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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.

Owen is one!

Just a quickie: Owen turned one today!


Really, really happy and I'll update more later this week.  He has surgery and some other stuff, so there will be plenty to write about...


Tina.

Ten. TEN!!

As I was brushing Owen's teeth last night, I thought I saw a flash of white in the corner of his mouth.  Concerned he'd tried to eat something he shouldn't have, I explored his mouth with a finger and found not one... not two... not even three... but FOUR teeth I didn't know he had!  That brings his total to ten.  I cannot believe my child has managed to grow four more teeth that I was completely unaware of.  And this comes from someone who brushes his teeth twice a day and tries desperately to shove food in to his gob another three.  TEN!  I was impressed last week with six.  Now I'm close to passing out...

Mother's Day in America was yesterday, which was kinda cool.  In keeping with last year's pre-baby/motherhood theme, Owen (Mike, ahem) bought me new bedding.  Last year was some glorious stuff for our main bedroom and this year it was a new quilt set for the guest room we've just finished redecorating.  I also got a fancy schmancy breakfast cooked for me and some flowers.  The breakfast gave both me and Mike mild food poisoning overnight, but it was worth it.  Hahaha.

I've also discovered I really enjoying mowing the lawn.  That's not in the least bit interesting, I do realise, but there's something very calming about sticking on some headphones and just getting on with it.  Plus we share some lawn at the front with two neighbours, and there's an immense satisfaction about having a neater lawn than them, even if it's only for 24 hours.

I had a really long list of stuff I wanted to write about in my head earlier and now I've forgotten nearly everything.  Ho hum.

Tina.

Seattle and other stuff

Since I last updated, Owen and I took a short break to Seattle to see some friends who moved out there last year.  I was pregnant when they moved so they've never met Owen, and it was really nice to travel out there and do some catching-up.  They have a two-year-old who is completely off the wall, and it was hilarious watching her interact with Owen, wondering on earth they were making of each other.

I'm pretty impressed with myself for managing this trip alone to be honest, as there was a four hour flight out there, and (once you calculate in all the frickin' delays and shit) an even longer one home.  And not only that, but on the Wednesday before we left Owen woke up with a cough, which slowly became an absolutely horrendous sinus infection, complete with five minute cycles in the middle of the night of falling asleep, coughing, waking up and then throwing up.  I'm not kidding or exaggerating - every.  single.  five.  minutes.  We left home Thursday morning after me seriously considering not going, and that night was possibly one of the worst I've ever endured with my son.  The last time things were so bad was in September, when he was not only recoving from hernia surgery, but also had pneumonia AND a 48-hour EEG monitor stuck to his head.  Yup, that was pretty bad, but at least Mike and I were in it together and we were in our own home.  This time I was by myself in someone else's flat.  I felt absolutely miserable and exhausted the next day, which really put a dampner on the entire trip.  He did improve slightly over the next few days, but he was still very poorly on Sunday during the flight home, so Mike took Monday off work to help me get some rest and to take Owen to the doctor.  You know things are bad when Mike takes time off work.

Little O is now responding to antibiotics and seems basically back to himself again, other than being a bit more sleepy and cuddly than usual - which I am in no way complaining about!  He's back on the nebulizer for a bit and the antibiotics are making his poo purple, but other than that things are getting back to normal.

I'm so glad I went to Seattle, even if it was incredibly tiring.  Now I can REALLY put up an argument when people humm and harr about flying with small children.  Get over it!  Heavens; if I can fly solo across a continent with a very poorly, tube-fed, refluxing 11-month-old, then you can fly with your very normal, healthy child, fully supported by a spouse! 

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But Seattle was nice!

Tina.

What was the point of that then?

After yesterday's debacle, I was sorta expecting an improvement in today's activites.  Well, things didn't go quite as badly as Monday, but one majorly stoopid thing did.

We're up at CHOW at least once a month, and sometimes more than once a week.  Well, even though I officially hate the drive up there after my speeding ticket yesterday (AND that bastard cop was waiting in exactly the same spot today in the other direction, catching us 'criminals' while we ferry our little darlings to and from the hospital), I had to do it again today for a Gastric Emptying Study.  (It's not a proper noun, but I feel it adds gravitas, don't you?)

The point of a GES is to observe how the stomach and digestive tract responds to food, and how long it takes said food to move through a child's system until there is no trace of it left in the stomach.  Usually this takes about 90 minutes.  So, we arrived at 11am as instructed, after skipping Owen's breakfast to ensure his stomach was empty.  Most children would be extremely put out about skipping a meal, but Owen quite frankly couldn't have cared less - in fact, his mood was better than usual because he hadn't spent several hours blowing chunks.  Anyway, we started the test after a fairly lengthy discussion as to how much food to put in to O's stomach, at what rate, and what they'd be looking for during the study.  They wanted to put in as much as he normally gets in an hour over five minutes, but I had to point out that if you put in that much in anything less than one hour, Owen WILL throw up.  So the technician suggested half.  I suggested a quarter.  We settled on one third.

She pushed one third of his food (about 60ml) in to his g-tube over seven minutes, during which time we discussed how the test would conclude.  Either Owen wouldn't reflux at all and would lie perfectly still for 90 minutes while the scan followed some radioactive material through his stomach, or he would throw up everything she'd just pushed in and the test would be over.

Natually, my son did just that.  About twenty seconds after she'd clamped his g-tube closed, he spurted a fountain of formula all over his chest, and the test was over.

So, I wasted two 40 minute drives and a half hour in a radiology lab for the technician to tell me that Owen had failed the test.  I'll say!  She couldn't even get the equipment up and running before that child threw up!  Failure is always an option in our household.

I did TELL her he'd throw up.  She really should have listened.

Tina.

Oh. My. Good. God.

First off, I couldn't weigh myself this morning because before I could, the toilet overflowed.

Mike gets up earlier than me (at 5am, which is plainly ridiculous), and this morning he took the opportunity a dark, quiet house offered him and spent some time on the toilet doing whatever it is men do in there for sooooo long.  After he left (5.30am: still ridiculous), I slept for another hour or so, then got up at 7am to start my day.  I went in to the bathroom, lifted the lid of the toilet, and noticed that Mike either hadn't flushed when he'd finished, or our toilet was clogged.  So, because it was 7am and I'm not at my most coherent at that time of the morning, I decided to give it another flush to *ahem* help things along.

Oh.  My.  Good.  God.

The toilet literally vomited out its entire contents on to the bathroom floor, including everything Mike had deposited there earlier.  I think I screamed, or whimpered, or did something fairly sissy-ish, and then grabbed some old towels and literally threw them on the floor, thinking this would somehow help.  It did not.  To use the term "chunky water" is not something I do light-heartedly, but I feel it's appropriate in this instance.  It was brown, yellow and had dark chunks of godawfulness floating in it.  I then jumped over the towels on to a dry patch and chucked down the pan some de-clogging gel we have in the cupboard, shut the door and scarpered.  This, my dear friends, is MIKE'S FAULT, and I am fully prepared to sacrifice some towels and bathmats if it means I don't have to *literally* clean up my husband's shit.

I did tell him about it though.  I didn't let him discover it for himself at a later time.  That would have just been cruel.

So, after this incident at 7am, I realised I was running late.  Owen had to up, changed and eating by 8am, and I had to have the house clean, myself dressed and him done with refluxing by 10am because the Occupational Therapist was coming over for an assessment.  I think Owen knew how stressed I already was, because halfway through his feed he took supreme pleasure in doing one of the largest dumps he's ever done, and it exploded out of his nappy on to his back, legs, highchair, blankets and, once I got him on to the floor to change him, the carpet, his hands and some of me.

Oh.  My.  Good.  God.

I got him cleaned up, met with the OT, fed Owen again and made it to CHOW with about ten minutes to spare.  Met with his Craniofacial doctor (the one we don't like) and his fabulously glam new nurse (whom we do), and left CHOW feeling much more upbeat.  So upbeat, in fact, I turned up the stereo and put my foot down on the motorway.  The speed limit went down to 55mph at one point due to road works, so I natually slowed down a little bit, then when it changed back to 65mph, I sped up to 73mph.  This is the speed I normally do on the motorway, and as I'm constantly being overtaken my other vehicles doing in excess of 80mph, I think nothing of it.  Today, this was not the case.

Oh.  My.  Good.  God.

Not ONLY did I get my first ever speeding ticket, but because I sped up to 73mph coming out of a 55mph work zone, my fine was doubled..  DOUBLED!!  I have gone from having a clean, perfect driving record to points on my licence and a $236 fine.  I was gobsmacked.  Well behaved in front of the police officer, but gobsmacked.  And I'm too ashamed to tell Mike.  I may have seen his shit, but telling him I have a speeding ticket is cheek-burning embarrasing because I'm always crowing my superior driving skills at him.

After all this nonsense I decided to call my sister in the UK to find out about her weekend under some Icelandic volcanic ash, and whether or not she made it to her friend's wedding out in Ireland, but our sodding phones kept disconnecting and I only got as far as Owen's blowout.  This is too bad, because I really, really, REALLY need to vent.

They say things come in threes, but my day has already had so much crap in it (literally!), that I'm just expecting more of the same later on.  What a disasterous Monday.

Tina.

My Feminist High Horse

Weight: ??

Who gives a toss?  It was Easter weekend!  Nom nom nom nom...

On to some more interesting stuff.  There was a very interesting article on The F Word last week called Fertile Feminism, all about being both a mother and a feminist.  It raises issues such as finding yourself excluded from demonstrations because they are un-child-friendly, or ending up being a stay-at-home parent (read: Mother) because someone's career had to give, and your's was the lesser-paid of the two.  Hmm.  I think I've felt that somewhere before...

Once again, let me say: I KNOW I am extremely fortunate to be able to stay at home with my son every day and watch him grow up.  I acknowledge that there must be millions of parents who want to have exactly what I have.  HOWEVER... the reality of raising him myself 80% of the time is something quite different to the rose-tinted image working parents have of staying at home. My life is basically all about nappies, sleep, appointments and the dreaded, ugly, frustrating feeds.  Yes, Owen makes me laugh, and yes, I love to watch him learn something new (currently it's bouncing in his exer-saucer... he's had it for the last six months and only just figured out the thing can mooooove), but at some point, every single flipping day for the last ten months, I have had a meltdown.  Usually it's crying, but it might also be some mild violence (doors are good for slamming and cushions just deserve to be thumped), or even me just putting my screaming baby in his cot and walking into another room for ten minutes to get a grip.  In short: staying at home for me every day has never been a choice; it's never felt like a choice; and I resent the "choice" my partner gets to make in my place.

Because I was made redundant when I was six months pregnant (once again: WHO DOES THAT?) and I wanted to pursue a different career anyway, it seemed logical that it should be my responsibility to take care of our child when he arrived.  Well, ten months down the line and nothing has changed.  Okay, my third book is being published at the end of the year, and I've been able to make a limited means doing something I enjoy, but essentially my career was over before it even began.  I've been trying to figure out how to get a part-time job in retail, but as Mike would have to look after Owen while I'm out, the only real hours I have free are evenings/nights and weekends, which mean I'd either get no sleep or have no free time with Mike.  Or both.  So once again, I am unable to bring in any sort of meaningful contribution to the household finances and I cannot tell you how much I HATE THAT.

I wish Owen were healthier for so many, many reasons.  I mourn the loss of the Owen I didn't get to know: the one who developed normally and is already starting to toddle around.  My Owen, my beautiful, sweet, stubborn Owen, has so many struggles and set-backs and yet he has the kindest, nicest temperament of any baby I currently know.  He only cries when he's very tired or if he's refluxing, and the rest of the time he's all smiles and cuddles and wriggly-bottoms.  I just wish that this lovely little boy were around all the time, because I know that in forty minutes I have to feed him again, and out will come the confused, in-pain baby I have to force to eat.  It's torture for both of us.  I wish he were healthier so he could enjoy his food and spend more time learning how to crawl, or stand, or play with blocks like other babies.  I also wish he were healthier so he didn't have to have his fourth surgery two days after his first birthday, and his fifth a month after that.  I wish he didn't have to adhere to such a tight schedule and he could just tell me when he was hungry, and again when he was full.  And I also wish he were healthier so I could let him play at a daycare centre once in a while and I could work.

I try so hard not to wish for things I cannot have, because it doesn't help me and it certainly doesn't help Owen, but...

I still do.

Tina.