Showing posts with label Ehlers-Danlos Syndrome. Show all posts
Showing posts with label Ehlers-Danlos Syndrome. Show all posts

Thursday, 26 April 2018

Baby Update - 25 weeks

Age:  25 weeks

Weight: He was weighed at 24+5 weeks and was 14 lb 9 oz (6.62 kg) which is another pound on in 4 weeks and he's finally doubled his birth weight!  He's following his centiles nicely now which is a relief too.

Health: His nappies, reflux and eczema seemed to have improved quite nicely with me cutting out dairy but he's still not quite right - quite unsettled, lots of wind and not full resolution of the eczema.  As you'll see from the next paragraph we have started weaning and yesterday he had some avocado on toast which he loved - he didn't actually swallow much but he enjoyed chomping on it.  He was really unsettled all night, feeding every hour, a couple of really runny nappies and a lot of wind then today he's woken up with a nasty eczema flare on his face and had 2 nappy explosions, both of which have caused a rash on his back wherever the poop touched them (despite it being cleaned up within less than 5 minutes).  He had such a tiny amount that it may be coincidental but we are going to try avocado and toast separately in a few days to see if either causes the reaction - we think it may be bread as it has soya in it and it's not uncommon for babies with CMPA to have soya allergy too (and would explain why he improves off dairy but not entirely).

Feeding: He's still breastfeeding 2 hourly most of the time but has been going up to 3 hours at some point during the night most nights.  As I mentioned above the Health Visitor who weighed him gave us the go ahead to start weaning and suggested finger foods so we cracked on with baby-led weaning.  He has tried steamed broccoli and carrots which he wasn't keen on - he didn't seem to mind the taste but they were so soft he was having trouble holding on to them, they kept slipping out of his grip or just squashing in his hands.  He fed himself a little potato puree with a spoon which was a hit.  As mentioned above he really enjoyed avocado on toast and he loves sucking on a hard slice of apple or pear (as we found out when he stole mine and Ant's fruit).  He had a bit of omelette this morning with no obvious reaction so hopefully there's no egg allergy!  I'm really enjoying the weaning, even if it is a little scary, and he seems to be enjoying it too.

Sleep: Sleep has been up and down, we had a few nights where he was really settled until around 1 am then fed every couple of hours, got in bed with me at 6 am and slept until almost 9, which was great.  However, last night (possibly due to the food issue above) he fed almost every hour and was really upset in between - I finally caved and put him in bed with me around 5:30 am and he managed to sleep until just after 8 am but there was a lot of fidgeting and trumping!

Routine: I'm really struggling with wanting to take him to groups as they all fall around naptime. He's settled himself into a routine where he'll have about 45 minutes sleep in a morning, around 10 am, half an hour at lunchtime (around 1 or 1:30 pm) then a good 90 minutes-2 hours around 4:30 pm and all the classes are either 9:30-11 which hit his morning nap or 1:30-3 which hits his lunchtime nap and if I keep him awake when he's tired he then really struggles to get to sleep so I feel he's missing out.  Hopefully we will be able to start going to some afternoon classes once he drops his middle nap.  The only exception to this is swimming which is at 1 pm and unavoidable.  However, by the time we've got him home, bathed and fed it's around half 2 and a nightmare trying to get him to sleep so I wouldn't want to do it for other groups - I love swimming with him but dread Mondays for that reason!  

Likes/dislikes:  He's been moaning constantly for the last 4 days and just generally grumpy.  He's been really chewing at his fingers so I thought he might be teething but there's no red gums and we've been in this position before - I'm assuming it may be a developmental leap.  So this week he basically dislikes EVERYTHING!  He's only really enjoyed eating and swimming this week - although he did love the paddling pool at the weekend.  He does however love his Wubbanub dummy toy  because he can get it in his mouth easily and he likes holding onto the cuddly part and fiddling with it.

Firsts:  First paddling pool experience, first tastes of solid foods, first trip to the farm - it's been a busy week!

Milestones: He's FINALLY doubled his birth weight which is a big one for us, considering how slow he was to gain weight in the beginning!  I guess the big milestone this week is starting weaning and we're all having so much fun with it - it's great that daddy is home for a few hours in the middle of the day as it means he gets to join in too.

Things we did: We bought a paddling pool at the weekend and took OJ in it for a little bit - but typically it got cold and rainy 10 minutes later!  We went with some friends and their children to a farm park, again we got rained on and called it a day earlier than we would have liked (we were prepared for OJ but neither ALS nor I had a coat, dumb parents).  We had a massive blitz of our living room on Sunday and finally got everything organised, got some pictures on the wall and generally tidied the space up.  We've spent lots of time experimenting with foods and reading about weaning in the last few days and today we had a nice visit from ALS' parents.

Me: Honestly I'm a bit exasperated this week - I'm still full of cold so finding it hard to sleep and when I finally do manage to sleep OJ wakes up wanting a feed.  As I mentioned above he's been grumpy and making a constant moaning noise which is very draining and I feel like I'm not keeping him happy, which makes me sad.  I'm also dropping weight again and I'm now sitting at 53.1 kg (5.4 kg below my pre-pregnancy weight and a good deal lighter than I can ever remember being).  People keep commenting on it but I really have no idea what to do - I'm eating well and eating good amounts, even adding in dairy-free brownies and cookies to get some extra calories in!  It may be from breastfeeding and OJ stealing all my nutrients, along with the cold, but generally I only drop weight so rapidly when I'm having a flare of my illness and it's a sign of bad things to come... hopefully that isn't the case though.


24 weeks 1 day - finally back asleep after a 3 am wake up with his silly cough.



24 weeks 1 day - snoozing on his walk.


24 weeks 1 day - another nap, trying to catch up on his sleep so I slid away and replaced myself with a cushion (it didn't fool him for long).


24 weeks 2 days - using the paddling pool as a ball pit whilst daddy cut the grass.


24 weeks 2 days - "Are you nearly done yet daddy?"


24 weeks 2 days - finally in the paddling pool... for all of 10 minutes before it rained!


24 weeks 3 days - knackered from his trip to the farm.


24 weeks 5 days - first ever solid food, he wasn't convinced because he just kept squashing it and there was nothing left by the time he reached his mouth, he also didn't seem keen on the texture as he was pulling faces just touching it.


24 weeks 5 days - 10 minutes later he was happy to steal daddy's pear and have a good munch!


24 weeks 5 days - a little later on he spoon fed himself (and the table and me and the high chair and the floor and the cats) a little mashed potato which he rather enjoyed.


24 weeks 5 days - then he STILL stole some of my apple 10 minutes later!


24 weeks 6 days - absolutely loved his avocado on toast.


24 weeks 6 days - snuggling his Wubbanub!


25 weeks - serious face trying to get at the camera while I tried to take a picture of his nasty eczema (which looks fine on this photo).


25 weeks - omelette time!


25 weeks - decided the bib was tastier than the omelette...!



Friday, 20 April 2018

Baby Update - 24 weeks

Age:  24 weeks (except I'm posting a day late because I was too ill yesterday... and this is the second time I've typed it up because I did it this morning and it didn't save for some reason)

Weight: He is due to be weighed in a few days time so I'll update next week.

Health: He's had a nasty cough and cold this week, which he's kindly shared with me.  He's still been pretty chirpy but it's taken its toll on him a little!  It's hard to tell how his reflux is because he's coughing and vomiting so much anyway.

Feeding: He's getting much quicker at feeding now and all feeds tend to be under 10 minutes unless he's sleepy.  He's also really easily distracted.  He feeds 2 hourly most of the time but he usually goes for 4 hours in a morning - he'll feed around 6 am, sleep for a couple of hours then wake up and play until around 10 am, which is nice for letting me have a lie in when daddy's around to get up with him!

Sleep: Sleep hasn't been great but that's to be expected with him being all congested and coughing a lot.  However, the night before last he did go from 8:30 pm until 1:30 am which is the longest stretch we've had in a LONG time, I thought my boobs were going to explode!  When he naps in the day he regularly does this weird whining/crying thing in his sleep (it occasionally wakes him up) but never at night, it's really odd.

Routine: Nope... that's all I have to say about that!

Likes/dislikes:  He's absolutely loving swimming at the moment, we even got a smile after a submersion the other day for the first time.  He's really enjoying crinkly toys too and loves to chew on a spoon (or two).  He's really not a fan of being still, in fact I don't think he is EVER still.

Firsts:  First nasty cold, first time out in the sunshine without having to be bundled in warm clothes and blankets!

Milestones: He's really coming along with his sitting and can sit for a good 20 minutes or so, or until he sees something he wants that is out of reach and throws himself towards it!  He's also transferring objects (he has been for a few weeks but I keep forgetting) between hands and has learned to shake his rattles rather than just chewing on them.  He's so close to rolling back to front too - he can basically do it but when he realises he's on his front, rather than pulling his arm from under him he just rolls himself back over, which isn't surprising considering if we put him on his tummy he just rolls straight over.  He tends to be happiest on his side!

Things we did: We had a relatively quiet weekend, OJ spent lots of time with daddy whilst I prepared a load of purees for weaning.  However, I have decided I'd rather do baby led weaning so I'll probably end up using most of the purees in porridge etc. or just giving him the spoon and letting him go to town by himself.  For the last few days we've not really done much as we've both been poorly but we've had a couple of nice sunny walks and today we've cracked down on reorganising our living room and moving all the furniture into better positions so that OJ has more floor space.

Me: I'm absolutely full of cold and exhausted from both of us being poorly.  As OJ won't take a bottle and has been comfort feeding through his cold I'm having trouble fighting off my own cold.  ALS is amazing and takes as much of the pressure off as he can but unfortunately he doesn't have breasts!


23 weeks 1 day - still a bit too small for his 3-6 month outfit from his aunty in Australia but he's rocking the Simon Cowell look, don't you think?


23 weeks 1 day - he loves Lucozade bottles so I've made him some shakers, including the one between his legs, but he still insists on taking the one I'm drinking from!


23 weeks 1 day - happily munching on a spoon whilst mummy gets ready for weaning - he's a few weeks off starting yet but I like to be prepared.


23 weeks 2 days - loves a good selfie.


23 weeks 3 days - wakes up, goes for a snuggle with daddy, steals his phone... standard Sunday morning.


23 weeks 3 days - poorly boy snuggling my boob after lots of coughing fits and some milk to make it better.


23 weeks 4 days - 4 am wake up call with lots of coughing and sneezing, poor little mite.


23 weeks 4 days - fast asleep again by 7 am after lots of milk and snuggles.


23 weeks 5 days - sitting up like a pro!


23 weeks 5 days - isn't he just the cutest?!


23 weeks 5 days - he was ignoring his toys and trying to eat my foot but caught me when I tried to take a photo... I think his face says it all!


23 weeks 6 days - in his first summer outfit looking smiley because he learned how to share (his cold) and then looking thoughtful because I told him he didn't need to share everything and I didn't really want it - I jest, he was trying to figure out an answer on The Chase haha!


23 weeks 6 days - is this how baby led weaning works? (Disclaimer:  We haven't started weaning early or given him a whole packet of snacks, the packet wasn't open but he loves playing with anything that crinkles).


24 weeks - another 4 am start but with daddy this time, lucky daddy had him back asleep in half an hour and he was still like this when I got up at 8 am.


24 weeks - impromptu trip out in his little sunhat (cue me panicking because he would be too hot in the footmuff but I didn't have anything else to cover him with and I had nothing to shade his face... I was much more prepared later on when we went out again).


I'm a big advocate of home cooked food for babies but there will be times where we are in a pinch and need something practical (such as at competitions) so we've stocked up on these goodies for special occasions.  How awesome are the Ella's Kitchen pouches with the attachable spoons?  OJ should be able to have a good go at feeding himself with those too!  Also, we are low on storage space in the kitchen and need to reorganise so for now we are using an empty cat food box to store all his bits and bobs... whatever works, right?




Thursday, 1 February 2018

Baby Update - 13 weeks

Age:  13 weeks

Weight: He was weighed on Tuesday (12 weeks 5 days) and was 11 lb so a decent increase.  He's still only just above 2nd centile but it's a start.

Feeding: Pretty much the same as last week - we've had a couple of days where he's fed a lot and a couple where he's gone up to 4 hours.  There's really no discernible pattern to his feeds yet but that's fine.

Sleep: He's been up a bit more overnight to feed in the last few days but I think it's his reflux making him uncomfortable.  His medicine was increased a couple of days ago so once that kicks in hopefully he'll sleep a little better again.  Naps in the day are still hit and miss - he naps really well on me but often wakes up if I put him down.  Even if I take his cues to put him down for a nap he tends to lie for a few minutes trying to fall asleep then ends up wide awake giggling at me!

Routine: It's pretty much non-existent because I'm too exhausted at the moment to wake him up at a set time so I just get up when he wakes up but we generally follow the pattern of feed, play, sleep (with a sleep every 2 feeds usually) during the day and he has a relatively set bedtime routine but just whenever we go to bed rather than a set time.  He is pretty adaptable so it's working fine for now.  Once he can sleep in a room unsupervised then we'll hit bedtime properly.

Likes/dislikes:  He loves watching people pull faces and make silly noises at him.  If we have the TV on he's mesmerised and I don't like him watching it so instead I've shown him a couple of Baby Einstein videos on YouTube and he enjoys those.  He's still not a big fan of tummy time but he's getting used to it if we prop him up on a pillow rather than lying him completely flat.  He also really hates the car - if he's tired he might fall asleep but otherwise he just screams, he's often sick in his carseat too so I think it's the reflux making him uncomfortable which is making him cry.

Firsts:  We had our first family photoshoot (mainly photos of OJ) and I'll post a few when we get them back - we've seen them and I almost cried, he's so adorable.  He properly held himself up during tummy time on a pillow for the first time - I've managed to get videos but no photos.  He also went to his first powerlifting competition and was amazingly well behaved all day!

Milestones: Propping himself up during tummy time.

Things we did: OJ had his 3 month jabs last Friday, we went out for a meal to celebrate his arrival with friends and family, ALS had a powerlifting competiton on Sunday and we've been cramming in lots of gaming for Weemas.  

Me: I'm down to 56.4 kg weight wise which is lower than I was pre-pregnancy - but again I blame the loss of muscle for that.  I'm still struggling and in quite a bit of pain with my joints but I'll get there.


12 weeks - showing Mr Panda his sassy face.


12 weeks 1 day - post vaccination snuggles.


12 weeks 2 days - all tuckered out from his photoshoot!



12 weeks 2 days - we had an early night after the meal and by the time daddy came to bed this is where his feet were... he has real trouble keeping them in his sleepsuits!


12 weeks 3 days - enjoying his first powerlifting competition!

12 weeks 3 days - sleeping through all the excitement.


12 weeks 5 days - wearing all his Mickey Mouse gear!


13 weeks - sucking his fingers, his new favourite pastime! 



Thursday, 25 January 2018

Baby Update - 12 weeks

Age:  12 weeks

Weight: He hasn't been weighed in a couple of weeks (weigh in is on Tuesday) but I'm pretty sure he's put weight on just from how it feels when I'm carrying him around... or I'm getting weaker!

Feeding: He's been very fidgety but feeding plenty, although he's been sick a lot more this week too.  He's also developed an annoying habit of dragging on my boobs with his hand while he's feeding which yanks my nipple away from him and nearly tears it off!

Sleep: He's still great overnight - touch wood - but is very hit and miss during the day.  He often won't nap until he's exhausted and then will only sleep on me.  Other days, like today, he sleeps most of the day to catch up.

Routine: We are trying to get in a routine as OJ has been fighting sleep all day the napping late in the afternoon which means he's awake when ALS gets home around 8 and doesn't sleep until we go to bed at 11.  Whilst that's fine now (and nice for ALS to see him in an evening) it will end up being a problem later on.  So far I've just started getting OJ up at the same time every morning and I'm hoping he'll fall into his own schedule... mostly it seems to just mean he's tired and cranky from being woken up so we'll see.  Honestly I'm happy to follow his lead for now as he's so young but obviously when he gets a bit older him being awake until we go to bed will mean we can't chill out together and watch our TV shows or anything.  It's a work in progress...

Likes/dislikes:  He loves a good cuddle but only when he's sleepy.  When he's awake he likes being held up on your shoulder so he can look around.  He likes chewing on things, especially your fingers - if you hold his hand he'll stick your hand straight in his mouth - although he moves his mouth to your hand rather than moving your hand.  He loves action songs and being bounced up and down too.  He's not a fan of being ignored and if you're not entertaining him he'll shout at you and let you know but generally there's not much he protests about.

Firsts:  He did his first submersion at swimming which he completely took in his stride!  I also gave him a bath without daddy's help for the first time last night - we coped just fine but my back didn't appreciate leaning over the big bath!

Milestones: No major milestones this week.

Things we did: We've been out for a couple of walks, been to visit ALS' parents, been out for a meal with my mum and grandparents.  We've introduced lots of new toys, books and action songs.  We managed a full swimming lesson with daddy there as well.  

Me: I absolutely love being a mum but in all honesty I'm struggling.  Whilst trying to get OJ into a routine I've been getting up earlier, which is fine, but I've not been getting to sleep until 1 am because my brain won't shut off.  Everyone tells you that if you're a sleep deprived parent you should get someone to take the baby for a while so you can sleep but nobody tells you what to do if your baby sleeps really well but you still can't sleep! I still have 9 months left off work but I'm already lying awake worrying about leaving OJ. The lack of sleep is causing my EDS to flare up and, despite good food and regular exercise, my body is killing me - it feels like I have the flu or a giant bruise covering my whole body.  ALS is trying to build his business up so I don't have to go back to work but I still have to do at least 3 months or I'd have to pay back my maternity pay.  Hopefully my brain calms down soon!  I love my son more than life itself and I don't want to end up so exhausted that I can't do fun stuff with him :(



11 weeks 1 day - fast asleep after a very long walk!


11 weeks 2 days - practicing his head control.


11 weeks 2 days - ear defenders ready for daddy's powerlifting competition next week!


11 weeks 4 days - early morning snuggles in mummy and daddy's bed.


11 weeks 4 days - trying to eat his wrist rattle.


11 weeks 5 days - first nap in his crib (thank you hairdryer)!




11 weeks 5 days - amused by his own feet whilst daddy multitasks and writes client programmes.



11 weeks 6 days - first sleep in his Moses basket since he was 3 weeks old, instead of napping on mummy in the daytime!


12 weeks - proper little man!


12 weeks - first Weemas, napping whilst mummy and daddy do some gaming!