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.
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