driving me crazy

It's been awhile since the last post. But honestly, I've been so tired. So down in the dumps, just so damned exhausted. Taryn's been pushing every button she can. Wilfully defiant behaviour. I've just got to find something positive about this stage, and soon, 'cos she's driving me crazy.

Does it never end?

Day before yesterday Jess began antibiotics for her double ear infection and tonsillitis. She got a fine rash, which she's had before, and often gets with any virus she picks up. Her cheeks were red, but we put that down to the fever and ear infections. That night she snored whilst sleeping, which she doesn't normally do. The next day her red cheeks had progressed to bright red stripes across her face and her face was swollen.

Hmmm, off to check the side affects of the antibiotics. "...if patient is swollen, has trouble breathing, rash...see doctor immediately" Well damn! It's sunday, there isn't any after hours care in our area, so off to the Childrens' Hospital ER dept Jo and Jess went. 5hrs later they returned home. Yes, Jess is allergic to penicillin. Damn, damn, damn!

Oh, and they checked her ears and throat. You'll never believe this, but her ears are fine and her throat is fine! Turns out the high fever caused it all. So, not only is she allergic to penicillin, she didn't even need it in the first place. ARGHH!

She Can't Talk Well, But She Sure Can Draw

Having mentioned Jess's numerous health problems and language delays, I thought I'd better show off something that Jess is amazing at. She can draw amazingly well for a 3yr old. She drew her first recognisable face at 2, and has since been adding more and more body parts. She's now up to eyes, nose, mouth, ears, hair, eyebrows, pupils in the eyes, nostrils, hands and feet!

These were done this morning - all unprompted.

A Rainbow
Balloons
Don't you just love the reflection mark in the top right of the biggest balloon?
A Clown
Jess has very carefully drawn eyes with pupils and eyebrows. She's added ears, and those two dots are cheeks. The two sticks coming off the bottom are feet, the two sticks coming from the ears are hands. Look carefully and you'll see the clown holding three balloons from his left hand. There's hair and she added a hat above it to complete the picture.

It's work like this that convinces me that there is a very bright kid in there. She may be delayed and can't talk very well - but I truly think it's the seizures that are delaying her. We are still trying to get them completely under control. I pray that the brain damage that each and every seizure causes her is minimal and that she can overcome it.

We try not to dwell on it, but it is a sobering thought that seizures cause brain damage. Jess is still having up to 20 absence seizures a day. She hasn't had any partial-complex seizures or apnea-causing seizures for a few weeks now. Those are the ones that have the potential to wipe out her speech, motor control, comprehension and more.

But aren't those pictures amazing! She just loves to draw. :D

Fast Update

Taryn and Jess are moving daycare. The last one point-blank refused to even consider the possibility that Jess was delayed. GRRR The girls love the new one, and we were very lucky to squeeze in.

Jess has tonsilitus, sinusitus, and a double ear infection. Temp up to 39.5 C (about 103 F I think) She was so hot this morning she was shivering and had goosebumps. Poor baby :( She's on antibiotics and we're alternating pain meds.

Jen forgot her adhd meds this morning and as a result she's been rude and obnoxious most of the day. What's worse is that she can't recognise that's how she's behaving. Bedtime couldn't come soon enough as far as I was concerned.

I caught up on some much needed sleep this afternoon. I feel almost human again. Though my mood is still quite down. Not sure what's up with that though.

The prinicipal of the school I worked at pre-Taryn approached me yesterday and asked if I was looking for more than relief work with them. He'll talk more after the holiday break. It would be wonderful if I picked up a fixed term position there.

Where: Travelling in the car this morning.
Who: Jess and Taryn in their carseats in the back seats, with Jo and I up front.
When: Morning teatime, with both kids hungry.
Jess's latest food obsession: potato chips that come in a blue packet that she calls 'blue chippies'.

Jess - "I want blue chippies."
Jo - "No, we're having fruit for morning tea."
Jess - "I want blue chippies!"
Jo - "No, we're having fruit."
Jess - "Blue Chippies!" (can you just hear the volume increasing? LOL)
Jo - "We're having fruit."
Jess - "BLUE CHIPPIES"
Jo - "Would you like rockmelon or watermelon?"
Jess - "BLUE CHIPPIES!"
Jo - "No blue chippies - fruit."
Jess - "BLUE!... (insert absence seizure here)
Jess - "......."
Taryn - "She'll be back in a minute!"
Jess - "......"
Jess - "CHIPPIES!!"

We just dissolved into laughter at Taryn's comment. Jess often stops talking or doing something partway through whilst having an absence seizure. But this was the first time Taryn had thought to comment about it.

Not politically correct, but geez it was funny!

Quiz night and Fashion Freakout

Last night Jo and I went out to a quiz night. Had such a great time! Our table actually did ok, but the best part about it was the company of other parents of kids with special needs. The theme was 'pyjama party', so we'd bought some new pj's for the night. Of course, when we arrive at the venue we both sat in the car saying, "if no-one else is in pyjamas, we're not going in!" It looked a bit iffy for a moment there when several people walked inside the hall dressed normally, but then a couple of pyjama-clad people arrived all was saved. Phew! It was a fun night. :D

It could have been an unqualified disaster from before the night even began. Jen (12) was supposed to go to a bat mitzvah party whilst we were at the quiz night. She'd chosen her clothes and got them ok'd from Jo. Trouble was, she'd grown from when she last wore this outfit. What was originally a mini-skirt on her was now a mini-mini-mini skirt. OMG, when she walked past it was so short her undies showed! She was told she'd have to find another skirt, that she wasn't wearing that one. She threw a tantrum - saying it'd been ok'd and how dare we change our minds and not let her wear it. We said that it was tough, she wasn't wearing the skirt. She cried, she yelled, she was furious. She said she was competing against other girls who had a $60 a week clothing allowance and nothing else she had was worth wearing. That may be, but she still wasn't wearing the skirt. She announced, 'well I just won't go then!' We said that was her choice, but that she'd better make up her mind quickly 'cos the babysitter was coming, and once they did we were going to the the quiz night. Meanwhile I quietly found an alternative skirt from the clean washing pile. Said she could wear this one if she couldn't find anything else. Of course, it wouldn't do either - but at least I'd tried.

Cue doorbell ringing. Settled Taryn and Jess. Made the babysitter a cuppa. Last minute chance for Jen to get dressed in a suitable skirt. No, she was still not going and it was all our fault! We said oh well, shame you've chosen not to go, see you later. Her parting shot was she hoped we had fun embarrassing ourselves in our pyjamas. Sigh, it's hard being 12.

She was asleep by the time we got back. The babysitter said she'd emerged at one point to make her a coffee. We'll see what sort of mood she's in when she gets up. We're probably still the enemy who ruined her party completely and was totally unreasonable for not letting her wear her mini-skirt.

The Little Bugs Have Invaded

I hate them. I loathe them. We've been lucky so far, but it had to happen. Our family has headlice. Ugh!

Poor Taryn's the worst. I've got them, so's Jen. It seems Jo and Jess have escaped. We've done the conditioner treatment tonight, but I'll be going out to the chemist tomorrow and getting some chemical wash.

Taryn was so good having her hair combed through. Of course, it's quite long, so it took about an hour of combing. Poor, poor kid.

Did I mention how much I hate the little bugs?

What does a 3yr old photograph?

The rug (and the strap from the camera.)

A toy tape measure from the builder's toy tool-kit.

One of the dolls carefully put to bed on the fold out kiddy couch.

A dolls pram with a Teletubby awaiting a ride.

The chaos created by Taryn pulling out the entire contents of the dress-up box. Yes, she did play with one or two items from there - found at the bottom of the box of course.

These are the things chronicled by Taryn's first foray into taking photos. :D

Taryn's continued to do very well in the toilet learning stakes. She's been completely dry all day for about 5 days now. I'm just in awe. She's had one poo in her pullup (when waking from a day nap - what's up with that?) but otherwise has been putting everything where it belongs. She's wearing her undies all day and taking great delight in choosing a pair to wear in the morning. Her current favourites are the ones with hearts on them. There she is up there choosing a prize from the prize box.

This morning I told her that when she's putting all her poos and wees in the potty or toilet, we'd have a party to celebrate.

"A party?"
"Yeah, a party for you!"
"A party for keeping my undies dry?"
"Yes, for being toilet trained."

Later in the morning she asked,
"A toilet train... Where's the toilet train?"

Another EEG

Jess is having another EEG tomorrow. The neurologist wants another one done now she's a little older. We fully expect it to show exactly what it showed last time - nothing. Yep, both Jess's EEG's and sleep studies have shown perfectly normal sleep patterns and no seizure activity. This is despite Jess having had observed seizures and a heartrate / breathing monitor that records that she stops breathing and her heartrate slows to dangerously low levels. (Oh yeah, and she goes blue - that's a pretty telling symptom.) The neurologist tells us that 20% of kids with epilepsy will never show their seizures in an EEG. *Shrug* Who knows whether tomorrow will show any seizure activity or sleep apneas?

Marshmallows and More

Taryn's been dry for TWO days now! And get this, she's been clean for TWO days too! Wowee!

Yesterday she stayed dry all day at daycare in a pull-up, and today she was eager to wear undies after going to the potty this morning. She kept them dry and clean all day and when we went out to an indoor playground this evening, she kept her pull-up dry and clean whilst there too. I am just amazed and blown away. She's getting a marshmallow for every wee and a prize from the prize box for every poo. Little wee's that she just manages to push out, even though she went 10 minutes ago, get half a marshmallow. LOL

We've continued to read her personalised potty book to her every night. Today she announced that she needed to go make a wee, "cos her body was telling her it needed to" Wow, wow, wow - something's going in. She's just so excited and proud of herself. She keeps saying to herself, "I'm so proud of me!"

And speaking of proud, I'm so proud of Jen tonight. This evening we went to a function for all the families of an organisation we are with that provides us with respite care for Jess. Taryn gets it too by default of being a sibling. :D Anyway, the function was at an indoor playground that had been hired for our group's use only. It was wonderful and amazing. We met some great parents and some great kids. One particular young lady with an intellectual disability and cerebral palsy was quite taken with us, and especially taken with Jen. (12yrs) She was signing to Jen, and Jen chatted and signed naturally back with her. She took the time and trouble to be with her, talk with her and find a way of communicating with her. She responded to what this young lady was signing to her and did it all normally. I was just so, so proud. Jen could have made an excused hasty exit at any point, but she didn't. She carried herself with grace and dignity and in doing so showed so much respect.

We met some great kids. Some we knew from other support groups for parents of kids with disabilities. Some were new. There was a young boy who spent a considerable amount of time in the disco room happily watching the spinning lights. A young girl of 6 with epilepsy. A little boy with a tracheostomy. Kids with cerebral palsy, kids with intellectual disabilities, kids who were visually impaired, kids who were deaf. Kids from the whole spectrum of disability and their siblings. It was a wonderful experience.

Nobody thought anyone else's kids unusual. Nobody made comments about kids playing in the 'wrong area' for their age. It didn't matter. The kids went everywhere and gravitated towards where they were able to go and interested in being. Didn't matter if a 10yr old was in the 3yr and under area. No-one thought anyone elses kids rude or bad mannered if they bumped someone or walked past someone a little too closely. The evening was full of little scenarios of kids being kids. Kids just being free to be who they were. Kids free of judgement. It was truly a beautiful thing because so many times in life we apologise for our kids and try to explain that our perfectly normal looking child has an intellectual delay and doesn't understand yet. Tonight, for once, we didn't have to explain.

Moments like these...

Life is a series of moments. Here are a few highlights of the previous couple of days. Feels like I have some energy to chronicle them.

• Jess asking for some chocolate, (which she can't have as it causes great intenstinal distress for her,) and being offered a caramel toffee instead. Taking one bite / lick and spitting it out with an, "Euuuchh! No like that! I want chocolate please!"
• Taryn helping me make the beds tonight by bringing me her pillowcase with the cabbage-patch dolls on it and announcing she'd got the 'dollies one'. :D
• Jess unloading the whole cupboard of videos and dvd's to get the the one at the back she wanted. Coming to us and asking for, "want tv please." Us telling her to go pack away the piles of videos and dvd's on the floor first and her going and doing it!
• Jen stepping up to the responsibility of her debating team mates and presenting her portion of the debate tonight despite being sick with the flu'. I was so proud of her!
• Jess finally understanding the concept of 'different' when presented with 3 alike objects and one odd one out. Whoo hoo!!
• Watching Taryn and Jess playing pretend together.
• Hearing Taryn and Jess saying sorry and please and thankyou to each other as a usual, normal thing.
  
• Taryn getting impatient with the help we were giving her with the computer mouse, and waving us away with a, "I do it myself!" So we did. And she did. She's actually moving the mouse and clicking accurately!
  

Ok, Jo and I have set up a game plan for pottying. We looked at where Taryn's had most success with staying clean and dry. They were (in no particualar order)

• Praise, praise, praise
• Emphasising the 'big girl' idea
• Going bare-butt under a long dress whilst at home
• Bribery - aka choosing a prize from the prize box for poos in the toilet
• Taryn choosing when she needs to go, rather than reminders
  

She's an independent little miss (like her mummy!) and she hates being told to go. She needs to have the freedom to be able to choose when to go. But without the bare butt, she chooses to go in undies or a pullup. With the bare butt she takes herself off to the toilet and the first we know about it is after the fact as her little voice sings out, "I did a poo!" LOL So that's where we'll stay. We had success today!

Ahh, who thought I'd be blogging about the daily habits of one of our kids!

Still tired, but not so much... and more pottytraining woes

Life is still tiring, but not as much as the other day. However, I still want this kid potty-trained! She's driving me crazy! I know, I know, stay relaxed, don't let my frustration show, can't lead a horse to water - blah, blah, blah...

We're currently reading the potty book I wrote personally for Taryn every night two or three times in a row. She loves it, but still does a poo in her pullup or undies. Today I put her back in her cloth nappy (diaper for all you USA-ians and Canadians,) cover without any absorbant filling. She doesn't care if her pullup gets wet - it's so absorbant anyway. At least this *feels* wet and cold.

Seems she doesn't really care about staying dry or clean though. She doesn't care if she's all poo-ey, doesn't seems to care if she's wet. Bribing's not working. Praise isn't working. Nothing's working. And I don't know what else to do.

Geez, she starts kindy next year and she's not toilet trained yet. And then tonight I read some stories of kids who are turning 5 and not toilet trained yet and I'm thinking to myself - "Please, don't let Taryn be not trained by then!"

I'm going insane and I know she CAN do it, she used to be dry all day every day, and now she's not. I'm racking my brains and I just can't figure out WHY she won't. If I could just figure out why, then maybe I could fix it.

Sigh, maybe that's the point, maybe I'm not supposed to figure out why - maybe SHE is. If that's so, I wish she'd darn-well hurry up.

Jo went in for carpal tunnel surgery the day before yesterday. It went very well. The anesthatist took the time and trouble to research which anaesthetics worked well for Jo and used them. Jo came out of surgery with flying colours. The numbness in her middle fingers is gone already. She's tentatively booked in for the other hand being done in a few weeks.

Meanwhile, I've been close to tears with stress most of the time. I'm caring for all the kids, preparing all the meals, doing baths and bedtimes etc. And yesterday I was stupid enough to accept relief teaching as well. I was just exhausted. I'm not taking anymore work for the next few weeks.

Public Service Announcement

I interrupt your regular blog reading to announce that Taryn just did a poo in the toilet!!!

Big news here! I sang, I danced, she got a prize from the prize box, got high-fived and she got a sticker. (Do you think I went overboard? LOL)

Oh, and what was the incentive that pushed her into sitting on the toilet to make the poo?
It was Jessie. Yep, Jessie. This morning Jess decided that she wanted to sit on the toilet to do a wee, so she took off her nappy, sat on the toilet and went! I said something to Taryn about Jess being potty-trained before her. (Yep, I'm such a bad mummy comparing the two!)

Not that Taryn's competitive or anything!

No Success in the Toilet Training Stakes

Taryn's been bare-butting it whilst at home, the past week, and once made a poo in the toilet. Huge fanfare was made and she got a prize from the prize box. Today she bare-butted it all day and happily did all wees in the toilet. We needed to go out late this afternoon so I popped a pull-up on her. Not 10 minutes after getting there she went in the pull-up.

ARGHHH!

Sunshine on a (partly) Rainy Day

"Mummy! Come see what I made!"
"What'd you make, honey?"
"I made suns!"

And she had too. She was so proud of herself.The girls do have a blackboard, but the trampoline is such a nice large canvas to use chalk with!

Girl in a Wagon

I caught a photo of Taryn sitting in the wagon outside. I think she's waiting for a pull around from Jess. That's a stone dog she's holding so carefully. Both she and Jess love carrying it around the back yard, taking it for rides in the wagon or putting it in the tray at the back of the trike. I used to worry it was too heavy for them, but you know, they've not dropped in on their toes once.

Trampoline

Taryn and Jess love the trampoline. Yes, it gives me palpitations every single time they're on it. Wouldn't you know it though, the only trampoline on the market that has the full surrounding netting has just had a total recall on ALL their tramps. It would be a dream to sink it in the ground too.

Meanwhile we supervise, supervise, supervise. :D