Recent doings

I have a few posts I want to write, but here’s a quick one for now. I haven’t done one of these since 2019!

“Recent” is very much relative in this context. Some of these things will be from December. (How are we nearly half way through January?!)

Old photo purely to make the post more interesting…

Eating. Lots of soup because it’s one of the few things Zyma will consistently consume a decent amount of!

Drinking. Latte Macchiato so the baby can have the foam from the top. If we go to a cafe that makes “babyccinos” I have hot chocolate or chai latte.

Reading. I took the first week of January off work in case Zyma needed some help getting settled back in to nursery. She ended up doing really well though, meaning I had time to myself and actually managed to read. Right now I’m re-reading Tomorrow, When the War Began by John Marsden. I want to re-read the first six books so I can finally read the final one and finish the series.

Watching. Jan got a whole bunch of Terry Gilliam films for Christmas a few years ago and we finally watched two of them: Time Bandits and Zero Theorem. Both a weird, Zero Theorem slightly less so. We watched Richard Osman’s Festive House of Games over Christmas/New Year but now the normal one is back on I keep forgetting about it! I also made an exception to my no TV for babies rule and let Zyma watch The Snowman at Christmas.

Making/cross stitching. I stitched a few Christmas cards (not as many as in previous years) and most recently I made New Year cards to send the blind children from Post Pals charity (those who aren’t blind got ones I had purchased, I only made the ones that needed to be tactile).

Buying. Clothes for the baby. Not that she necessarily needed more right now, but it was the winter sales… I also bought a couple of books for Erin’s book challenge since I couldn’t manage to fulfil all the categories with ones I already own (despite owning so many!).

Hoping. I can stop breastfeeding soon. I planned to go to one year, but Zyma wasn’t consistently eating enough solids at that point and hadn’t mastered drinking out of any kind of cup. She’s now doing a great job at drink cow’s milk from a beaker with a spout (but will only actually take it with her evening meal) and starting to show a slight interest in water, so if we can get her to eat full meals more consistently I might be able to think about fully weaning at some point.

Wondering. At what point I have to start referring to Z as a toddler rather than a baby? She’ll be 13 months on Monday! (16th January… fun fact: she was born exactly a month before my dad’s 60th birthday). She’s not even close to actually toddling yet, but I’m not sure we can really use that as a benchmark considering we have no guarantee she will ever walk without aids…

What have you been doing recently?

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One year of Zyma!

It’s been two whole weeks (yesterday) since my daughter turned 1 and I’m only just getting around to posting about it. Where do other people with small children find the time to do anything? I thought I would have at least a little time to myself now she’s in nursery and with Jan still being off work until January, but between work (I do 20 hours a week), appointments and preparing for Christmas I feel like I’ve had even less time than when I was in sole charge of the baby all day long.

Since I wrote my last post she stopped rolling for a while but now she’s back to it. However, she will only roll from her front to her back. She then immediately sits up – a skill she learned at the beginning of December. One day after her 12-month spina bifida check up. She had been practising for about a month and was so close but only actually managed it the following day. It would have been very convenient if she had managed to demonstrate for the specialists but that’s okay.

Her favourite thing is still being out and about. Not long after I wrote my nine month blog post she learned to wave and she’ll wave and wave at people all day long. She gets so excited when they wave back and is all beaming smiles. Everyone comments on her smile and how happy and social she is. I really hope she never loses that!

Waving at minipig piglets during a trip to the zoo with Grandma in November

The day before her birthday she learned to point, first at the string lights on the bookcase, then at ceiling lights and street lamps. She loves all the shiny Christmas decorations and lights. She also got a book about dogs for her birthday and was able to point out the dogs for us. Now she points to dogs and cats outside. Plus – more embarrassingly – people. We’re working on learning that it’s rude to point and she should stick to waving 😉

We had her one year check up at the paediatrician, and cognitively she’s right on track. She understands loads, uncovers objects, points, claps and waves, reaches out her arms when she wants to be picked up and knows the names of her two favourite stuffed toys (Oscar the octopus and Kai the okapi). Physically, however, she is behind – which is to be expected with her condition. At her last appointment in Zurich, one of her specialists told us that even those children with spina bifida who can walk perfectly without any aids take their first steps late, usually at around 2 years old. She still lacks muscle tone in her lower back and glutes, which is part of the reason she still hates being on her tummy and will immediately roll over (and then sit up). It’s hard to lift your head when your back muscles are weak! Although she kicks both legs – and will even kick on command – she doesn’t make even the slightest attempt at crawling. It does make some things easier – we’ve barely had to baby proof yet and there was no need to worry about the Christmas tree since she has no way of getting to it 😉 – it’s bitter sweet seeing babies much younger than her already crawling, pulling to stand and even cruising along furniture. Our only hope is that she doesn’t get too frustrated when she sees that the other children in the babies group are gradually becoming more mobile while she’s left behind, stuck sitting wherever she was put. She still has physiotherapy and we’re currently particularly working on transitions – now that she can sit up by herself she has finally started going from sitting down to her side to pick up a toy and will also stretch much further forward than she used to when trying to reach something. What we would really like is for her to go on her tummy on purpose to get to something, but that currently seems to be a way off. She will whine and point for half an hour rather than getting herself into the dreaded tummy position. We use dry wipes and tap water to clean her for nappy changes and the one time she is willing to go on her tummy is if I place her face down over my knees and let her play with the water in the bowl. I can’t let her do it for too long though otherwise we end up with a puddle on the living room floor! She’s started really to really enjoy splashing in the bath as well. It looks like we’ve got a little water baby on our hands!

Admiring the view of Basel

Her last spina bifida appointment was mostly good. It’s still too early to say whether she will stand and walk and we’ve been recommended a new type of therapy that may help her achieve more mobility. Coincidentally, at her next physio appointment after the day in Zurich her physiotherapist mentioned the same kind of therapy and even did the research for us to find someone in Basel that does it! We had one trial appointment before Christmas and will be setting up some more soon. It will be a lot of work though as we will have to do the exercises with her at home 3 times a day. In the end, that will mostly fall to me since Jan is back at work on Monday and will be in Zurich three days a week, which means leaving the house by 7 a.m. and not getting home until Zyma is in bed. Her MRI in October showed that the top to ventricles in her brain are fine. However, the third ventricle is very slightly enlarged. There is no sign of any pressure in her brain and the fluid seems to still be flowing normally, but they wanted her to go for an extra MRI in January just to be safe. As they said it would be negligent to just say “well, she’s obviously fine so we’ll leave it until her next regular MRI in a year’s time!”. She also has to go to an eye doctor because that third ventricle connects to the optic nerve, so we have to get the back of her eyes looked at to make sure there#s nothing going on there. The bladder medication seems to be working and they were pleased at how well things are going with catheterisation. We’re now giving three doses of her medicine instead of two so it’s split more evenly across the day and doesn’t wear off by early afternoon. When she’s at nursery, we’ve arranged for carers to go in at around 10:30 a.m. and catheterise her there and so far it’s working really well. Zyma has absolutely no problem with it.

Birthday cake!

We’re so proud of how well she’s taken to nursery! Of course, it took less than two weeks for the germs to get her and she came down with a cold the week of her birthday. Luckily we didn’t really have anything planned anyway since our families live so far away and had all been to visit in October and November. She spent the morning of her birthday mostly sleeping but perked up a bit in the afternoon to open her presents and try a little bit of cake. I used this recipe for carrot cake muffins, but made it as a small cake and adapted the recipe slightly. My version left out the raisins and I added 50g of sweet potato (steamed and mashed) plus 30g of apple/pear puree for a little sweetness. When I did a trial run (in muffin form) they tasted too savoury so I experimented with adding fruit and sweet potato until I got something a little sweeter but still healthy enough for a baby. For the topping I used cream cheese with orange zest and also squeezed in some of the juice from the orange to give it a little flavour. Zyma tried about three bits of the cake then had a large spoonful of the “frosting” – she loves cream cheese!

She is still mainly on milk for nutrition but her eating is gradually getting better. While she had a cold she ate almost no solids, and a lot of what she did manage ended up being coughed back up. We’re back on track now though and she will usually at least try something at every meal. She even ate 10 spoonfuls of soup at nursery once, which is a lot for her! She loves soup of all kinds, scrambled eggs (I put ricotta in for added nutrition and she gets really excited to eat them!), mandarins, bread and croissants. She’s also a big fan of milk foam from the top of coffee. A few cafes offer a “babyccino”, which is hot milk with foam on top, and she will happily eat all the foam off one of them and sometimes even have some of the actual milk as well.

There’s really nothing left to say except that I can’t believe I’ve been a mother for an entire year (plus two weeks). It has been a joy and a privilege to accompany Zyma on her first trip around the sun. I’m so proud of the cheerful and determined girl she’s turning into and I’m so excited to watch her continue to grow. My only wish is that she stays exactly this happy and we can help her overcome the challenges spina bifida throws her way.

Spina bifida awareness month

I ink found out recently that October is Spina Bifida Awareness Month so before it’s over completely I wanted to write a post.

Before Zyma’s diagnosis I didn’t know much about spina bifida. My brother-in-law actually has it as well but it had never come up as a topic of conversation. He walks slowly and with a bit of a strange gait but he walks. I also had a cousin with spina bifida who died at 3 weeks old (before I was born – actually while my mum was pregnant with me). Here was a more severe case and I had always been told that if she had lived she would have been in a wheelchair. So the extent of my knowledge was that part of the back is open (spina bifida actually means “split spine”) and it affects mobility.

Six-day-old Zyma waiting to go for her first post-birth MRI

When Zyma was diagnosed we had various meetings with experts who explained all the various ways she could be impacted. Spina bifida is known as a snowflake condition because no two people have the exact same combination of issues even if their lesion (opening) is in the same place. It’s a neurological condition that potentially affects all the nerves below the lesion. In Zyma’s case that’s around L4, so as well as the legs that means the bladder and bowels. Digestion can be slowed and the kidneys may be affected. Without the operation before birth Zyma’s legs would have been entirely paralysed and she would have needed a wheelchair. Her hips wouldn’t have been affected though, so she would have been able to sit independently.

The other thing I didn’t know about spina bifida is that the spinal cord can actually be stuck at the bottom, known as tethering. This causes the brain to also be pulled down towards the neck, which blocks the ventricles and stops the brain fluid from draining as it should. This is one of the main causes of hydrocephalus, or water on the brain. Babies who are born with this have to have a shunt – or drainage tube – fitted within a few days of birth. The other end generally drains into the abdomen. After Z’s diagnosis I found out my brother-in-law has a shunt and it had to be renewed at some point because it wasn’t long enough. That’s not supposed to happen – generally they put in a pretty long tube to start with. The usual reason a shunt has to be renewed is because it gets blocked. Luckily the surgeons were able to untether Zyma’s spinal cord during the foetal operation and so far she doesn’t need a shunt. We were told that if she doesn’t need one by a year old she probably won’t need one at all. By 2 years she almost definitely won’t. After the surgery the ventricles in her brain were within normal range throughout the rest of the pregnancy and still looked exactly the same when she was a newborn. They’ve since widened slightly but were stable between the 3 month and 6 month appointments so as long as they stay that way all is good. She recently had an MRI, which is technically part of her 1 year checkup so we won’t actually see the neurosurgeon and get the results until then – unless something looks seriously wrong and she needs urgent surgery. Since it’s been over two weeks and we haven’t heard anything I’m hoping it’s safe to assume that isn’t the case.

Currently the only part of Zyma we know is affected is her bladder. She has neurogenic bladder, meaning the nerves and muscles that control the bladder don’t work together well. In her case, the bladder is overactive. The muscles constantly contract when only a small amount of urine is present. Over time this could cause urine to flow back into the kidneys, so she’s now on medicine to keep her bladder calm and we catheterise her four to five times a day. later, she’ll be able to do it herself.

So far she’s taken everything in her stride with only minimal fuss/crying – all the appointments and tests, the medication and catheter, physiotherapy. She’s a smiley, friendly baby who charms everyone she meets.My little superstar was absolutely worth everything we went through to have her.