A Tess update

Chris took Tess to the ophthalmologist yesterday and the doctor tried a vision test on her for the first time. Instead of letters her pediatric eye chart had pictures of animals. Apparently it went like this:

“Cat!”

“Cat!”

“Cat!”

“Cat!”

Chris: “I know it looks like she can’t see the dogs, sheep, etc. She might actually be able to see those animals, but it’s hard to tell because she really likes cats and she tends to ignore things she doesn’t like.”

“Dog!”

“Dog!”

“Dog!”

“Dog!”

Chris: “Umm, she really likes dogs too.”

Ophtalmologist, thinking: “These undeveloped humans are very difficult to deal with.” (NOTE: We don’t actually know that he was thinking this, this is an assuption based on his facial expression, body language and harrumphing.)

So it seems that the doctor is pretty happy with her progress, and that we should keep going with what we’re doing. He had absolutely no new solutions for our problem of losing contacts because they are apparently a perfect fit. He apparently said that they probably come out when she rubs her eyes or jumps or runs around. (Chris did NOT say, “Oh, REALLY?”)

I also took Tess for her post-operative follow-up with her pediatric urologist. He said the wound looked fantastic and that she was doing really well. Then he picked up her dictaphone and started dictating a letter to our family doctor: “Tess is doing well following her surgery STOP Discontinue Keflex immediately STOP I will organise a renal ultrasound for February and a follow up MCU a few months after that STOP”

Sadly, this isn’t the first time a medical specialist has communicated very important information to me by dictating a letter to a third party. I’m sure they’re all lovely people BUT WHY WOULD YOU DO THAT? Totally bananas. I then paid him back by getting out out the stack of research papers I’d been reading and the list of 16 questions I had based on my reading. See? I WIN.

Actually, no, Tess wins because she no longer has to take antibiotics every day. Woo-hoo!

A heavy silence

Last week I had a nightmare. Tess was in surgery, we were waiting outside. Suddenly the power went out. We were all ushered out to the parking lot. I could seem them bringing out the gurneys. I could see my daughter, blood everywhere.

I have no idea why my subconscious is torturing me this way. I would like to take my subconcious out for a drink and say, “Look, we both know that some serious shit* is about to go down but that I think the best thing for all is that we don’t discuss it until the moment is upon us and then you can blast away. Until then can we just keep up with the ‘holiday in Paris’ fantasies?’ Of course, my subconcious doesn’t play like that. Neither does it accept breezy assurances such as “it’s fairly routine surgery” and “other children are much sicker than your kid.” Nup, my subconscious doesn’t care about any of that.

Tess has got no idea about what’s going to happen. She’s a blissfully happy girl at the moment, always carrying a soft toy under one arm, lots of spontaneous jumping in delight, suddenly devising new funny walks. Yesterday when we were down at the canal she suddenly started walking like she had a broken leg… backwards. She learns new words every day, and invents new words every other day. She loves cats and finger puppets and stealing her sister’s toys. She knows all the hand movements to “Twinkle Twinkle Little Star” and “Galumph Went The Little Green Frog”. She loves spontaneous cuddling and kissing, giggling so hard it sounds like her chest is going to explode and gleefully breaking stuff.

Tess’s ignorance of the frightening experience that is going to happen next week is a blessing. Her mind is not whirring with all the “what ifs’ and hazy patchwork of previous experiences transposed onto supposition and guessing. Unspoken fears about pain and suffering. You don’t want to belabour or feed these fears by talking about them, but goddammit they’re there. Chris and I are bearing a heavy silence this week.

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*I would never have sworn like this when my Nana was reading my blog. I miss you Nana.

Not keeping on top of things these days

A whole lot of good stuff has been happening lately, and some bad stuff too, but all of it combined means I’ve been a little quiet on the blog lately. It’s not that I don’t love you all, it’s just that life is kicking my ass!

First off, we’re moving. And it is so, so wonderful scheming and planning our new house. But to get to the wonderful we have to go through a whole lot of un-wonderful, like packing boxes at night when the girls have gone to bed, and phoning moving companies on your cellphone when you’re waiting at the bank. Who knew that mortgages would require so much paperwork? Well, I think I did know that, but it’s still annoying. Also, last time we moved I wasn’t working 3 days a week. It’s all pretty much under control…. I think.

But the bad news is that Tess has had two hospital admissions in the last month, with several doctors appointments. We saw her pediatrician on Tuesday and he told us that Tess has renal scarring on her left kidney. Which isn’t good. He has referred us to a pediatric urologist, who will probably recommend surgery. The difficult thing is that surgery is controversal. I did a bunch of research myself and there are a whole legion of urologist who don’t think UTIs or VUR cause renal scarring. Consequently, we’ll probably ask for some second opinions to hear both sides of the argument. Her pediatrician agreed that it would be reasonable to do so, but he also cautioned that he thought most urologists would recommend surgery for Tess because her case is so bad. We’re handling this all in a pretty matter-of-fact way. Just one foot in front of the other. One day at a time. Making the best decisions for Tess that we can. Not stressing about things we can’t change.

There’s been an awful lot of smelling the roses, too. The last 3 days have seen Tess really take off with her walking. Today she was staggering around in the shopping centre with one eye patched and her arms in splints. She’s really gaining her confidence! And she’s so cute, staggering around like a drunken sailor.  I’ve got a few videos on my camera, I’ll try to upload them soon.

And she did her first painting! She came home with it from day care. So adorable.

Rose has been both wonderful and a little monster lately. She’s decided that she doesn’t want a daytime nap any longer. Which is okay, except she gets absolutely shattered by 5pm and starts crying hysterically and making difficult and conflicting demands. She had a lovely time with her Granny Anne recently when she came to visit. She really enjoyed the one-on-one attention. Granny and Rose did lots of special things like going to cafes and drinking fizzy water and eating cupcakes. Granny picked her up from day care early one day and they went to the park. It was just magical.

We also all went to Fairfield City Farm on the weekend. Rose had a ball feeding the goats and the kangaroos. Such a special mothers day.

There are a whole lot of other photos – just click through to flickr.

Hospital visit

Just got back from hospital with Tess. All went well. The procedure was very minor – Tess’s ophtalmologist really just needed to examine her eyes properly – and being a feisty toddler he needed an anaesthic to do it. Tess took it all pretty well. She was given some sort of short-acting happy meds before she was wheeled into the theatre and she went from being hungry, cranky and annoyed (she had to fast and so didn’t get any breakfast) to smiley and wobbly. She found everything delightful and hilarious, until the anaesthetist put the gas mask over her head, and she rapidly turned into a drunk who’d lost one too many bets. Then she went to sleep.

I only had to wait 15 minutes in the waiting room, and it was all over. I could tell that she’d woken up because I could HEAR HER SCREAMING FROM NEXT DOOR. Apparently they only used gas (not a proper general anaesthetic), which makes children really upset. Poor Tess couldn’t be consoled for the next 40 minutes – she just kept arching her back and screaming.

Doc says her eyes look good and that the prescription has changed to +20 or +19, which is 10 diopters different to her current prescription! He’s contacting the optometrist with her new script, and hopefully we’ll get that in a week.

Tess goes back to hospital on the 4th May for a nuclear scan of her kidneys. We’re all starting to get very familiar with the hospital. I used to get upset about the cheery decor (case in point: I noticed a giant fried egg on the side of a building today) and the attempts at rallying the spirits of sick kids. Where once I saw poignance, which led me to sadness, I now smile. I guess it’s working.

Patching torture

We have been going through a lot of pain and anguish lately about Tess’s patching. About two weeks ago Tess had a review with her ophalmologist, who said that her prescription had probably changed dramatically, probably down +5 or so diopters to +25 (she’s currently +30). Most of this is due to the fact that her eye is growing, rather than her sight improving. But still, good news. He said he couldn’t be sure because she’s so mobile these days. He said he would need to examine her under anathestic, at the children’s hospital. The appointment we have for that admission is on the 19th April.

But the bad news, and the thing we’ve all been struggling with, is the fact that it’s obvious that she can’t really see while she’s being patched because she’s still wearing the +30 lenses. Your average person with poor eyesight usually has lenses of about +2 -+5, and if you’ve ever put a poor-sighted persons glasses on you’ll get a sense of what Tess is seeing while patched. Horribly blurring and swimming images, and instant headaches. This isn’t just supposition. I’ve observed her banging into walls and other objects. And her mood. When the patch is on she cries all the time. Sad, angry, lonely, frustrated cries. She swings her arms around, flailing. In the last few days she’s started biting us, and worst of all, herself. She’s so upset that’s she’s biting herself.

I knew that patching time was starting to make me feel really stressed. I knew that on my work days I would mentally sigh with the relief that I wouldn’t have to face the reality of my daughter’s distress for hours. But today, when Chris took Tess to the emergency room of the hospital because her eye was red and inflamed, and they told us it probably wasn’t serious but we should not put her contact in for a few days and no patching, I felt my body deflate and relax in a way that made me realise how tense I’d been.

Tomorrow is a great day. Tomorrow we don’t torture our daughter.

Sickness

Okay, so seconds after I hit send on the last post and was about to lie down for a nap, Chris arrived home with Tess who had been expelled from day care for having Hand Foot and Mouth. Right. It makes sense that the medieval diseases would start around about now because haven’t we worked our way through the rest? We took her to the doctor, and she doesn’t have Hand Foot and Mouth. Hurrah! She has something called molluscum contagiosum, apparently an infectious skin condition that will last up to a year. Yep, a year. Fortunately our only instructions are not to bathe together.

But the Hand Foot and Mouth threat hasn’t left our household yet. Rose came home from day care today crying from having “a stinging mouth”. I looked inside and saw a few ulcers – one of the dead giveaway signs of Hand Foot and Mouth. But who knows? If you don’t hear from us for a while it’s because we’ve all contracted the plague.

State of Play

So, where to start? Tess came down with a gastro flu on Friday night, which was pretty scarey for about 5 hours when she vomiting non-stop, but didn’t turn out to be too bad. She was better by Saturday, but still tired and cranky; by Sunday she was completely revived. Then Chris came down with it on Saturday, he looked very ill indeed. And then Rose came down sick with it on Sunday night, vomiting from about 9pm until 2.30am! I kinda knew all this would be starting with Tess going to day care (children get really sick when they start any kind of childcare because they don’t have immunity to all the bugs that adults have), but gastro has to be the worst.

It’s also bookended a very challenging 3 weeks for us. What with Tess being in hospital, needing follow-up appointments with doctors and ultrasounds and so forth, and my work really heating up now that students are returning, we’re all feeling in need of a holiday. Also, Tess has had a tough time adjusting to day care. She was okayish the first few days (although when I called to check on her they said that she was crying on and off), but the third day was pretty bad. I guess she knew what was coming. They called at about midday to say that she was crying, wouldn’t take a bottle, and wouldn’t sleep, and they wondered what we wanted them to do. Chris went and got her. Fortunately the fourth day was much better, mainly due to my Dad staying with us and spending an hour with her in the morning at day care after drop-off. We’ve been doing shorter days  thinking that would be helpful, but we’ve come around to the realisation that it’s better for us to go and spend time with her there. The centre assured us that it was all very normal for kids starting day care, but we can’t help but feel that Tess’s adjustment issues also result from her recent hospital stay. While we were in hospital she cried whenever a nurse came in and she’s generally become fearful of strangers. She is, however, very resiliant and has adjusted really well to a lot of tough situations.

One exciting development is that she’s started walking around with a little trolley! She’s been cruising for ages now (walking around furniture), but this is the first time she’s used an object to “walk”. Her balance is very wobbly, but once that’s improved she’ll be walking in no time.

She had a follow-up with her new pediatrician last week (why we ditched her previous pediatrician is a long story, but it involves him losing her file. And the realisation that we’re going to be spending a lot of time at Sydney Children’s possible and it would be useful to have all our doctors associated with the same hospital.) He was pretty frank about the fact that she has a bad case of renal reflux, and that given she’s had a breakthrough infection she’s a good candidate for surgery. But on the other hand, the ultrasound showed her kidneys are growing appropriately and there aren’t signs of scarring yet. The nuclear scan she has in 3 months will be a better judge of the state of kidneys, though, and after that she’ll be referred to a pediatric urologist for assessment. He also explained that surgery in small children for VUR is not a universally accepted path. There are different opinions on what to do. I really like the way our new doctor goes into all of that. I can handle that complexity. Anyway, we’re on a more stable footing now, ready to handle each thing as it comes along, but we have to very vigilant about signs of infection and if her temp goes up high and she’s vomiting, she has to go to hosptial quickly.

There’s probably hundreds of other things to write about but I’m losing steam. I’ll leave you with a photo of Tess and her grandad. And a link to a short video of Rose dancing at Mardi Gras Fair Day.

Suffer little children

Tess came home from hospital on Monday, and we’re so glad to have her back home. She’s doing a lot better in that she doesn’t have a temperature any longer, her colour has come back, and so has her personality. In hosptial she was just so sick, either crying or asleep. The bummer is that she seems to have picked up a bit of a respiratory infection as well, so I took her to her GP today to get her checked out, and she was fine. But we’ve still got a lot to deal with. Because she got such a bad infection (which was a UTI, but probably involved a kidney infection as well) she has to have a lot of follow up tests as well. She has a renal ultrasound next week, a follow up with a pediatrician the week after, a few weeks after that a nuclear scan of her kidney to check for signs of scarring.

Why did she got a UTI in the first place, as she’s been taking a daily dose of antibiotics to treat the renal reflux she was diagnosed with at 5 months old? Well it turns out that she got a bug that was resitant to the bactrim she was taking. The disquieting thing is that the new antibiotic she’s on also has strain-resistant bugs, and there’s further possibilities she’ll have other infections. The reason why they’re sending her for further tests is to check whether there’s permanent damage to her kidneys and to check to see whether her condition is serious enough for surgery. Needlesstosay, we’re all hoping for the best?

But actually the hard thing right now is the patching therapy for her eye. We missed one day hospital because Tess was really ill (ie. not really awake) but the rest of the time we tried to keep up with the patching. But she is HATING it and fighting it. She screams whenever the patch is on, rips it off, and keeps ripping off replacement patches until her face is bleeding. We’ve been using pediatric arm restraints when desperate and she also hates these and screams. I’m not sure why she’s fighting it so much, but my guess is that it has something to do with the hospital visit, the difficult time she went through having IVs and all sorts of tests done. Whatever the reason it’s very stressful and feels traumatising for us and her. In short, it sucks right now, but we’re trying our best to be strong and help Tessa get through this difficult time.

A Catch-up with pictures

I just uploaded a few new photos and realise I’ve only mention about 0.5% of what’s been going on lately. Here’s a pictorial run-down:

We bought a new (for us) table and chairs off ebay. It’s been fantastic having a large table to eat around and prepare food on. Family meals have been so wonderful lately, and with a full house tomorrow it’ll be great to be able to have a sit-down meal. The sad thing is that when Chris went around to pick the table up the owner’s daughter said, “NO! Why is that man taking our table?” Apparently they were moving to Melbourne, rather that being hard up. This is a picture of our first meal around the new table.

Granny Jo has arrived for a 10-day stay over Christmas. She’s been especially enjoying seeing how much Tess has grown. Such a big little girl these days! And she’s no longer wearing glasses. That’s because she had a check up last week at her ophthalmologist, and her eye has changed and needs a weaker prescription. She still needs the contact lens, though. The great news is that the doctor thought Tess was seeing better and that her eye was “fixing” on objects well. Hurrah!

Tess has also been sleeping really badly lately. Ever since she learned to stand up in the cot, it’s all she’s been doing. Daytime naps are not so bad. But at night time it’s sometimes taking an hour or two of going back in a laying her back down to get her to sleep. We’ve also had some atrocious nights with her waking up and not going back to sleep. We’re all doing the best we can as we get through this rough patch.

It’s also been really hot lately. And hot days call for….. nudity! (and grumpiness?)

Fortunately a cooler day (24oC) is forcasted for Christmas Day so we won’t be all swealtering with the heat of the stove being on all morning.

There’s a lot of other things to mention that I don’t have photos for, such as Andy and Charlotte’s visit with us a few weeks back. And Granny Anne’s visit last week. The kids have been enjoying all the visitors and the special attention they’ve received!

Also, Rose has been becoming more and more inventive every day. She’s starting speaking in made-up languages, and inventing all sorts of creatures. Her favourite inventions are “logidolls” and “longyongs”. Both Tess and Rose are logidolls and longyongs, and they are the only two. Also, logidolls are known for their capacity to fly around.

Pediatric checkup for Tess

We took Tess to see her pediatrician on Wednesday for a check up. She’s not due for a full check up until she’s 12 months, but we had a few issues we wanted to ask him about. We told him that her eye is doing really well, that Dr Kennedy thinks she’s gained some sight, and showed him that she was now wearing glasses. He thought all of that was fine. I wanted to ask him about the fact that Tess isn’t crawling yet, and in his own inimitable style he said, “I’m not worried about that.” He quizzed us about why we were worried. I told him that she’s very passive when being patched (and the patch is on for half the day now), and I wondered whether being patched might slow her physical development. He said, “Why would it?” (As you might recall, his bedside manner has been a point of consternation at other points). I also asked about whether her being premature might have an impact. He wouldn’t say. All he would say was that she’s strong enough to crawl, she’s doing everything she should be doing before crawling (sitting unassisted, standing assisted, reaching and grasping objects, rolling, etc) and that she’ll crawl when she crawls.

Okay, I get it. I’m a bit of a Type A mother. I either need to get a Type A pediatrician or accept that Dr G doesn’t believe it getting worked up about things that don’t exist. (But as you all know, worrying about something that doctors told me not to worry about was actually a GOOD thing when it came to Tess’s eye. So henceforth worrying is a good thing, right? Okay, I’m being a little facetious.) I guess I’m resolved to sticking with Dr G because my midwife friend Tara said he’s the best in town, that when something serious is happening he’s really quick to respond. And he is actually a caring person (he called every few days when Tess had surgery and didn’t bill us for multiple appointments etc.), it’s just I have to look past the personality and through to the scientist.

We also asked him about the nuclear scan of her kidneys that he told us last time Tess had to have. (She has VUR, or rental reflux.) He said he’d check his notes and get back to us. Harrumph.