So last week was pretty horrendous. This new feeding schedule is supposed to be freeing up time for me and Little O, but it's actually become a little more taxing. On Thursday for example, Little O woke us at 5am for a throw-up and scream fest, but then did settle down again until 7.30am... for another throw-up and scream fest. He basically hasn't gotten all his PediaSure overnight since we started this routine a week ago, so on Thursday morning I just dumped out the remainder and put it back in to the fridge so I could give it to him later in the day via a bolus gravity feed. (I hate that term: bolus gravity feed. It makes me think of bowels and space and Newton and, for some reason, balloon catheters. It's just a really irritating phrase.) So that day I had to give him his remaining PediaSure at 9.30am because he got fussy and I correctly interpreted that as hunger, then water and an oral feed at 11.00am because his speech therapist came over, and finally set his pump to run at 12pm for his regularly-scheduled nap. It meant I spent allllllll fucking morning feeding (or fretting about feeding) my son.
It's been pretty much the same story all week.
Anywhoo, my husband and I weighed him tonight before bed and Little O has gained three ounces! Yay! He was 23lb 3oz last Thursday (July 29th), and weighed 23lb 6oz today (Aug 7th). It's not a great gain, but I WILL TAKE IT! We're still not jumping up and down, but hopefully this is the start of a better journey. The more weight he puts on and the bigger he gets, the more his stomach will be able to tolerate (in theory, I stress), which means we can up the pump rate and he'll hopefully keep more down. It's all a matter of biology I suppose.
My Mum is coming to see me next week! She'll be here for my birthday, which makes it the third year in a row I've had family out to Wisconsin on that day. It's rather remarkable and I feel incredibly special, but it is helped by both my parents working in education and August falling during the UK schools' summer holidays. She'll be bringing over D, who is a lovely young chap who lives with my Mum and Dad, and who has had a rather interesting start in life. It's not my place to discuss his affairs online, but I'm looking forward to seeing them both. (Worth noting is the fact he's openly gay, before anyone raises an eyebrow at a 52-year-old woman and 22-year-old man going away together on holiday.) Hopefully D will help break some of the inevitable tension that accompanies those times my Mum and I get together.
Mmm... they're bringing some Cadbury's Dairy Milk too...
In anticipation of their visit, my husband and I have been madly preparing the house for guests. Normally this involves washing the sheets on the guest bed and cleaning the bathrooms (both done far too rarely), but we've gone a little mad this time.
On the list this weekend:
1) Go to the DMV for the Ford's MOT/emissions test
2) Vacuum carpets
3) Clean carpets (we bought a fancy carpet cleaner machine for this, seeing as Little O gets our house rather filthy, and it's already paid for itself after four months)
4) Wash all bedding (yup, all three beds)
5) Tidy and organise the basement (a rather big job, which we're excellent at avoiding)
6) Clean oven inside and out (again, a job done too rarely, but I seem to have fallen in love with the self-clean programme and I fancy this will be done more often now)
7) Clean microwave (ditto... sigh)
8) Clean both bathrooms (I refuse to do this. It's gross)
9) Wash all non-carpeted floors
10) Clean upholstery in living room (our fancy-pants carpet cleaner has a gizmo for this, and Little O's goo gets EVERYWHERE)
11) Mow lawn (I actually really love doing this)
12) Stain the deck (we did this earlier today and now it's a rather startling shade of orange. Oops)
13) Replace batteries in kitchen clock (cheap piece of crap)
14) Go grocery shopping
15) Dusting
16) De-flea Bob (all done now! He shrieked like you wouldn't believe, but that shampoo is awesome. And now we have clean carpets and anti-flea stuff down too, so those little buggers better find somewhere else to live)
17) Finish toy box (my husband's job. He started making Little O a toy box for his birthday... which was in May... sigh...)
18) Put up curtain tie-backs in guest room
19) Replace air filter in heating/air conditioning unit (it's been well over a year, and who knows how long it had been there when we moved in. We changed it today and it was black)
20) Clean kitchen top to bottom
21) Laundry
There are others, but we've either done them already and I've forgotten them, or we're clearly never going to do them and I've also forgotten them. But at least five of those items on the list are BIG JOBS and it took us all day today to get them done. Tomorrow we're going out for brunch at the Botanical Gardens, thanks to our lovely friends J&G, who gave us a voucher for free babysitting and two paid-for brunches to use whenever we chose. I'm trying really hard not to stress about leaving Little O for a couple of hours because I know he'll be safe and loved, but I'm such a control freak when it comes to my son. It's really hard to spend all day looking after him and then hand him off to someone else, no questions asked. I feel guilty and a little bit lost. I need to work harder at letting go... but I don't really want to...
This post is a little bit of a ramble, I know. It's probably very boring to read about the chores we're getting done this weekend, but I felt a bit absent after my last post and I wanted to write about something utterly mundane. And chores are pretty fucking mundane.
I still miss Anthea. She moved in to a new flat a few weeks ago (they OWN it! In London! How cool is THAT?) and hasn't had any internet since then. She also works in education so it's not like she can nip in to work and get online for a few hours. It means I haven't chatted to her for aaaaaages, and right now she, her husband, her son, my other sister V, and my Dad are all on what sounds like a rather hilarious canal boat holiday. My Dad's always wanted to go on one but my Mum prefers city breaks so we never did it as children. Now Mum's flying over to see me, and Dad's taking the initiative and cramming four adults and a one-year-old on to a narrow boat for two weeks. It will be absolutely fucking hilarious and while I miss them like crazy, I also can't wait to hear about how much they got on each other's nerves and how my Dad nearly capsized a 30ft-long canal boat in some random lock.
Good times, man... good times.
Tina.
Showing posts with label Formula. Show all posts
Showing posts with label Formula. Show all posts
Saturday, August 7, 2010
Wednesday, August 4, 2010
Panic over!
It's all okay! Now I can stop being distracted and dropping stuff and forgetting what I'm supposed to be doing, and concentrate on not flipping out for the umpteenth time this week that Little O's food pump keeps leaking PediaSure all over his bed.
So, it's good news... but wow. That was close.
Tina.
So, it's good news... but wow. That was close.
Tina.
Thursday, July 8, 2010
Oh, poo
I have a dilemma.
At the moment, my entire house smells like an odd combination of strawberries, vomited PediaSure and poo. I can't seem to escape it, no matter which room I go in to and I'm blamimg Little O.
According to our insurance plan, we are allowed to order two flavours of PediaSure a month. (The mind boggles as to why they think a child will be content only eating two different things a month, but that's besides the point.) This month we have strawberry and chocolate, as well as some vanilla and banana cans left over from last month. We tried Little O out on the strawberry stuff and he LOVES it! Normally he couldn't give a toss when we offer him a drink, but now he's begun to lean forward and move his mouth towards his cup, asking for more. It's quite something, and we're doing our best to encourage it.
The vomiting still hasn't ebbed, which I predicted would happen. So now we have layers of stains on the living room carpet where he gets fed (I know, I know. I should be feeding him at the dining table like a 'proper' family, but when feeds take an hour you need to have SOMETHING to do that doesn't involve using your hands, and I'm afraid putting the telly on is a simple solution). These stains were once very white (Neocate), then cream (PediaSure), and now they're turning pink (strawberry PediaSure). It's quite revolting, but I'm afraid cleaning the carpets every day is just not going to happen. Which is why the house smells like strawberries and vomit.
The real problem is the poo, though. Little O is still training his digestive system on how to process longer protein strands, so he's creating dirty diapers several times a day. But now they're... interesting. They've changed colour so much during the last month or so that I'm still not sure what to do. The initial changes were attributed to a possible C. difficile infection, which was treated with antibiotics, and it did improve things a little. His stomach seemed to hurt less, which was nice, and the frequency of changing him declined a little - we were up to 10 or 12 dirty diapers a day a few weeks ago, and now it's more like three or four. But I'm still not convinced that there isn't something wrong with his tummy.
His poo is currently pink. Yup, pink. Obviously I'm thinking the pink strawberry PediaSure is responsible for this, but I have NEVER SEEN PINK POO BEFORE. It's freaking me out, to be honest. I mean, when he was on certain antibiotics his poo was a bit purple, or a bit orange, but never pink! It's alarming to unwrap a nappy and see that staring you in the face. Oh, and it's not consistently consistent, either. In the early mornings it might be almost as solid as a normal toddler's, but by 9am his 'present' is as runny as water. And they ALWAYS have a really unusual smell. There just doesn't seem to be any progress.
So what do I do? I don't know whether to just keep pumping the PediaSure into him and keep my fingers crossed his body will eventually adapt, or whether to bother the GI clinic AGAIN with my concerns. I hate being that parent and I do my best to solve riddles by myself instead of bothering busy clinics, but until now I've always trusted my instincts and my instincts have always been right.
It's just that right now I'm not sure what my instincts are. Any thoughts?
Tina.
At the moment, my entire house smells like an odd combination of strawberries, vomited PediaSure and poo. I can't seem to escape it, no matter which room I go in to and I'm blamimg Little O.
According to our insurance plan, we are allowed to order two flavours of PediaSure a month. (The mind boggles as to why they think a child will be content only eating two different things a month, but that's besides the point.) This month we have strawberry and chocolate, as well as some vanilla and banana cans left over from last month. We tried Little O out on the strawberry stuff and he LOVES it! Normally he couldn't give a toss when we offer him a drink, but now he's begun to lean forward and move his mouth towards his cup, asking for more. It's quite something, and we're doing our best to encourage it.
The vomiting still hasn't ebbed, which I predicted would happen. So now we have layers of stains on the living room carpet where he gets fed (I know, I know. I should be feeding him at the dining table like a 'proper' family, but when feeds take an hour you need to have SOMETHING to do that doesn't involve using your hands, and I'm afraid putting the telly on is a simple solution). These stains were once very white (Neocate), then cream (PediaSure), and now they're turning pink (strawberry PediaSure). It's quite revolting, but I'm afraid cleaning the carpets every day is just not going to happen. Which is why the house smells like strawberries and vomit.
The real problem is the poo, though. Little O is still training his digestive system on how to process longer protein strands, so he's creating dirty diapers several times a day. But now they're... interesting. They've changed colour so much during the last month or so that I'm still not sure what to do. The initial changes were attributed to a possible C. difficile infection, which was treated with antibiotics, and it did improve things a little. His stomach seemed to hurt less, which was nice, and the frequency of changing him declined a little - we were up to 10 or 12 dirty diapers a day a few weeks ago, and now it's more like three or four. But I'm still not convinced that there isn't something wrong with his tummy.
His poo is currently pink. Yup, pink. Obviously I'm thinking the pink strawberry PediaSure is responsible for this, but I have NEVER SEEN PINK POO BEFORE. It's freaking me out, to be honest. I mean, when he was on certain antibiotics his poo was a bit purple, or a bit orange, but never pink! It's alarming to unwrap a nappy and see that staring you in the face. Oh, and it's not consistently consistent, either. In the early mornings it might be almost as solid as a normal toddler's, but by 9am his 'present' is as runny as water. And they ALWAYS have a really unusual smell. There just doesn't seem to be any progress.
So what do I do? I don't know whether to just keep pumping the PediaSure into him and keep my fingers crossed his body will eventually adapt, or whether to bother the GI clinic AGAIN with my concerns. I hate being that parent and I do my best to solve riddles by myself instead of bothering busy clinics, but until now I've always trusted my instincts and my instincts have always been right.
It's just that right now I'm not sure what my instincts are. Any thoughts?
Tina.
Saturday, June 26, 2010
Continuing my rant, followed by birthday fun
Right. Got a bit sidetracked the other night and forgot to finish my post, so I'll do my best to finish up what I can remember.
I was all angsty after Thursday's SS appointment, and one of the reasons was the fact I was up there for THREE HOURS. I obviously hadn't accounted for this and so I hadn't brought any of Little O's food with me. I'd fed him at 8am that morning, and didn't leave the clinic until 1.30pm, which meant he didn't start his lunch until 2.30pm. He's also developed this incredibly annoying habit of wanting to nap at EXACTLY the wrong moment, so that instead of being hungry and wanting to enjoy some PediaSure (mmm, banana flavour-y), he basically yelled the whole way home until I put him in his crib. I figured I'd just hook up his feeding pump and let him get as much as he could while he was asleep, but Little O is having none of that at the moment and as soon as he starts to feel something entering his tummy, he wakes up again and yells. Yells until he chokes and throws up anything I've just spent the last half an hour trying to put in to him. It's completely maddening, and I just get so frustrated sometimes.
All I ever try to do is keep my son healthy, happy and growing. I do my best to make time for appointments and specialists, but it's infuriating to have to reschedule Little O's life around THEIR office times. It's worse when an appointment takes three sodding hours, Little O won't sleep, and then basically misses an entire feed because he's all out of sorts. I hate other people sometimes. They make our lives very difficult.
Today was a better day. I was utterly exhausted last night (it was Friday, after all, but let's not go down the ol' Spoons route again. I don't have the va va voom for that right now), and started falling asleep on the couch at 6pm. Mike ordered me to bed, and in bed I stayed... until 9.30am this morning. I was so startled when I woke up and the clock said 9.30 but it was light outside. It felt WONDERFUL to get that much sleep and really recharged my batteries. We even had sex to celebrate. :)
Feckin' miracle, that is.
We took Little O to his friend's first birthday party this afternoon at the zoo. She is such an adorable little princess, but that child LOVES to get messy! She had a massive pink giraffe birthday cake, and when she was given a slice she tore in to that thing like she'd never eaten before in her short little life. She was absolutely covered in cake, crumbs, and icing, and I think I wasn't the only one who found it hysterically funny when she pressed her sticky pink hands against her mother's clean white shorts. I'm still chuckling about it now. I got some beautiful shots of Little O and his birthday-girl friend sitting on the grass together, but I think Facebook is as far as they'll be going. Sorry about that. Of course, you can always befriend me on FB and share in Little O's gorgeousness instead.
Tina.
I was all angsty after Thursday's SS appointment, and one of the reasons was the fact I was up there for THREE HOURS. I obviously hadn't accounted for this and so I hadn't brought any of Little O's food with me. I'd fed him at 8am that morning, and didn't leave the clinic until 1.30pm, which meant he didn't start his lunch until 2.30pm. He's also developed this incredibly annoying habit of wanting to nap at EXACTLY the wrong moment, so that instead of being hungry and wanting to enjoy some PediaSure (mmm, banana flavour-y), he basically yelled the whole way home until I put him in his crib. I figured I'd just hook up his feeding pump and let him get as much as he could while he was asleep, but Little O is having none of that at the moment and as soon as he starts to feel something entering his tummy, he wakes up again and yells. Yells until he chokes and throws up anything I've just spent the last half an hour trying to put in to him. It's completely maddening, and I just get so frustrated sometimes.
All I ever try to do is keep my son healthy, happy and growing. I do my best to make time for appointments and specialists, but it's infuriating to have to reschedule Little O's life around THEIR office times. It's worse when an appointment takes three sodding hours, Little O won't sleep, and then basically misses an entire feed because he's all out of sorts. I hate other people sometimes. They make our lives very difficult.
Today was a better day. I was utterly exhausted last night (it was Friday, after all, but let's not go down the ol' Spoons route again. I don't have the va va voom for that right now), and started falling asleep on the couch at 6pm. Mike ordered me to bed, and in bed I stayed... until 9.30am this morning. I was so startled when I woke up and the clock said 9.30 but it was light outside. It felt WONDERFUL to get that much sleep and really recharged my batteries. We even had sex to celebrate. :)
Feckin' miracle, that is.
We took Little O to his friend's first birthday party this afternoon at the zoo. She is such an adorable little princess, but that child LOVES to get messy! She had a massive pink giraffe birthday cake, and when she was given a slice she tore in to that thing like she'd never eaten before in her short little life. She was absolutely covered in cake, crumbs, and icing, and I think I wasn't the only one who found it hysterically funny when she pressed her sticky pink hands against her mother's clean white shorts. I'm still chuckling about it now. I got some beautiful shots of Little O and his birthday-girl friend sitting on the grass together, but I think Facebook is as far as they'll be going. Sorry about that. Of course, you can always befriend me on FB and share in Little O's gorgeousness instead.
Tina.
Thursday, June 24, 2010
And repeat!
This week has been rather lovely for me and Owen because all three of his therapists have gone dun a bunk and he hasn't had any Speech, PT or OT. Which means I haven't had to clean the house in preparation for their visits (because, let's face it: if I didn't HAVE to clean the house, I WOULDN'T clean the house), and we've had some more free time than usual.
However.
Because this is the sixth month of the year, and because I am a diligent, organised parent, a lot of Owen's routine appointments have cropped up and I have chosen to attend them instead of buggering off on holiday for a week or seven. This has meant that two appointments, genetics and Stepping Stones, have occurred back-to-back in the same week. And neither of them are up at CHOW or at my own house, so it's kind of a bitch to get to them and remember how long they're going to take. Anyway, genetics was yesterday and aside from it being a colossal waste of time, it was rather nice to present my son to them and go, "SEE? Isn't he MARVELLOUS?", and for them to go, "Oh yes! What a lovely little boy you have there, and what a REMARKABLE job you're doing with him!" in return. Which is what always happens at these types of appointments. Honestly, I think there must be some real douchebag parents out there, because whenever I see any of Little O's specialists I'm always commended on my parenting skills - particularly my ability to remember which medications he takes, which doctors he sees, dates, times, and past medical history, all without referring to something I've written down.
The trick to remembering it all is quite simple: repeat. Often. At least once a week. Tell every doctor, therapist, nurse, specialist, interested friend, and family members as often as possible, because chances are they won't have remembered a single sodding thing from the last time they saw Little O, and haven't bothered to look at his chart before they entered the room. Trust me, you can get a reputation as an outstanding parent very quickly if you are forced to repeat, repeat, and repeat again your son's medical history every time he sees someone.
The thing is, I'm usually a wreck. Emotionally and physically, I'm a wreck. Because attending appointments means adhering to someone else's schedule, I always arrive looking and feeling completely frazzled. I can't remember the last time I bothered to dry my hair instead of sticking it up in a mess, and as for make-up or checking to see if my clothes are baby-fluid-free ... well ... let's just say they're low on my list of priorities. I turn up at least five minutes early, because to me "on-time" is late, and I have always, always busted a gut to get out of the house with a semi-clean Little O and chewy toys, wipes, diapers, special butt cream, clean t-shirts, clean trousers/shorts, several burp cloths, wallet, diary (planner), phone, car keys, and feeding supplies if they're needed (milk, water, bottles, extension tubing, 60cc syringe, 10ml syringe, bib, sippy cup, semi-solid food, bowl, spoon, plastic baggies, freezer pack, insulated bag). And it always takes me an hour to get to most of our appointments, so I have to shift Little O's feeds around to make sure he's done puking by the time I sit him in his car seat. It isn't fun pulling over on to the hard shoulder to mop him up; oh no, it isn't. Today for example, I was up at 6am just to make sure we arrived at our 10.30am Stepping Stones (SS) clinic appointment on time.
That, quite frankly, is ridiculous.
It's also ridiculous to ask me to add a single sodding thing to my already scheduled-to-death life. The therapists we see at SS all make very helpful suggestions whenever we go, and I'm always pleased to see them, but they make it sound SO simple and they need to know it isn't. Asking me to prepare fresh baby food instead of shop-bought is just not an option right now. I don't have the time to dry my hair, let alone mash some vegetables up! It's completely maddening and today I was kind of at the end of my tether. I sobbed quite a lot this morning before I left the house and I just didn't have the patience to sit through another "helpful suggestion", so I told them quite honestly the things I was, and wasn't, prepared to do. And making fresh food for a child who will not eat anything at all, is so low on my list of priorities that it doesn't even register.
Wait one sec ... this post is nowhere near finished, but Little O has a stinky bottom and the phone's ringing.
To be continued ...
Tina.
However.
Because this is the sixth month of the year, and because I am a diligent, organised parent, a lot of Owen's routine appointments have cropped up and I have chosen to attend them instead of buggering off on holiday for a week or seven. This has meant that two appointments, genetics and Stepping Stones, have occurred back-to-back in the same week. And neither of them are up at CHOW or at my own house, so it's kind of a bitch to get to them and remember how long they're going to take. Anyway, genetics was yesterday and aside from it being a colossal waste of time, it was rather nice to present my son to them and go, "SEE? Isn't he MARVELLOUS?", and for them to go, "Oh yes! What a lovely little boy you have there, and what a REMARKABLE job you're doing with him!" in return. Which is what always happens at these types of appointments. Honestly, I think there must be some real douchebag parents out there, because whenever I see any of Little O's specialists I'm always commended on my parenting skills - particularly my ability to remember which medications he takes, which doctors he sees, dates, times, and past medical history, all without referring to something I've written down.
The trick to remembering it all is quite simple: repeat. Often. At least once a week. Tell every doctor, therapist, nurse, specialist, interested friend, and family members as often as possible, because chances are they won't have remembered a single sodding thing from the last time they saw Little O, and haven't bothered to look at his chart before they entered the room. Trust me, you can get a reputation as an outstanding parent very quickly if you are forced to repeat, repeat, and repeat again your son's medical history every time he sees someone.
The thing is, I'm usually a wreck. Emotionally and physically, I'm a wreck. Because attending appointments means adhering to someone else's schedule, I always arrive looking and feeling completely frazzled. I can't remember the last time I bothered to dry my hair instead of sticking it up in a mess, and as for make-up or checking to see if my clothes are baby-fluid-free ... well ... let's just say they're low on my list of priorities. I turn up at least five minutes early, because to me "on-time" is late, and I have always, always busted a gut to get out of the house with a semi-clean Little O and chewy toys, wipes, diapers, special butt cream, clean t-shirts, clean trousers/shorts, several burp cloths, wallet, diary (planner), phone, car keys, and feeding supplies if they're needed (milk, water, bottles, extension tubing, 60cc syringe, 10ml syringe, bib, sippy cup, semi-solid food, bowl, spoon, plastic baggies, freezer pack, insulated bag). And it always takes me an hour to get to most of our appointments, so I have to shift Little O's feeds around to make sure he's done puking by the time I sit him in his car seat. It isn't fun pulling over on to the hard shoulder to mop him up; oh no, it isn't. Today for example, I was up at 6am just to make sure we arrived at our 10.30am Stepping Stones (SS) clinic appointment on time.
That, quite frankly, is ridiculous.
It's also ridiculous to ask me to add a single sodding thing to my already scheduled-to-death life. The therapists we see at SS all make very helpful suggestions whenever we go, and I'm always pleased to see them, but they make it sound SO simple and they need to know it isn't. Asking me to prepare fresh baby food instead of shop-bought is just not an option right now. I don't have the time to dry my hair, let alone mash some vegetables up! It's completely maddening and today I was kind of at the end of my tether. I sobbed quite a lot this morning before I left the house and I just didn't have the patience to sit through another "helpful suggestion", so I told them quite honestly the things I was, and wasn't, prepared to do. And making fresh food for a child who will not eat anything at all, is so low on my list of priorities that it doesn't even register.
Wait one sec ... this post is nowhere near finished, but Little O has a stinky bottom and the phone's ringing.
To be continued ...
Tina.
Friday, May 28, 2010
Bigger blog
Since Owen's birthday on May 17th, things have been a bit of a whirlwind. He has had a birthday party, some professional photos taken, surgery and a stay in hospital overnight, a change in formula, and a pretty nasty stomach bug.
It's a shame I'm not keen on sharing photos of my son on this annoymous blog, otherwise I'd load up some from his awesome birthday party. It was brilliant. Every child ought to have a first birthday just like it. Mike's family came out to visit for the occasion and I invited about twenty other friends and their small children too. We had a barbeque using our very American gas-powered outdoor grill, which fires up in about three minutes and cooks meat and veggies perfectly - as long as Mike is watching it. We also had a friend make some cheesecakes to use as birthday cakes. Owen can't manage completely solid food yet, so some creamy, delicious goodness seemed like a nice halfway point between proper sponge cake and liquid baby food. It meant we could stick a candle in it too, which for some reason was very important to me. Owen's guests were extremely generous with presents and he received some incredible clothes and toys. Every single thing was obviously thought-about too, because friends of mine know how much I can't stand gendered toys, and that Owen requires clothes that don't interfere with his tube feedings. He received very gender-neutral toys and clothes, and there was nothing I thought we'd have to put away for a bit until he's able to use it. I was also very pleased that people listened to my (polite) request that he be given toys to help his development. Not every toy aimed at one-year-olds is appropriate for my little boy, but there are items out there which will kick-start a new stage in his growth - such as an adorable walking device that babies can either sit on or push in front of them, that we have named Lionel the Lion. It roars. So does Owen.
On his actual birthday, which was a Monday, I took Little O to get some professional photos taken. Out here it is perfectly normal to get photos done ALL THE LIVE LONG DAY. I have friends who took professional shots every month for the first year of their son's life, and others who don't let a national holiday pass without marching in to a photo studio: Easter, Christmas, Valentine's Day; their daughter has a portrait for all of 'em. I, however, prefer to be a cheap-ass mother, and felt that some nice photographs to commemorate the first year in my son's extremely challenging life were more than appropriate. Owen had other plans, of course, and didn't smile for the camera for most of the session. Of the thirty-or-so shots the photographer took, only four or five were nice enough to use. I ordered some for home and family, but it's not something I plan on doing every year. But this year was special.
On the Wednesday of Birthday Week, Owen had surgery to repair his cleft palate and take off that fucking ugly ear tag he's had since he was born. He was a complete trooper during and after his operation, and my mouth fails me when I try to describe how brave and strong he is. His fourth operation in a year, and he's such a superstar. My heart just swells with pride at the strength of his character, and I tell him that every day. He has to wear these ridiculous arm restraints for two weeks so he doesn't suck on his fingers and pop open his stitches - yuk. It's incredibly hot over here at the moment (yesterday it was 82F/28C) and those restraints stink like a son of a bitch with Owen's sweat. Thankfully we have two pairs and I've been able to wash them, but they're still not nice for him to wear in the heat and I haven't been particularly diligent about him wearing them when he's fussy. At the moment he has a horrible stomach bug, and it seems cruel to deny him the comfort of sucking on his fingers or thumb when he's feeling crappy. I've been watching him to make sure he doesn't get too aggressive and potentially harm the surgical site, and so far, so good.
On Monday of this week I took him up to the GI clinic to see if we could change his formula. He's been on Neocate since he was born, which is a hypoallergenic, amino-acid based formula suitable for children who just won't tolerate anything else. After Owen passed his allergy study a couple of weeks ago, his doctors have been keen to move him on to something with higher calories and a cheaper price tag. So now he's on something called Pediasure, which is widely available and comes pre-mixed. Hallelujah! Unfortunately, the night we started weaning him on to it, he came down with a stomach bug and temperature, and hasn't been tolerating feeds of any large volumes at all. I'm just hoping it's the bug and not the formula.
I do feel guilty when Owen gets ill, because I take down the amount of food I give him. When he's ill he throws up more, regardless of whether the bug is respitory or gastrointestinal, so it seems cruel to push as much food as I can in to his stomach, only for him to bring it up violently and with great distress. So I tend to ignore our regular schedule (8am, 12pm, 5pm and overnight starting at 8.30pm) and allow him to sleep as much as he wants to. It does mean though that not only does he miss complete feeds, he doesn't even get a full feed when he does eat. It's that ever-present issue of trying to do what's best for him versus what keeps him happy: balancing his nutritional needs with his comfort. He's so unwell at the moment that he's waking up every ten minutes or so at night (don't even get me started on how exhausted I am after the last two nights), and throwing up his overnight feed, which means he's not getting that full amount either. I feel very guilty when he doesn't gain weight during an illness, but I try and remember that if he were a normal child, fed in a normal way, then he'd probably be refusing to eat anyway. This is a similar thing, I guess.
In a couple of weeks I take Owen in to discuss the results of an immunology study he had done. His doctor called me and requested I bring him in, which scares the bejesus outta me. Apparently some of his 'levels' came back too low, which is a strong indicator of an immune deficiency disorder. Those are pretty scary and something which I know next to nothing about. I just hope it's not so bad he eventually requires a bone marrow transplant, or infusions every month. The more stuff I can manage from home, the better.
Owen qualified for Medicaid! Hurrah! Too dull to explain here, but it means that a lot of our financial problems associated with his care will now be handled by the state of Wisconsin. This is fantastic news and I'm just waiting for him number to arrive in the post so I can call all his healthcare providers and tell them to stick their medical bills up their arse. I will relish every single call.
Tina.
It's a shame I'm not keen on sharing photos of my son on this annoymous blog, otherwise I'd load up some from his awesome birthday party. It was brilliant. Every child ought to have a first birthday just like it. Mike's family came out to visit for the occasion and I invited about twenty other friends and their small children too. We had a barbeque using our very American gas-powered outdoor grill, which fires up in about three minutes and cooks meat and veggies perfectly - as long as Mike is watching it. We also had a friend make some cheesecakes to use as birthday cakes. Owen can't manage completely solid food yet, so some creamy, delicious goodness seemed like a nice halfway point between proper sponge cake and liquid baby food. It meant we could stick a candle in it too, which for some reason was very important to me. Owen's guests were extremely generous with presents and he received some incredible clothes and toys. Every single thing was obviously thought-about too, because friends of mine know how much I can't stand gendered toys, and that Owen requires clothes that don't interfere with his tube feedings. He received very gender-neutral toys and clothes, and there was nothing I thought we'd have to put away for a bit until he's able to use it. I was also very pleased that people listened to my (polite) request that he be given toys to help his development. Not every toy aimed at one-year-olds is appropriate for my little boy, but there are items out there which will kick-start a new stage in his growth - such as an adorable walking device that babies can either sit on or push in front of them, that we have named Lionel the Lion. It roars. So does Owen.
On his actual birthday, which was a Monday, I took Little O to get some professional photos taken. Out here it is perfectly normal to get photos done ALL THE LIVE LONG DAY. I have friends who took professional shots every month for the first year of their son's life, and others who don't let a national holiday pass without marching in to a photo studio: Easter, Christmas, Valentine's Day; their daughter has a portrait for all of 'em. I, however, prefer to be a cheap-ass mother, and felt that some nice photographs to commemorate the first year in my son's extremely challenging life were more than appropriate. Owen had other plans, of course, and didn't smile for the camera for most of the session. Of the thirty-or-so shots the photographer took, only four or five were nice enough to use. I ordered some for home and family, but it's not something I plan on doing every year. But this year was special.
On the Wednesday of Birthday Week, Owen had surgery to repair his cleft palate and take off that fucking ugly ear tag he's had since he was born. He was a complete trooper during and after his operation, and my mouth fails me when I try to describe how brave and strong he is. His fourth operation in a year, and he's such a superstar. My heart just swells with pride at the strength of his character, and I tell him that every day. He has to wear these ridiculous arm restraints for two weeks so he doesn't suck on his fingers and pop open his stitches - yuk. It's incredibly hot over here at the moment (yesterday it was 82F/28C) and those restraints stink like a son of a bitch with Owen's sweat. Thankfully we have two pairs and I've been able to wash them, but they're still not nice for him to wear in the heat and I haven't been particularly diligent about him wearing them when he's fussy. At the moment he has a horrible stomach bug, and it seems cruel to deny him the comfort of sucking on his fingers or thumb when he's feeling crappy. I've been watching him to make sure he doesn't get too aggressive and potentially harm the surgical site, and so far, so good.
On Monday of this week I took him up to the GI clinic to see if we could change his formula. He's been on Neocate since he was born, which is a hypoallergenic, amino-acid based formula suitable for children who just won't tolerate anything else. After Owen passed his allergy study a couple of weeks ago, his doctors have been keen to move him on to something with higher calories and a cheaper price tag. So now he's on something called Pediasure, which is widely available and comes pre-mixed. Hallelujah! Unfortunately, the night we started weaning him on to it, he came down with a stomach bug and temperature, and hasn't been tolerating feeds of any large volumes at all. I'm just hoping it's the bug and not the formula.
I do feel guilty when Owen gets ill, because I take down the amount of food I give him. When he's ill he throws up more, regardless of whether the bug is respitory or gastrointestinal, so it seems cruel to push as much food as I can in to his stomach, only for him to bring it up violently and with great distress. So I tend to ignore our regular schedule (8am, 12pm, 5pm and overnight starting at 8.30pm) and allow him to sleep as much as he wants to. It does mean though that not only does he miss complete feeds, he doesn't even get a full feed when he does eat. It's that ever-present issue of trying to do what's best for him versus what keeps him happy: balancing his nutritional needs with his comfort. He's so unwell at the moment that he's waking up every ten minutes or so at night (don't even get me started on how exhausted I am after the last two nights), and throwing up his overnight feed, which means he's not getting that full amount either. I feel very guilty when he doesn't gain weight during an illness, but I try and remember that if he were a normal child, fed in a normal way, then he'd probably be refusing to eat anyway. This is a similar thing, I guess.
In a couple of weeks I take Owen in to discuss the results of an immunology study he had done. His doctor called me and requested I bring him in, which scares the bejesus outta me. Apparently some of his 'levels' came back too low, which is a strong indicator of an immune deficiency disorder. Those are pretty scary and something which I know next to nothing about. I just hope it's not so bad he eventually requires a bone marrow transplant, or infusions every month. The more stuff I can manage from home, the better.
Owen qualified for Medicaid! Hurrah! Too dull to explain here, but it means that a lot of our financial problems associated with his care will now be handled by the state of Wisconsin. This is fantastic news and I'm just waiting for him number to arrive in the post so I can call all his healthcare providers and tell them to stick their medical bills up their arse. I will relish every single call.
Tina.
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