*Chirp chirp*

Excuse me a minute while I clear away the crickets and I'll be right with you...

Right. That's better. So, how are you both? lol Surprisingly, all is well in my world. I guess I should start at the top and break it down in to small bits so I don't miss anything.

Me
26w 1 day today and all still looking good. I'm eagerly awaiting the magical 28 week mark when I think I will finally exhale properly for the first time in 6.5 months. Of course I'd rather see 35+ but beggars can't be choosers now, can they? Still haven't exactly worked out where this child will be sleeping when it makes an appearance or what we will call it so may need to pull my head out of the sand about all that shortly.

Matthew
Only 5 & a bit weeks left of Grade 1. Eek. This time last year I was positively giddy with the anticipation of him leaving his vague, idiotic Prep teacher behind - this year, I am tinged with sadness. He has had the most wonderful teacher this year. She has been firm & consistant, yet kind and empathetic at the same time. She shows a genuine interest in all her students and never fails to reward them for a job well done. Matthew has flourished under her care and enjoyed school so much more this year. He also has a wonderful class of friends as well. Last year he teamed up with a couple of boys who completely managed to erode the small amount of self confidence he did have about himself but thankfully with the help of some lovely friends this year, he seems much happier in himself.

I'm scared of what Grade 2 has in store for him. I hope it is another positive year.

Ryan
Ryan continues to challenge and exhaust me yet I fall more in love with him everyday. He's lucky he has that award winning smile - I'm convinced it's some sort of inbuilt survival mechanism. Lately he's shown a keen interest in learning to write so we've run with that but lucky for him that school is just a few short months away. He claims to want to play rugby next year, which surprises me as he's never expressed any interest to participate in anything that his brother wasn't already doing. We'll see how it goes - if nothing else, the local union club will be grateful for our donation of registration fees I guess.

My lovely husband
T is working hard picking up the slack for his unemployed wife, for which will be forever grateful. He seems genuinely happy at the end of his working day now, which is a relief after being plagued with a string of bosses over the last few years who failed to notice & appreciate his hard work. I've put the pressure on him a bit to do as much travelling as he can during November so that I can be certain he will be nearby in case of any early arrivals so I suspect I've only added to his pre-christmas stress. I do love you, dearest - thank you. xx

I'm not sure if it's the pregnancy hormones but at a time when usually we are just gearing up for the Christmas chaos, this year I'm beginning to feel the pressure easing already and am looking forward to it all as I hope we can just slow down and enjoy doing nothing over the break. I plan to spend as much time as I can with my little family of 4 - just *being*, instead of *doing* for a change. Life is about to get far more hectic & busy in 2010 and I need to remind myself to try to slow down and live in the now.

School holidays - Day two and I already want to kill myself.

We've been patching Matthew's left eye, on his Opthalmologists instructions. It's not going well. He can't see a fucking thing out of his right eye with his left one patched and so far, I have not been able to come up with one single activity he can actually see enough do to while away the hours.



My heart is breaking for him. And please - don't post telling me the good Lord above wouldn't give me more than I can handle, because sometimes he just fucking well does.

...cast off!

Waiting patiently to be called...

One final photo of his cast for prosperity.

The saga is finally over. Last Tuesday Matthew went back in to hospital to have the wires removed from his elbow and his cast removed for good. It was a really long day. His surgeon had called to tell us he wouldn't be taken to surgery until at least 12pm but of course the hospital still wanted us there by 7am for admission. Luckily Matthew was allowed to have breakfast at 6am - he didn't end up going to theatre until nearly 1.30pm. The poor little bloke was starving. He's normally pretty patient and tolerant of inconveniences like that but it really was starting to take its toll on both of us.

The surgery went well. He was only under for about 40 minutes but it took a long time once we was back on the ward to wake up and get moving. We didn't end up getting home until well after 7pm that night. It was a long day and one I think he is glad is now behind him. He can move his arm well now and there isn't any pain but he still can't straighten it right out. His surgeon says he will do so in his own time. For now, he is pleased to be back riding his bike but has assured me tree climbing is off the agenda. Good man...

Opthalmologist # 4 & Rhuematologist

Matthew had his review on Tuesday with both his Opthalmologist and his Rheumatologist.

Rheumatologist

Brilliant results. Matty currently isn’t showing signs of swelling, warmth or pain in any joints at all. He’s got a good range of movement in all his joints although the muscles on the back of his thigh (hamstring, I think – Dr Jenn will be sure to correct me if I’m wrong…) are still a bit tight but hopefully the stretching he does at TKD will help. Or he could just be like his parents and not particularly flexible. Even in my most active & sporty days, I don’t ever recall not be able to touch my toes as being a problem.

Anyway, this news thrilled me. It will be the first winter since 2005 that he has been pain free. Amazing stuff and long may it continue.

Follow up – 6 months (15 December)

Opthalmologist

Left eye -6/6 (perfect), cataract stable Right eye - 6/12 good, but not great.

This is so frustrating. No matter what we do, we just can’t seem to get fantastic vision from his right eye. I don’t actually ever notice that he has a vision problem – when he is using both eyes he compensates remarkably well and there isn’t much he can’t see, but when his right eye is isolated, it is obvious that there is a problem.

There is now no reason he shouldn’t be getting better vision from that eye and Dr D thinks perhaps his left eye is over compensating, which means his right eye is becoming slack. Sooo, back to patching the left eye over the school holidays to force the right back in to action. Matthew is not a happy camper. He hates this game immensely and I completely understand why.

It’s going to be a miserable couple of weeks. :(

Follow up- 6 weeks (28 July).

Cast on...

and back to school tomorrow!

Broken wing

My poor boy has broken his arm. He fell out of a tree he was climbing at school on Monday morning. He did a spectacular job of it - the red circle on xray below shows the bit that is broken. It should be over in the space where the blue arrow is pointing.


Thankfully I was just at home when the school called me. I got there quickly and asked them to call the ambulance for him. There was no way in the world I'd have been able to move him, he was in too much pain. He was so brave - I can only imagine how much it would have hurt and how scared he would have been but he did nothing more than a bit of a cry when the pain got too bad.

The ambulance took him straight to the hospital while I raced Ryan home to stay with Tom's parents (who incidently deserve a medal for all the times they have come to our rescue lately). When I got to the hospital, Matthew was still holding it all together. I thought going by himself in the ambulance may have freaked him out a bit but he was fine. After they did the x-ray they warmed me that he would be taken to surgery to have it repaired. I was thrilled to hear that the orthapeadic surgeon was they same surgeon who did FIL's hip replacement last October - he is a great doctor and a lovely bloke to boot. Matthew had actually met him in the past so that helped a lot to ease the fear.

Matty finally made it to surgery at about 4.30pm. He is now sporting a couple of pins in his elbow to hold it all together and will need another anaesthetic in a few weeks time to remove the pins once his arm has healed. For now, he is wearing a blackslab and will have his proper fibreglass cast put on next Monday. I think he's looking forward to the kids at school being able to sign it.

Here he is in the emergency room, looking fairly unhappy. Note the unnatural point of his elbow. Ugh.

Sleeping peacefully after surgery.

He hasn't been in too much pain since he has been home. He was very tired and worn out the first day but is now just going about things with surprising ease.

Kids are amazing - and you in particular young man, are the bravest of them all. xx

Hi there, remember me?

Wow, you know you've been neglecting your blog when even your husband starts making sarcastic comments. Sorry for the delay, friends and neighbours (yeah, all three of you...lol) - I'll try to make more of an effort.

So, first things first - Matthew's follow up Opthalmologist appointment.

Finally, we got some good news. The long month of removing and inserting his lens paid off - the fluid was right down. Unfortunately we didn't get an accurate measure of his vision in that eye as his lens wasn't in but from what we could tell, it seemed to be much better than in previous visits. Fingers crossed anyway. Medications will stay the same (unfortunately) for another 5 weeks, just to make sure that the fluid has settled.

Follow-up appointment 16 June.

~~~

Next to Ryan. On Friday Ry had his visit to hospital to have his teeth dramas sorted. I made the trek in alone as Tom had to get Matthew off to school. The day went as well as it ever can when you have to watch your child have a general anaesthetic. Surely that has to be up there as one of lifes most distressing events. Tom had the task of being with Matthew when he had his surgery, so this was all new to me and it's not an experience I wish to repeat anytime in the near future. About 30 minutes in to his procedure, the dentist called me from theatre to tell me that he'd done x-rays of Ryan's front damaged tooth and found a small dark spot that could either be:

a). a possible infection starting; or
b). just general damage to the nerve which means he may lose his tooth earlier than normal.

The choice I had to make was whether to extract the tooth while he was under a GA to eliminate any future problems or leave it alone and take the chance that the spot may not be an infection. Given that I'm not exactly reknown for my decision-making abilities at the best of times, I wasn't sure which way to go. I had to quickly ring Tom to see what he thought and after much deliberation, we decided against the extraction. Ryan's dentist did make it clear he was happy to go either way but I've been beating myself up about it since. Should we have removed it just to be on the safe side & avoid having to have another GA? I don't know. If I had longer to think about it I may have chosen to extract but I can't be certain. Argh, this parenting gig is tough sometimes - I felt like someone had asked me if they could lop off one of his legs.

Anyway... Have some photos. Here he is in recovery munching on sandwiches, ice cream, jelly & lemonade. He thought the lemonade part was just fantastic. Cute.

So anyway, as if the day wasn't harrowing enough for his poor parents, the good Lord above decided to throw in a dose of croup as well, just for shits and giggles no doubt. Now, this house hasn't been without a fresh bottle of Redipred since 2003 yet somehow he managed to pick a night where I was needing to get a new script filled. He was quite bad too, I guess being intubated didn't help at all and for a while there I thought we would be heading back to the hospital. We managed to get through the worst of it by sitting in the bathroom with the shower running and then pulling the humidifier out of retirement but it was quite hairy for a while there. I'm well armed for tonight - I have more drugs than you can poke sticks at.

Opthalmologist appt #3

I've missed an appointment somewhere. Just to recap, after not so great news in January Matthew had a follow up appointment in February, which was a bit of a non-event. The fluid in his eye was down a little bit so we were keep meds the same, to be reviewed in April, which leads me to today's appointment.

Left eye -6/6 (perfect), cataract stable
Right eye - 6/36 Not good, that's only the second line of the eye chart. A scan showed there is still fluid on his retina.

Meds: Dr D wants to trial a stronger topical steriod for his right eye for the next four weeks. All his other medication will stay the same. The new drop will have to go in 4 times a day and his contact lens will have to be removed each time. Oh, he's just going to love that news...

Medication:
Flucon - ceased
Prednefrin Forte - 4x per day, right eye
Homatropine - One drop every 2nd day both eyes
Redipred - 1ml every 2nd day
Methotrexate - 10mg per week
Naprosyn - 250mg per day
Folate - 50mg per day

Follow up 4 weeks (12 May 2009)

Matthew's questions

1. What is something mum always says to you?
Matt: I'm nice
Ry: not going to say it.

2. What makes mum happy?
Matt: Me doing the right thing
Ry: I'm not going to say it.

3. What makes mum sad?
Matt: When I am doing the wrong thing
Ry: I said, I'm not going to say it! {insert massive just-woken-up tantrum here}

4. How does your mum make you laugh?
By tickling me

5. What was your mum like as a child?
I can't really answer that one because I don't know it.

6. How old is your mum?
31

7. How tall is your mum?
10 metres

8. What is her favourite thing to do?
going to Dreamworld

9. What does your mum do when you're not around?
play games with Ryan

10. If your mum becomes famous, what will it be for?
Singing (WTF?? Bless him anyway)

11. What is your mum really good at?
Washing

12. What is your mum not very good at?
Playing computers

13. What does your mum do for her job?
Ummmm, I don't know what you do.

14. What is your mum's favourite food?
Lasagne

15. What makes you proud of your mum?
Getting me a good toy on my birthday (nice try, buddy)

16. If your mum were a cartoon character, who would she be?
Mr Tickle

17. What do you and your mum do together?
Have a little chat on the way home from school

18. How are you and your mum the same?
We both like eating passionfruit

19. How are you and your mum different?
I'm smaller & she's bigger.

20. How do you know your mum loves you?
By hugging me

22. Where is your mum's favourite place to go?
The zoo

Grade One

First day of Grade One was a big success. He apparently made lots of new friends, helped the new boy find the toilets, learnt sight words, made an Australian flag (he's dictacting here, by the way..) and counted to 108.

They also drew pictures of their family. Please do note my fetching orange skirt:

The first line apparently says "My little brother is small". Ryan is not amused.

Appointment #1 - Opthalmologist

I had hoped that 2009 would be a year of fantastic news, instead we've been dealt a blow first up. Results of his latest eye exam are:

Left eye– 6/6 (perfect vision!)
Right eye – 6/24 (dismal)

This result from his right eye really floored me. I was keen to see how well he was going after his last appointment as he'd gone very well with his lens these last few weeks. He has worn it almost non-stop and it seemed so settled. I wasn't quite expecting 6/6 vision but I had hoped for pretty close. 6/24 is barely the third top line on the eye chart.

Dr D was also stumped and after examining him thoroughly, discovered Matthew is retaining fluid at the back of his eye. Again. This isn't the first time - almost 12 months ago he experienced the same problem after we dropped his steriod dose and he recovered quickly once the steriods were increased. The problem this time is that his dosage hasn't changed since that last increase. She has now doubled his dose of Redipred and we now cross our fingers and hope. If this intensive burst of oral steriods doesn't work, he will need steriod injections in his eye.

Meds- Drops unchanged. Naprosyn unchanged. Redipred - 2ml for one week, 1.5ml for one week, 1ml for one week.
Follow up – 3 weeks.

He rides

Teaching Matthew to ride a bike was one of the hardest, most frustrating & nerve wracking experiences of my life. There were days when that bloody bike threatened to tear the very fabric of our family to pieces and we all came home in foul moods, grumpy from the heat, frustration & skinned knees. But today we watched him ride around the path at the river and down the slope (that only yesterday afternoon had him in a panic) and discovered that it was also one of the most gratifying and rewarding experiences as well. Definitely a proud parent moment.

Well done, Boy. xx

At least it wasn't me this time.

3.36am - Matthew comes screaming in to our bedroom and dives on top of me. He is almost hysterical and rigid with fear.

Matt: There's something in the kitchen!
Me: Shhhh baby, it's okay...
Matt: *high pitched scream* It's in here now! It's touching my back!
Me: No buddy, that's Dads hand.
Matt: Arrggghhhhhhhhhhhh!

Sigh...Looks like T's getting a mattress on the floor next to him now too.

Disco Fever

Matthew had his second ever school disco last night. The first one he spent sitting on my lap, complaining that the music was too loud, the lights were too bright and the kids were too, well many. I believe we may have even left early...

This time though, I watched him get told to stop dancing on the stage with the DJ's and discovered he knows how to do the Macarena. Who is this kid?

Opthalmologist appointment - October

I’m four days late with this post but I’m sure you all know how that old chestnut goes.

Left eye – cataract still stable (nothing short of a miracle)
Right eye – stable
General sight – 6/12 Right eye, 6/9+1 Left eye (down from last quarter)
Meds- no change
Follow up – 12 weeks (12 January 2009)

This is an absolutely brilliant result. Last visit the opthal reduced the topical steroids Matthew has been on in an attempt to begin weaning him off them altogether. The steroids are such a catch-22 situation. They are controlling his inflammation wonderfully but one of the side effects of long term steroid use, is co-incidentally, cataracts. It would almost be funny, if of course I could bring myself to laugh about it that is. For such a long time we’d kept the recipe the same because that cataract in his left eye was remaining stable, which is the goal but it was suspected that this dramatic reduction of meds would shake things up a little. It didn’t. It is truly unbelievable. Now, if only we can keep this pattern going for another 2 years…

The only downside of this visit was the small slip in his eyesight. We’ve not had a good three months, contact lens wise. Matthew had lots of infections and his lens has just generally been unsettled and irritable. We’ve been back to his optometrist, who claims that the lens is fine so why it has been such a drama lately still remains a mystery. Hopefully, with a bit of perseverance (and maybe just a little bit of bribery) we can push on with it and overcome the hassles. How fabulous would it be to see (ha!) 6/6 vision in the New Year?

Simone

I presume I would have been about 7 when I saw my tooth fairy in the flesh for the first time. I was grocery shopping with my mother and when we got to the check-out, we were served by a young girl whose name tag indentified her as "Simone". I remember thinking she was the most beautiful girl I had ever seen and imediately decided she must have been a fairy - more specifically, my tooth fairy.

Tonight I am going to make my debut as the Tooth Fairy. I only hope I look half as good in my Woolworths uniform as Simone did...

The plight of the working mother

Today Matthew is sick and I am at home with him. My self-professed "family friendly" employer took this news less than happily because Wednesday happens to be the day that the person I job share with has her RDO.

The feeling of worry I had earlier today about his health has been washed away and now replaced with guilt. Guilt that I have asked to have the day with my sick child. Guilt that others have had to re-arrange their schedules to accomodate my family. Guilt that I am now feeling guilty about work instead of focusing on my son.

$28.00

It took the Optometrist 10 minutes (+ 15 minutes waiting) to check Matthew's eye (yes, singular) tell me the focus of his lens is perfect, the fit is perfect and he'll see him again in 6 months. Money well spent, you think? Well, you'd be wrong. The appointment was completely bulk billed.

The $28.00 was for the fucking parking.

Monkey in the Jungle

Matthew had his school concert on Thursday night - dear Lord, it was breathtakingly cute. 100 prep kids all dressed in various costumes, singing and dancing to Bindi Irwin songs was more than I could take. I believe I even shed a tear. Gosh, I forget how little he is sometimes and expect so much of him.

10 points though to the reader who can pick Matthew in this photo. If you are really lucky, I might even send you a homemade, real live, tangible present in the mail since that seems to be the done thing these days. Go on, try me. You just never know...

..

Karate Kid

Matthew started Taekwon Do lessons last night. He's been asking for a long time now to be allowed to have a go but I've been reluctant. I wasn't sure that a Martial Art was the most appropriate sport for an arthritic child given it is fairly punishing on the joints but Matthew's physio has given him the go ahead, so here we are.

So now we get to meet Sporty Matthew. He's suddenly developed a keen interest in sit-ups & push-ups and thinks he has been given a licence to perform swift kicks to his little brother when he's being a pest. God help us all.