don’t know that she has the fine motor skills to control her hands in that manner to replicate the movement, but I guess it’s more about receptive than communicative language. I am a firm believer that she understands what we’re saying verbally anyway, due to the words she is starting to show recognition for – bottle, tickle (she’s started tickling her right arm with her left hand if you say tickle, to show she wants her arms gently stroked), brushing, finished, show on (God forbid the show ends. The world ends if the show ends!), etc.
Also still working on the book reading with switches, although it’s further down on the priority list (there’s only so much you can do in one day when you have so many things to work on!). Some days she likes it, others she hates it. Flip a coin!
Vivian probably only has an inch left in her current standing frame. I think we’re due to look at new ones very soon.
We’re currently trialing an adaptive stroller system called a Bingo Evolution. It’s pretty flash. It should last Vivian for at least 3-4 years and hopefully take all the wear and tear that goes along with it. I think it will be the one we end up going with, but there is still one more we are looking to trial at the end of the month that seems comparable.
The only thing that I’m concerned about is getting her a winter bag/foot muff thing to go over her legs when she’s in the chair, as unlike a regular pram/stroller, Vivian’s legs aren’t backed by any solid fabric in this chair. The bag part that goes with the chair is $500 to buy separately and the ACC equipment specialist said that it’s our responsibility to keep Vivian warm and dry, so ACC would not fund it.
I find this a bit ridiculous, because if Vivian did not have an ACC claim, we would not need a special chair to get her out and about, she would be in a normal pram, that would come with a normal winter bag to keep her warm and dry…so they should fund it. We’ll see what happens. I haven’t talked to our case manager about this yet. It feels petty to dig my heels in over this in the big scheme of things, but that’s $500 we could spend on clothes, food, and diapers for Vivian.
I’m also concerned about the orthopedic inserts we got for her Piedro boots. They look like they’re a bit too high in the arch area, and that they’re causing Vivian’s feet to point slightly outwards inside the boots, even if the boots are straight on. Ben said both PTs saw them and said they were fine, but it seems to me like the boots were ordered too large, with the hope that they would last Vivian longer (and therefore be cheaper for ACC), but maybe it’s me over thinking things. I might get her back into Orthoptics just to have a look at the positioning of her ankles, because the ortho lady who looked at her hips a few months ago did say to watch her ankles and if at any point it looked like she was putting weight down through her inner ankles to the inner arch of her foot, she would need to get ankle-foot orthotic braces (AFOs).
We got Vivian’s Upsee from Firefly by Leckey. It’s pretty awesome.
We’ve only used it couple of times, but should increase that on the evenings and weekends soon. It’s a two person job to get Vivian and Ben suited up, so Ben can’t really get her in it when I’m not home. Vivian has started to do some early walking with Ben while freestanding, where he moves her legs forward with his feet by shuffling very slowly, but so far isn’t moving her legs forward by herself. I hope that she shows the want to move on her own soon, in order to get to things she wants. She hasn’t really shown that real want to get from point A to B on her own as much as her PT would like, so she hasn’t looked into ordering her a gait trainer yet (walking aid that sort of looks like a backwards walker).
Eating and drinking: Vivian is really getting the hang of guiding the spoon to her mouth. Still not keen to pull the spoon out with her hand though, so she drops the spoon, lets it hang, or pushes it out with her tongue. Or, if you’re not fast enough, she quickly drops the spoon and moves her head away to get it out of her mouth while you’re holding the spoon.
Her SLT suggested we let her bring the spoon to her mouth and while we gently keep a hold of the end, quickly use one finger to keep the spoon in her hand (easier to show than explain through text), but Vivian is far too clever and quick for that mess, which is why she’s gotten faster and faster at taking her hand off the spoon once it hits her mouth. She has started to also want to put it into the side of her mouth, rather than the center, and wants to chew on the spoon, so I think we’re due for some molars soon.
Vivian still doesn’t want to touch the food with her hands much. She refuses to try things if you are holding them with your fingers rather than a spoon, unless you make a huge song and dance out of booping her tongue until she tastes it. She’ll push your hand away over and over and get upset until you stop, unless you can get her to see it tastes good. This means any sort of dry solids are a no go, unless you work very, very, very hard and you are very, very, very patient, and you have an hour to spend on feeding for one meal. It is frustrating, for both parties.
She will accept almost anything on a spoon though. Even if it’s something she just refused that you were holding to her mouth. Spoon = safe. Hands = medicine? She wasn’t always this adamant about it. I am wondering if it’s a vision issue, because she is no longer wearing glasses. It doesn’t mean she can actually see perfectly, and she was far-sighted, so things up close may be blurry?
Drinking: she is now on formula, as we didn’t want to source donor milk any longer. We figured there were younger babies who needed it and Vivian started to accept formula. So now she still gets as many bottles as she’d like of half-strength formula. Hoping to swap her to water soon, but that will be slow going.
She started showing a lot more awareness of where her tongue was and started making little sucking noises so we have begun feeding her some fruit puree from a pouch with a straw on it to hopefully start transitioning her to sucking on a cup with a straw soon. The SLT has ordered us a drinking set that has a squeezy bottle and straw with a one way valve on it, so you can squeeze the bottle to get liquid up the straw and it stays there until it’s sucked out, so Vivian won’t have to work so hard to get liquid all the way to the top of the straw. Fingers crossed it works.
No more tantrums after meals when we put our hands up to say finished. But much ignoring until there’s no way to ignore than the food is gone. We quickly move on to brushing teeth and she is getting better and better with that, even starting to hold the brush if it has an Eazy-hold strap on it.
Eyes: We were back at the ophthalmologist’s office last week. He thinks Vivian’s sight is OK, and that glasses aren’t going to make a huge difference (because she wasn’t tolerating them). He does not want to do surgery to correct her inward-turning eye because he thinks it may not cause that much of a difference to her development, saying that her vision is not a high priority to the rest of her development. I have heard the opposite from parents of other kids with HIE, where their child’s development has really taken off after having the surgery.
Then, in the same breath he says that the younger the patient is when they have the surgery, the better the chance of them gaining good control over their binocular vision. Most doctors perform that surgery when the child is between 1-2 years of age. I feel like that’s a cop-out, and I think that we should have it if it can help her in any way, especially if it will make it easier for her to see. er brain would no longer have to swap between eyes, which is very tiring.
It’s almost like saying because she has global developmental delays, we should concentrate on other areas than her vision because they’re more important, because she obviously has some level of vision already. If your child has had a strabismus surgery, can you please share your thoughts in the comments or email me?
Ears/hearing: Vivian seems to be hearing fairly well when she doesn’t have her hearing aids in. So much so that the audiologist believes her hearing has improved somewhat. Unfortunately the test to determine this can’t be done while Vivian is awake so we won’t know unless she has to be put under for whatever reason in the future, but it’s something we’ll look at if Vivian ever needs surgery.
In the meantime, Vivian still wears her hearing aids for a good portion of the day, working up to full-time.
Hips & tone: Vivian is now overdue for her second round of hip x-rays…surprise surprise! And also overdue for a follow-up pediatrician/specialist appointment.
The ortho lady who arranged her first x-rays should arrange another set soon. She checked Vivian out this past week while at the Champion Centre and says she thinks her hips are fine. Increased overall tone on her right side (meaning her right side is held tighter than her left) but nothing new to worry about. If Vivian’s tone on her right side gets worse, we may have to look at botox injections when she gets older. I am hoping more standing time will help stretch out that right hamstring.
Teeth: Vivian is now seeing the hospital pediatric dentist, instead of a private dentist. He wants her back in a few weeks to monitor her molars for any signs of decay. He mentioned that kids with HIE injuries are prone to having moderate to severe enamel defects on their molars, so he wants to keep a close eye on her second set when they come in because it makes them prone to decaying. He wants us to brush after breakfast and dinner, and apply dental mousse at night while she’s asleep.
He also told us to wean her off of her bottle at night. On top us already not getting great stretches of sleep, now we meant to cut off her bottle…one of the only things that can get her back to sleep when she wakes up. I understand that milk sitting on teeth is not good, but some kids just get the shit hand when it comes to genetics and circumstances. If Vivian is one of those kids, I don’t think a bottle at night it going to change that much. If I was breastfeeding he’d have said the same thing. There are only so many battles we can fight and still be sane during the day.
I think that’s everything I can think of at the moment! Thank you for reading along and supporting us over the past 2 years. I looked back at my Facebook posts (they’ve been popping up in the “On this Day” section) and there are so many comments I didn’t get to reply to, and messages of support from so many of you. We couldn’t have made it this far without the village that is you.
Much love and drooly kisses from Vivian to you. And a cheeky grin. :)