Our (not so) secret plan

We're going to have another baby!  Well, not RIGHT now, but at some point before this year is up we're going to start trying to have another child.

We love Owen, and one of the reasons we've reached this decision is to benefit him.  He doesn't attend a nursery or day care centre, so the amount of interaction he has with other children who are of the same age as him is very limited.  It would therefore be lovely if we could provide him with a playmate, and, given Owen's developmental delays, the differences between their ages would be extremely small.  We also feel that each child would benefit dramatically from having a sibling so developmentally different from themselves.  After all, my younger sister is extremely delayed, but Anthea and I have nothing but good things to say about our experiences growing up with her.  She has also benefitted from having us 'normal' siblings around: you can tell she loves us and remembers us each time we see her.

For a very long time, Mike was prepared to have another baby and I said a definite 'no'.  I was (and to some extent, still am) extremely nervous about taking care of two small children by myself during the day.  Owen's feedings have been so traumatic for me that the thought of mopping up sick with one hand and breastfeeding a newborn in the other just made me break out in a cold sweat.  Owen also has so many appointments that my concerns about spending adequate time with each child, and just being able to MAKE all those appointments, has seemed very daunting.  My mental health has already suffered in the past year; what's to say it won't spiral even further out of control with the responsibility of another baby?

Well... in the last month or so, life has started to slowly, slowly... creepingly... improve.  We changed Owen's formula recently and his feeds have not only been more successful, they've also been quicker.  It has meant I have more time to devote to playing with him, doing my own work, and taking care of jobs around the house.  Also, now he's turned one, his appointments are starting to ease off a little.  He's had as many surgeries as doctors initially anticipated he would when he was born, which means that although we still need to attend yearly appointments, things won't be on the same scale as they have been over the last twelve months.  It's true that we have to start dental care visits, and some appointments won't ease off at all, but Owen's body has responded so incredibly well to a growing and healing heart, eyes, head, and brain, that most of the specialists we see are already scaling things back.  These changes have been so small, so incremental, that to anyone else they're barely visible, but to ME, they're the difference between health and misery.

For the last six weeks I've been seeing another therapist, and Mike and Owen attended a session with me last week.  I feel very good about this course of therapy, as she really listens to what I want, and allows that input to guide my treatment.  For example, I think deep-breathing and listening to whale music will do jack, and I smirk loudly whenever people talk about it.  Reading a book she's lent me called Coping with Infinite Loss and Grief, however, allows me to analyse my thoughts and behaviour from an analytical standpoint - which is much more up my alley.  I also love the fact she has evening hours.  It makes such a difference to not have to bring Owen along, and to return to him fresh and allieved of dark thoughts, just in time to put him to bed.

So, the upshot of all this is that I have an appointment to get my last shot of Depo Provera tomorrow, and that will be it.  It will wear off in September, and Mike and I will allow nature to take its course from that point on.  Apparently the hormones in Depo can take several months to wear off, so I'm not anticipating a baby arriving next May, but it's kind of nice to have a timeframe in mind.  Maybe by Christmas I'll have some good news.

Tina.

Snow, kitchen and nails

It's snowing.  Again.  It looks pretty, but it's a bastard to drive in.  And this is the first year we've had to shovel our own driveway clear of it, which is only slightly less extruciating than digging your car out of the two feet of drift the snow plough just pushed up against it in the apartment building car park.  While pregnant.  And it's -30F.  And there's been an ice storm, which has stuck said ice to your windscreen an inch thick.  And no-one sells de-icer, so you have to scrape it off in two minute bursts, broken up only by warming yourself up in your car for another ten.

Ah yes.  The famous Wisconsin winters.  At least this year I don't have to wake up two hours early to get the car prepared to leave for work on time, and thanks to my insistence on purchasing a house with an attached double garage, I never have to scrape my car again.  I do, however, have to think about Owen and whether valet parking at Children's Hospital is truly a lazy girl's game or a stroke of genius.

Speaking of CHOW (I love that acronym), I took the babba up there today for his CT exam.  He was a perfect angel and slept all the waaaaaay... until they switched on the machine and strapped his head and arms down.  Apparently that's not very comfortable compared to my left shoulder, and he let us all know about it.  He screamed so much they've had to postpone the test until Friday, when he can be sedated.  So, what should have been a half hour scan has now turned into a full day in the surgery clinic.  Naughty baby, but I can't blame him for being scared.

In other news: our kitchen is being installed tomorrow!  Yaaaaay!!  Cannot.  Bleedin'.  Wait.  I HATE our old kitchen and I said when we moved in that other than Owen's nursery, the kitchen was the first room I was going to work on.  It's just such an eyesore, which its orange (ORANGE!!) cabinets, ivy print wallpaper and fake wood laminate countertops.  Eugh.  At least from tomorrow we'll have beautiful cupboards, even if we have to wait a bit longer for the sink and countertops to arrive.  In the meantime I consider ourselves very lucky to have a downstairs bathroom to wash Owen's stuff in.

And finally:  I must be getting a bit stressed at the moment because I've had to resort to painting my nails with Stop 'n' Grow for the first time since I was sixteen.  I'm so ashamed. 

Tina.

So tired... so very, very tired...

Well, it seems as though life is out to bite me in my abundantly-sized buttocks, because we've had some more bad news about Owen's eyes and brain.

Ok, so here goes:

Owen's eyesight is actually okay. He's long-sighted but apparently that's common at this age and he'll outgrow it. No, the problem is a little more difficult than that. Firstly, his eyes only open a tiny amount because the muscles in his eyelids are underdeveloped. He's now learnt to compensate for this by tipping his chin up, which is very bad for his neck, back and shoulders, and if we don't sort out his eyelids he may develop a permanent disability because of it. He needs corrective surgery between now and May to insert silicone tubing into the upper eyelids to strengthen them and help open the eye up further.

In addition to this, the doctor carried out a refraction on his pupils and found something very, very scary. The optic nerves in both his eyes are so inflamed that if we ignore the problem it could become an emergency. Owen's skull is fusing prematurely, which means it has essentially stopped growing and expanding. His brain seems to still want to expand though, which is putting an extraordinary amount of pressure on the skull and the backs of his eyes (hence the inflamation of the optic nerves). Now, normally I would just sigh and think, "Oh, yet another hurdle to get over", but today the doctor frightened me by the stress and importance she was putting on his condition. She seemed frightened herself.

Owen will almost definitely need surgery to open up the spaces in the skull he's supposed to still have, but he may also need a shunt put in to the brain cavity itself to drain excess fluid and relieve pressure in between surgeries (he will need several over the course of his life, until his head is adult-szed). If we do nothing and the pressure continues to grow he could either lose his sight, experience brain damage, or in some severe cases, even lose his life.


So it was not a pleasant way to spend my morning and I got very upset about everything.  This poor little boy is experiencing headaches as a result of all this, which makes me want to just pull him into my arms and cuddle him very tightly forever.  I'm not even sure I'm allowed to give him any pain relievers as they don't routinely recommend giving them if there's no cause.  Sigh.  What on earth am I supposed to do?

Thankfully we have managed to get his CT scan moved up a week, so if they find anything on Tuesday that's serious enough to need action immediately, we'll be ahead a week.  Today I've been making phone calls left, right and centre to push appointments up, get reports faxed to new specialists and generally try to make life easier for Owen sooner.  I think it's going to be a bumpy road, folks...

Oh, and I think I'm anaemic again.  Booooooooo.


Tina.