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!
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!
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.
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.