Weight: 19 lb 4 oz (8.75 kg). He's lost a little weight since his birthday but that's to be expected as he's had a full 10 days of diarrhoea with a little vomiting too and had a couple of colds too. He's had no appetite but it seems to be on its way back up now so hopefully next month his weight will be back up.
Health: Since he started nursery he's had a string of colds (which means I've had a string of colds) and then a nasty diarrhoea bug which he's just recovered from in the last few days. We also think he may be teething again! However, we do have a bit of good news. Since removing soya from his (and my) diet after his birthday his reflux seems to have settled down completely. He struggles a lot less with wind at night and his sleep had been somewhat improved until he got this bug/started teething again. He's been really upset over the last couple of days and unsettled at night so we've decided to cut his gluten/wheat content down to a bare minimum, although I won't be removing it from my diet, to see how much difference it makes.
Sleep: As I said above sleep did start to improve somewhat with the elimination of soya but it's gone downhill while he's been poorly. First he had colds and was congested, then he got a cough (and is still chesty on and off 3 weeks later), then he's had issues with diarrhoea and vomiting and probable teething so it has been hard work. The last 3 or 4 nights have been horrendous, he's been going down okay but waking frequently in the evening and from around midnight just been attached to my boob constantly and not settling for more than 10-15 minutes at a time so I am absolutely drained. Tonight he's actually been down for 2 hours since he had his almond milk so hopefully the rest of the night will be slightly more bearable. On a positive note though he's started napping at nursery and for ALS so at least I can share the burden a little bit - we had one night last week where I was quite sad because I couldn't get him to settle down but he immediately went to sleep in ALS' arms when he lay down with him. It is a good thing really but I like being his favourite!
Development: His development has been absolutely on fire lately! He's really got the hang of walking, although he still can't stand up from the floor without pulling up on something. He definitely has the strength but I don't think he's even considered that it's an option. His language hasn't improved much but he's babbling more and if you ask him who I am he will sometimes say "mama". He's started shaking his head at absolutely everything which is rather cute. He's not learned any of the signs we've been using with him but Mr Tumble has taught him the sign for "magic" and we're incorporating lots more of them into daily life. He is into everything and climbing on everything. He's learned to comfortably climb down from things backwards now too. He's really got the hang of building with his big blocks that his uncle bought for his birthday and he's getting better at turning individual pages of books instead of turning them all at once.
Likes/Dislikes: He's still not a fan of the car and is starting to get angry being in the pushchair too, he just doesn't like being restrained in general and even protests if you try to put a blanket over him! He got very angry earlier because we bought a dummy clip so he can't keep throwing his dummies out of the pushchair and he had a major meltdown about it. He loves building towers and knocking them over, he likes ramming into things with his walker and Mr Tumble is his new favourite thing - we love him too!
Nursery: We are so proud of how he's settled in at nursery. He's starting to get the hang of the routines and doesn't kick up much fuss when he's dropped off. He's eating reasonably well there after refusing everything for the first couple of weeks - he sits in a chair at the table like a big boy with a plate and everything! He's also started napping there and the naps have gradually increased from 20 minutes to around an hour which is great. His Key Worker has got a great bond with him and they send us multiple updates every day so we can see how he's doing and what he's playing with.
Me: I'm actually enjoying being back at work although I'm struggling in terms of tiredness and not having enough hours in the day to do all the other things that need doing. OJ seems to play up a bit more for me now either by refusing to sleep or just being grumpy when I get home but I think that's just because he misses me and is letting his emotions out. In a couple of weeks I will be starting my self employment which means I'll be working 5.5 hours on the 2 days I'm off work and a few hours at the weekend. It's going to be hard work and I'm not convinced I will do it for long unless it ends up paying really well but we will give it a go. Now that I'm happy at work I'm not so bothered about being self employed and we've decided I need to stay in fixed employment at least until we've had our second baby (fingers crossed) so that I can have proper maternity pay. ALS is also now looking into wanting his own gym so he will need help with that and there just aren't enough hours in the day. While I'm working two jobs I'm not going to get much time with OJ in the week and I'm going to miss out on things like swimming but I feel like I have to give it a go as the Princes Trust have helped me so much - I smashed my panel meeting last week and am waiting for a mentor to be allocated to me.
I tried to get back to the gym a couple of weeks ago but then have been ill every weekend since so once again I'm failing. I'd lost weight again but that's gone back on so I'm sitting at a steady 50 kg, which is still ridiculously light for me. I really think I'm ready for OJ to be weaned now (assuming we can find other ways to get him back to sleep consistently) because I could do with being able to put dairy/soya back in my diet and also being able to hand over to ALS completely just for the odd night here and there so I can get some proper solid sleep. He's great at the weekend when he's at home and lets me have a lie in when he can and since I've been back at work OJ is definitely getting more comfortable with going to sleep with daddy instead of me so hopefully things will start to improve somewhat.
Mine and my husband's journey to have a child free from Huntington's disease and keep future generations safe!
Wednesday, 5 December 2018
1 year old - week 4
Day 1 - I really love how well these two have adapted to the new routine with me being back at work and the selfies I get are great!
Day 2 - morning snuggles with Mr Tumble after a night involving a lot of vomiting and diarrhoea for OJ and a major headache for mummy!
Day 3 - 13 month growth photo, it doesn't even look like him!
Day 3 - wonderfully candid outtake... not sure what he's smiling at though!
Day 3 - sneaky ride on daddy's shoulders.
Day 3 - walking through the park with mummy.
Day 3 - off to play with daddy.
Day 3 - he mastered climbing this in no time!
Day 3 - where's my baby gone?!
Day 3 - nom nom nom.
Day 3 - playtime with mummy.
Day 3 - balloons still going strong from his birthday.
Day 3 - he kept twanging it with his teeth then looking shocked.
Day 3 - loves his balloons.
Day 6 - looking like a proper big boy munching on his apple.
Day 6 - I know it's an apple tree but that one isn't meant to go in there!
Day 6 - I went to make dinner, came back and daddy was just sat watching him climb in and out of his book box.
Day 7 - tonight he went to bed with a bottle of almond milk (although he had breast milk before we went upstairs), there was a lot of faffing about while drinking the first couple of ounces but then 40 minutes later he settled down, guzzled the remaining 5 oz, grabbed his dummy and fell asleep on his Gruffalo toy! Any progress is good progress!
1 year old - week 3
I didn't take nearly enough pictures this week!!
Day 1 - I love getting little updates like this from nursery, he's showing that spinosaurus who's boss!
Day 1 - check out that face!
Day 1 - having a whale of a time at soft play with daddy while mummy's at work!
Day 1 - daddy feeling very proud that he got OJ to nap in bed... what you can't tell from these photos is that daddy dressed him by putting his t-shirt over his PJ top!
Day 2 - little dinosaur at Costco.
Day 4 - tonight we decided that it's time to start gently, gradually weaning OJ off the boob. He fell asleep relatively well without it then ended up inconsolable a few minutes later. We blame teething - there has been lots of diarrhoea so weaning will have to wait.
Day 5 - afternoon nap refusal meant mummy had to go out in the rain and get VERY wet getting OJ to sleep in the pushchair.
Day 5 - refusing dinner too and only wanted a boobsicle which calmed him down.
Day 5 - super sad little man just lay on my lap for ages twiddling his muslin and watching Mr Tumble (our new favourite).
Day 5 - so inconsolable after his bath (he screamed as soon as he touched the water and he has a sore bum so I got him straight out) that I fed him before getting his PJs on and he fell asleep over me!
Day 5 - awake again before long, you can tell he's not himself when he's willing to lie and snuggle like this. In the end we had to take him out in the pushchair to get him down!
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