Oops!

Been a long time I know... busy, tired, and poor Internet connections (ah-hem!).

Wow! Where to start?

In fact, more has happened than I can remember...!

The lovely Jo and Michael from the Samuel Morris Foundation kindly donated an Otto Bock Lars Paediatric car seat for Josh to use.





Eventually I found someone to put it in, and the best part was they they came to our house and it was cheaper than other places. (They're called The Capsule King). The actual seat swivels which helps when getting Joey in and out of the car. (When Josh has casts on his feet, his feet still get stuck on the door when I try to swivel him if he extends his legs, so this kind of seat is fabulous for vehicles with sliding doors).

Thanks Jo and Michael.

We had a follow up meeting with the Rehabilitation Doctor who is pleased with Joshy's progress, and noted that we appear to be managing Josh well. We also had a follow up meeting with Josh's paediatrician who said she was surprised that he hadn't been back in hospital with a chest infection. She suggested we stop using the Hyocscine patch to manage his secretions, and use Artane which can be given via his peg. We start at 1/2 a tablet for the first week, and gradually increase the amount each week until we're happy with the amount of times we need to suction him etc.

The other day (Tuesday?) before Josh was due for more casting, I thought I'd hurt Josh's foot; I was massaging his feet, and manipulating them to stretch them a little. I heard - or felt? - a little click, and he sort of twitched, his eyebrows knitted together and made sounds of distress. He continued to make sounds whenever that foot was pressed or moved a certain way. Thankfully, the physio took an x-ray to be certain nothing had dislocated, which nothing had, but perhaps I'd pulled a muscle or something. Not a good feeling (for me). The physio decided to go ahead with the casting anyhow, and before the meeting with the paediatrician, she checked to make sure his toes weren't blue etc, and decided to leave them on for a few more days.

Another major thing that commenced is that John and I now alternate the days we spend as Joshy's primary carer.

Melancholy

Don't most of us have a regular butcher, and have chats about life in general while choosing your steaks or chicken? Bit like your hairdresser, where you tell them your whole life story, except you see the butcher more regularly! I saw my usual butcher yesterday for the first time in more than 4 months. "Haven't seen you around for a while" he says to me. "No, bit busy". "Yeh, I guess, with your family. How are all the kids?". Hmmm, well, actually... I give him the brief version of events. "Ah! Lemme give you some eggs love. For the little bloke".

I have been a bit sad though over the last couple of days... I'm always remembering what I called "Jojo-isms"; things that Josh used to do or say, but they seem to affect me more at the moment. My cold has been lingering, so I bought some Multivitamins from the Health Store, and something called Astra 8 Immune Tonic. Fingers crossed that I feel better soon. I also bought some Manuka Honey for all of us. This site explains some of the benefits of taking it orally (good for sore throats for example), or applying topically (like cuts, abrasions and pressure sores).

I have visions of Josh when we went out to dinner at the Lone Star on the Gold Coast. He had his own menu, and he was having a great time looking at everything on it. When I asked him what he wanted, he said, in his cute Jojo way, "I want all-a-dem", while sweeping his hand across the menu to indicate the same.

We all tell our kids we love them... I would say, "Jojo, mummy loves you", and he'd put on his Jojo face (arms crossed, head down while looking up at me through furrowed brows), and he'd say "No! Daddy does not you!" I'd pretend to sulk and say "But I do!" and then he'd smile and say "You love me widdle bit". I'd say ""I love you a little bit a lot! And he'd say "okay" and we'd hug.

Josh in the car, with his sunnies on, singing our favourite song at the top of our voices! (I briefly mentioned it here). It's called Corner of the Sky from the musical Pippin. Lisa Crouch mixed the song with Up, Up and Away, and it was ours! I haven't been able to play it in the car since. I'd love for you to hear it, but there isn't a version on the 'net.

Josh loved his food, especially sauces and condiments. He'd quite happily dip a hot chip and lettuce in tartare sauce and tomato sauce and think it delish! He'd drink the remainder of the chicken gravy after a roast dinner, seated under the table, drinking from the jug. In fact, he'd often go around to everyone's plate after they'd left the table, and pick what he wanted off them.

He had recently started biting his nails, and sometimes even bring his toe up to his mouth! Eww! I'd tell him to stop, and he'd say "But I haf to!"

Josh would want a snack or treat from our pantry and if I said no, he comically sneak over to it anyway. Id tell him not to open the doors, and he'd say in a sing song voice, with a huge grin, "I'm doing it! I'm doing it!"

For a long while, Josh would say "Can I wash Shamalanga?" And for it took me a bit to work out he meant "Can I watch Shark Boy and Lava Girl"?

We went to Surfers Paradise for 10 days back in January, and the rear of our apartment shared a huge fenced and grassed area that overlooked the beach. On the fence were 3 signs, that all said the same thing, which Josh must of noticed because he asked me "Mum, what does that sign say?". I told him it said "Don't feed the birds". He slapped one hand in to the other for punctuation, while saying "Don't feed the birds. Don't feed the birds. Don't feed the birds" and then put his hands out, palms up in a kind of shrug, and said "How funny's that?"

Sometimes, when I'd tell Josh he couldn't do something, like (for example) watch another DVD, he'd fall in a heap to the fall and/or simply say, "oh! That dick-a-less!". Translation? "That's ridiculous!" :-)

Of course there are so many things. I actually am not ready to remember them all right now. I cant look through the photos or home videos yet. I know though that while I can remember them (eventually), I can create new, good memories. But it's really tough.

My baby was still awake last night at 11.30, after we'd watched "Marley and Me". When everyone else had gone to bed, I held Josh on my lap, and we had a cuddle.

And he fell asleep. :-)

Today, Josh and I met my Nan, Uncle and 2 brothers at Pinegrove Cemetery. On Tuesday it will be a year since my pop passed. I remembered this picture, of my Pops beautiful big hands, and Kane's 2 week old hands (taken 18 April 2004). Its one of my favourite photos.

Tonight, I again held Josh and he went to sleep.

Equipment

Just thought I'd share a couple of pieces Josh uses...

This first one is a Medifab chair, which can be used in the pram, or taken out and used in the Lowrider (ye-haw!) as pictured. The pram is on loan from the hospital until the wheelchair is decided upon. Initially, the pram used a slightly different Medifab seat, but at the meeting the other day, our Occupational Therapist realised that the Lowerider she was about to loan us could be interchanged. This is actually a cool little chair, which can be adjusted to tilt back at varying angles, but I love how it can be wheeled around, so Josh can join in where ever we are. And its yellow (Joeys favourite colour!). The headrest is actually quite good too, because Josh tends to favour his right side, but this helps support his head more. In the background is the suction unit we need to take everywhere...

And this is Josh in his Leckey shower chair (also on loan). It has a base that it comes away from, which then allows this top part to go in the tub. But, as you can see, it needs quite a bit of water! Its not like Joey has been crawling through the mud, so afterwards, when Josh was finished, Kayla and Kane had a bath too! Josh looks soooo long in this photo!
You can also see Jojos peg button on his belly, through which is how he is fed. If you look closely, you can see 3 little scars - there's actually a 4th one in his belly button so the scars create a diamond pattern), and these are from the incisions the doctors made to put his peg in and tie the top part of his stomach. :)

The Wiggles!

We saw the Wiggles today, and they were fab!

Originally we were meant to go yesterday, and they had a arranged for a "meet-and-greet", but we had the meeting with the rehab team, so we changed the tickets for today, but unfortunately, no "meet-and-greet". :( The concert was at 10am, at Hornsby RSL, so it was a bit of a stretch for us to get there on time anyhow, but we made it with about 15 minutes to spare.

Kayla went in front a bit with all the kids who weren't seated in chairs, but Kane hung around with us. I love kids concerts and shows! And I love when kids enjoy it too!

there was no real reaction from Josh. At times it seemed as though he was "looking", but it was a bit hard to determine really.

Afterwards Kayla wanted to know if we could play in Time Zone... After I stopped laughing, I had to explain that what she could see were actually poker machines!

Things that light up and flash are recommended for kids like Josh who have Cortical Visual Impairment to attract their eyes and stimulate them. Its not that easy to find things, especially ones that don't cost an arm and leg. But! I bought this from the Wiggles and it's pretty cool.

Home Pool Checklist

If you have a pool, or know someone who does, then this checklist is essential viewing.

From the Samuel Morris site:

Both the New South Wales and Queensland Governments are reviewing their Swimming Pools Acts and are calling on public submissions to inform the legislative process.

The New South Wales review papers can be found here, and the Queensland paper here.

Catch Up

Monday John took Josh to the hospital to have plaster casts put on Joshy's feet. This first time was mostly to ensure he was able to tolerate having the casts on, ie: no pressure spots, no rashes or irritations etc. They went from toe to just below the knee and looked big and cumbersome as casts are. The casts were done in blue, and the kids drew a couple of pictures on them. today, we took Josh back to have the casts removed, and the physiotherapist was happy that there were no marks etc on Joeys feet. Josh has to go back next Tuesday for the physio to stretch his feet in to more of a 90 degree position, and then she'll put the "proper" cast on. That will stay on til the Friday, and then most likely another casting placed, stretching the feet a little more.

I caught up with some friends for coffee yesterday, and the best thing was that Josh did his smile "thing" and noises for quite a period of time, and they got to see it! It's also good when other people notice subtle changes in Josh, because when we're with him everyday, sometimes it's hard for me to see.

Kane, the sweety, has not really been participating in "news" at school; only once or twice. He didn't do it a preschool either. He is extremely self conscious in front of a crowd, especially those he doesn't know. His teacher tolerated it for a while, but now has been trying to encourage and reward him for giving news a go. Tuesday is Kane's news day, and it was "l" week, so he had to take something beginning with the "l" sound. He took "Lightning McQueen" (and a toy level for backup). Yesterday afternoon, when he came home, he immediately placed a yellow helicopter on Joshy's chest... he chose it out of the teachers special basket for doing his news! Awwww.

We also had a followup meeting with the rehabilitation team about Jojos progress, and they were encouraging regarding our care, and were pleased with Joshy's progress. Always good to know.

Sleepovers

The weekend was a big one!

Kane had his first sleepover, and it was at his cousins! He was so looking forward to it! He went the Friday night, and on Saturday he had a party to go to, so John took him to that. He had a fab time, and said that staying at his cousins house (3 boys) was the best!

Kayla, Melie and Paris went to Sibling Camp, held by Bear Cottage, at the College at Manly from Friday night through to this afternoon. It was Kayla's first time away for more than a night at somewhere other than family or a friends house, and she was a bit worried she wouldn't be in the same room of a night as her sisters. Families were placed together though, so it all worked out great, and they had a good time too.

Last night, I went out with some school mums / friends to a local tavern. I had a great night, but unfortunately had too much too drink and was sick. Well, actually, although I definitely did drink, I think I became more inebriated because I was already tired, hadn't drunk alcohol for such a long time, and, the main one - which didn't even occur to me until almost midday today - I was on antibiotics! Oops! I slept in til about 10am, and actually felt almost 100%.

This evening, my step-dad and brother came around with some home cooked stuff. Rus made a stew concoction, and I made some potatoes to accompanying them and some other veges. Rus also put the stew into a cob-loaf, added cheese, toasted it, and it was like yum this way too. We tried our first pomegranate, and red grapefruit too. Mmmm...

And through it all, Joey has been fine. John and I are doing alternate nights as far as looking after him now, so tonight it's my turn. Lucky I had a sleep-in this morning!

Yay! A smile!

For the first time in what is mostly likely to be years, I am on antibiotics for some infection. Just a cough / cold thing, but I was more concerned about passing anything on to Josh, which is why I took the trip to the Doctors last night.

This morning, we took a visit to another Doctor, who was one of two referred to us by our Case Manager. After the Doctors' question of "how does Josh communicate", I had just finished explaining how he tends to vocalise and makes sounds to let us know he is in discomfort (for example), when Josh made this "oooohhhh" sound. I looked over, and he almost looked as though he were smiling, and he made another sound. I stood in front of him, and his whole face looked softer somehow. He made a few more sounds, and we were so happy.

The OT came yesterday and gave Josh his new day splints (which he is wearing in the pic below). I think he looks like a boxer in training. he'll need to wear these for a few hours each day. They're a bit tricky to get his thumb into though...




















Tonight though, was the best of all. Josh absolutely smiled at me, and then John and Melie. (Paris managed to grab this quick video of him.) He was also making soft "awwwww" sounds every now and then to go along with it. And he would look from me, to John, and then, when Melie came, at her, and back to me. Slowly, but surely. We interacted like this for about 15 minutes!!

To the uneducated eye, the change in Joey's mouth and face is probably subtle. To me, it's beautiful.

Monday 11/5/09

I did the night shift looking after Josh last night with him in his room, and after I put Josh to bed, I didn't actually sleep til 1am. Around 2.30am, Kayla woke me saying she had a headache. Just guessing, but perhaps it had something to do with her hard plastic headband squeezing in to her head while she slept? Since I was up, I repositioned Josh to sleep on his other side, and he had a cough. Unfortunately, when I wake, it usually takes me a while to go back to sleep, so I didn't drift off again until close to 3.30am or so. Josh didn't cough or wake again until almost 7am. He had a great night; just wish I could train myself to fall asleep better.

I had an appointment with our Social Worker today, and Josh and Josh saw the Occupational Therapist. After my meeting, I joined in on Josh's, and found that the Physiotherapist was also there. John had been showing them what exercises we do do, and they showed John other ways to do things, ways to position him, including tummy time, suggested surfaces to lay Josh on (firmer rather than softer), etc.

Josh will be having some day splints made for his hands, which basically are made from wetsuit-type material, and support his wrists, keep the main parts of his fingers free (so he can use them), and keep his thumb stretched out.

Josh will also get feet casting done next week. He cant flatten his feet properly, so that when we try to put his feet splints on, also known as AFO's, his heel doesn't sit flat on the bottom of the splint. His toes tend to "point". Casting will require that his feet are positioned so that for example, if he were siting in a chair, or pram, his feet would sit flat on the floor, or footrest, instead of only his toes touching, and plaster of Paris is used (like a cast for a broken bone). That stretches the foot out for a couple of days, they take the casts off, and then stretch the foot a little more, so that eventually, Joeys feet will be in the "correct position". That should make it easier to place his AFO's on, and even normal shoes.

We went to Westfields, and finally found a bag (in the baby section!) suitable for all Jojo's bits and pieces we need while out.

We left home at 9.30, and returned at 3.00pm! An all-day event!

Josh has had a great day today... he really seems to be "looking" more lately. We try to talk to him all the time, and tell him what's going on or involve him in conversations etc. And even Kane is slowly involving Josh in more of his passing comments.

Mothers Day

Mothers Day was a mixture of things. Low key, uneventful, busy, sad, and normal, all at once.

I slept in Joeys room last night, while Joey slept with John in our bed, so Kayla and Kane came in to me yelling Happy Mothers Day! They had hidden pressys (purchased from the school Mums Day Stall) around the loungeroom, and I had to play "Hot or Cold" to find them. We took the pressys in to where Josh was and I (or rather, Kane) opened them.

My eldest two girls were at their dads for the weekend, so I was planning to take the other 3 out to McDonalds for breakky, but it was raining, so Josh stayed home with John.

Later, we got busy moving stuff about, because Johns dad officially moved back in! And then, for dinner, Kayla, with Johns help, made us all scrumptious mini pizzas! And I cleaned the kitchen! :-)

I especially missed my mum today, and was hoping for a smile or something from Josh...I would have liked the girls home. I would of liked the whole day to be different.

Next year will be better.

My life's song

As I was driving home yesterday from buying nappies and stuff, a song came on the radio from Miley Cyrus. Now, I aint no fan, but I hadnt heard a full song of hers on the radio (that Im aware of) and thought I'd listen out of interest.

O.M.G.

I got goosebumps, got a tear, and thought yes! Here's what I'm all about right now!

Below are the lyrics, and this is the film clip (which also has the lyrics visible for this version).

I can almost see it
That dream I’m dreaming but
There’s a voice inside my head sayin,
You’ll never reach it,
Every step I’m taking,
Every move I make feels
Lost with no direction
My faith is shaking but I
Got to keep trying
Got to keep my head held high

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

The struggles I’m facing,
The chances I’m taking
Sometimes they might knock me down but
No I’m not breaking
I may not know it
But these are the moments that
I’m going to remember most yeah
Just got to keep going
And I,
I got to be strong
Just keep pushing on,
cause

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

There’s always going to be another mountain
I’m always going to want to make it move
Always going to be an uphill battle,
Somebody's you're going to have to lose,
Ain’t about how fast I get there,
Ain’t about what’s waiting on the other side
It’s the climb

Keep on moving
Keep climbing
Keep the faith baby
It’s all about
It’s all about
The climb
Keep the faith
Keep your faith
Whoaaa Ohwaoooh







xx

Onwards

Wow! We've had our gorgeous boy home for more than a week!!

You know when you go on holiday, and when you're there, it feels wonderful and different, but as soon as you return, to home and work, it was like you never left? Well, 12 weeks in hospital started to feel "safe", but now, it almost feels like we weren't even there! I think that's a good thing!

I haven't taken Josh shopping again, simply because with the amount of groceries I get, its quicker and easier to leave Josh with John. I did a huge shop Saturday, and a "top-up" today, so that's going okay.

We've been working out different things to position Josh on, other than his stroller. Until we receive some (funded) equipment (that our team at the hospital organise) (only one or two things other than the bed/mattress, wheelchair, ceiling hoist and shower trolley), we lay Josh on a lounge cushion so that it can either bend so he is in a semi-reclined seated position, or we can lay down flatter. John bought a banana lounge and we put the lounge foam on there in a couple of different positions. Sometimes we hold him in our lap, or lay him on the rug outside, while "exercising".

John also bought a monitor with a camera, so not only can we hear if Josh coughs, we can actually watch him too. Tonight though is the first time Ive really used it, because Ive put Josh in to bed earlier. Hopefully he is more relaxed and rested, and for a longer period.

Tonight will also be my second time of "night shift".

Joey normally falls asleep mid afternoon, and we just move him around and from room to room. In the evenings, we settle in the lounge room, and then John has been going into Josh's room around 9.30pm and sleeps on a makeshift bed. I'll look after Josh til about 12.00am, and then carry Josh to his bed. Sometimes Josh is restless as soon as I move him, and other times, a little while later. John sleeps as much as he is able, while keeping an ear out and tending to Josh through the the small hours, and I go to bed, and then we're all up at 7am.

So, tonight, we thought we would put Josh in to bed at around the same time as the other kids, I'm watching him via the monitor, and John is catching up on sleep. I'm going to bed (in Joeys room) shortly...

We had a visit from the company who we may be getting Joshy's wheelchair from today. We also tried something that looks more like a pram, but it doesn't look as supportive as the chair, and the Occupational Therapist also pointed out the pros and cons for each thing. She has also "loaned" a thick, foldable floor mat for play time. We have another meeting with her on Monday (or rather Josh and John do as I have an appointment with the Social Worker at the same time :-( ), and John is going to show her what exercises we do do, and get some more ideas on other things we can do, and get a bit of a "program" happening etc.

At the hospital, we got in to the routine of showering Josh every second day, mainly because the patch that goes behind his ear (that helps dry up secretions) is changed every second day, and we don't want to risk getting it wet or it may lose its effectiveness. I had showered Josh a couple of times by myself, and while its not exactly easy, I was glad that I could actually do it, considering the first few showers I couldn't even watch. I showered Josh myself here at home while John was out on Monday, and John did it himself while I was out today.

My big girl is closer to becoming a woman; she had her 14th birthday on the weekend. I made a cake from piled profiteroles, we bought some take-away (it was her choice), and she had a girlfriend stay over to watch DVDs and go on a bike ride. On the Sunday, while she was out, and John was at his dads, I tried to watch "Australia". Talk about an epic movie. It took 4 hours to watch it, because if it wasn't Josh (needing suctioning), it was Kayla or Kane! Lol!

Ah kids!

Ch-ch-ch-changes!

Yesterday was a big day. Physically and mentally.

Josh and I went shopping. Needed to buy Kayla and Kane new sneakers, and Melie's birthday is on Sunday. And, as usual, there's always groceries to buy...

I don't have the disability parking tag yet, but even if I did, I still need to consider where exactly I should park. (I should also mention here that I found my license! Or rather, John handed it back to me; he borrowed it for when he was going to the RTA regarding the disability parking tags, which I'd forgotten!). When I am financially able to purchase a new car, I'd probably choose one with wheelchair access from the rear of the car; at the moment, we put Josh in, and get him out, through the normal passenger side door. No easy feat, with all that balancing, and the height of the car, and the general positioning of Josh. So, yesterday, for my first expedition, I parked in a space that was "open" on the passenger side. I had to watch for cars that occasionally went that way, and there was a pillar to contend with, but otherwise it was a reasonable spot. So, ten minutes to get Josh out, and the pram loaded up (Josh, suction unit, care bag, my handbag), wasn't too bad...

Browsing the shops also wasn't too bad, I guess. I had to stop every now and then to wipe Joshy's mouth after a cough, and tried not to look at other people looking at my son, wondering what they were thinking. We have to do "something" for Josh every two hours, so at 12pm, I whisked us away to the newly refurbished parents room, tucked us away in a private cubicle, and gave Josh his antibiotics, and did his eye care. And dreamed of a cappuccino.

Afterwards, while making our way to Woolworth's for groceries, I realised that I had no where to put any groceries, let alone a free place to hang a shopping basket from, so we made a detour down to the car to unload the shoes I'd bought (for Kayla and Kane), Melie's pressy, and some other bits.

As soon as I walked in to Woolies, I saw a friend (school mum/work), she got teary and that started me. Man! I wanted to just crumble in a heap and let free the river of tears, and have the wash carry me away.

Clearly, I will need to be even more organised when it comes to food, and meal planning. I had to get help to carry items to the car. I'll need to either shop on-line, or shop (planning well in advance) when John can care for Josh. Icky as it sounds, you don't realise until you're in this position, all the "stuff" that comes with looking after someone with a disability (severe or otherwise). I had to suction Josh in the lolly aisle. I tried to be as discreet as I could, but hey, you gotta do what you gotta do. I also had to be aware of the time that Josh was in the stroller; no more than two hours in the one place or position. (The air mattress for his bed, (when it comes) is different).

Even just the order of things when it comes to putting Josh back in the car is challenging. My car doesn't have central locking, and the key doesn't work in the passenger door. I wheeled Josh to the drivers side while I unlocked the door, while leaving the groceries at the rear of the car. I wheeled him back to the passenger side, and then decided to put my bag in the front first, so at least I wasn't tempting anyone (who was in that frame of mind) to pinch it from me. Next, do I put the suction unit in or Josh? I decided on the unit, because if I needed to suction Josh while putting him in his seat and it was still in the bag on the rear of the stroller, it would take too long to unhook the bag, and get the hose etc out. The bags of groceries had to be put in on the floor on either side of Josh, because even though the stroller does collapse (somewhat), we leave it put together for convenience, and it takes up almost all the room in the back of my 4WD. Bla bla bla.

Anyway, the main thing is, we did it, and we can do it again. And even though I dont have to like, and will never like this situation, I know that the next time, and each time after that, will be easier as we get into a routine and become more organised.