Friday, June 26, 2009

Infection and stuff

Last Friday, Josh had casts on his feet removed again, and that's when we first noticed last that he seemed really sleepy, and pretty much stayed that way for three days. To backtrack a little, I had taken Josh to his GP on the Thursday for some repeat prescriptions, and also to get a referral for a counsellor or something for myself. (I occasionally have flashbacks to the day of Josh's accident, and I'm not quite sure what to do with what I see or hear in my head. Other times, I can just cry at a memory, or sometimes still when trying to sing a song or something to Josh. So now I have an appointment to see a Clinical Phsycologist in a few weeks. I, or rather we, have lots more going on than learning a new life with Josh, and it will be good to offload on to someone without a biased opinion). The GP didn't actually check Josh over, but that's not to say he would of seen any signs of an imminent infection anyhow.

Sunday and Monday his temperature was in the high 38's, and after a visit from his OT (to modify his hand splints with some extra padding) I took Josh back to the GP. He diagnosed a throat infection, and prescribed some antibiotics, and said that Josh should be fine within 24 hours. His mouth was really dry, the papillae (taste buds on his tongue) were more prominent, and his breath was really bad...

Tuesday, as I started brushing Joshy's teeth and tongue, I noticed blood, so I stopped brushing. Then a little later, as I was suctioning Josh, I again noticed blood. And there was lots of it either through his nose or his mouth. At first I thought it was from a cold sore or something the catheter had knocked the head off, but there was too much. Somehow we could tell though that it wasn't coming from his chest or anything he coughed up. John called the Doctor in the afternoon, who didn't seem too concerned and said he'd look at it when I bought Josh in the next day (for his flu shot). It was pretty freaky though!

By Wednesday, Josh did seem a little better; at least his temperature had returned to normal, and his breath wasn't as bad (and of course he'd stopped bleeding), but he was still very sleepy. We had the therapist from the RIDBC come by again, but Josh wasn't visually responsive, so she tried some tactile things instead (like running his fingers over textures in a book, or placing both hands over a vibrating massager). Then later, when we went to to the GP's, he thought that the bleeding had been because Josh had bitten his tongue, but I'm not convinced of that. I think it was more because his infection was so bad, and his throat and tongue were so infected that the yankeur and suctioning caused them to bleed.

The GP declared him well enough to receive the first of two flu injections (next one in 4 weeks), so that was administered. Paris came along with us as well, because I had picked her up from school after receiving a call saying she was in their "sick bay". She wasn't given antibiotics, but a list of other things to do to assist her convalescence, like time off school, rest, and Vick's. Not good timing for her though because Thursday and Friday were meant to be full days of rehearsing for the school musical both she and Melie are in (which starts next week). She went along to school on Thursday anyway, and I really expected a call to ask me to pick her up, but I didn't get one, and by Friday, she was fine. Whew!

Josh had more casting today, and also an appointment with the Pediatrician (which I had forgotten about; I lost some appointments somehow when I synced my iPhone to the calendar (this appointment included obviously) and wasn't reminded of it, so I didn't attend). I heard she was surprised that Josh hadn't been readmitted to hospital! Yay Joey!

Today is the first day in since last Friday (a week!) where Josh has been truly awake and kept his eyes open for most of the day! It was so good to see his eyes!

Still took it relatively easy though - light exercises and standing frame once.

Yesterday I also met up with my dad to talk to him about the other stuff going on right now, and which I can now share with those of you who dont already know. John and I are no longer together, and I am in the process of moving out. To those who know me, this is not a new thing, since we officially separated last year. We had been kind of working things out, but unfortunately, or fortunately depending on how you look at it, Joshys accident was icing on the cake. One person I know of will think Im sharing this to gain sympathy, but it isnt like that at all. There are many details I cant and wont share, and this isnt the place to do it anyhow. And aside from that, if you dont have anything ncie to say, dont say anything at all, right?

Wednesday, June 17, 2009


Big day for me personally although cant really reveal what its all about just now. Meetings with different authorities and departments and am on the way to a better place in life. Very emotional times, and cant really put all of my focus on where I want it to be, which is mostly on Josh and the kids right now.

As I returned home around 5.30, John was playing back a video he'd just taken of Josh smiling and interacting. It was gorgeous to see. Hopefully I'll be able to get a copy of the piece...

Tuesday, June 16, 2009

Move it!

Josh was quite sleepy until about 10.30 today. I did some of the normal exercises I normally do with him, but took it a bit easy, because I knew he’d get a good workout when the physio came in the afternoon. And workout he got! She understood that while we were in hospital, we probably weren’t shown enough things we could do for Josh (in the way of exercising) and she reminded us that Josh isn’t a fragile piece of china, and we were shown a few ways to pick him up. She put the leg splints on his legs again, and supported him under the arms, Joeys back to her front. We thought we may need the 3 of us to help him support his weight, but Josh did brilliantly. He took some “steps”, aided and supported of course, towards me as his “target”. and this is something I could do every day, perhaps in front of a mirror.

We did some rolls on the blanket as well, and the physio placed him between her legs, on his feet, while she was seated on the lounge. We could sit together like that, and watch tele, or the other kids play. It was good to see some positive moves.

Monday, June 15, 2009

Feet and Legs

Met up with work friend today, who I haven't seen since Joey was in ICU. We share the same birthday (a few years apart), and while we are similar, we are so very different too! Good to catch up. Or rather, nice of her to listen. :-)

John took Josh to the hospital today to have the casts that were placed on last Monday removed, and a new casting put on. Black casts last week. Back to red this week. Joshy's physio managed to get a few more degrees range in his feet.

John also bought back a standing frame. It used for what the name suggests. We lay the stand down, Josh lays in it, we put supports on his legs, velcro strap him in, and then stand the frame up, so Josh is… standing! Great weight bearing excercise! We’re to do this 3 times a day for around 10 minutes a time.

Fab! Another positive step!

Friday, June 12, 2009

Eyes and Mouth

Josh was very interactive today. I did 6 x 2 minute sessions with the electric toothbrush, and I don’t know if it was coincidence, but Josh smiled a number of times throughout the day!

I made a mobile out of old CD’s and DVDs and hung them from string on a coat hanger. John got this connect-it frame (black square metal tubing that pieces together) from Bunnings Warehouse which we hang them from, and its very light weight so I can move it anywhere, and it doesn’t look tacky.

Thursday, June 11, 2009

The Institute

Josh had a visit from the RIDBC today. The lady that came will be his regular therapist. She showed a number of toys and lights etc, and tried to gauge how much he responded to different things. She left a couple of toys with us (on loan pictured below) and gave us some ideas on how to “play". For example, letting him touch the toys during looking tasks, using an excited kind of voice, using "ready, set, go" as the cue when something is about to happen (like suctioning, or flashing a toy), and to try talking even more about what is happening such as “that’s the phone ringing” or "Listen, Kayla just turned the TV on".

She left us a little report summary, and will come back every 2 weeks.

Pictured: duck hand puppet which quacks when you put his beak together, jelly-like amoeba thing that lights up and great for tactile play, and a musical light up toy.

Monday, June 8, 2009


The lovely and proactive Liz invited us to lunch with her family, which is where we spent a few hours today. This was the second time Ive seen Ashleigh, and geez, it great to see her walking about. She always looks so thoughtful and happy. Liz and her husband David are a wealth of information, and shared some of their ideas, and thoughts about things. I'm sure I'll be putting a lot of them to practice over the coming weeks and I'll document as we go.

Kayla, but mostly Kane, had a great time playing with Ashleigh's brothers. Jamiela and Paris had rehearsals for their school musical, so couldn't’t be with us.

It took us 2 and a-half hours to get home; no doubt because of the public holiday. But Josh did fab all day… it was his furthest trip away from home, and for the longest period.

Sunday, June 7, 2009


Last night, my good friend Tan, spoilt me by taking me along to see P!NK at the Entertainment Centre. (Actually, I took us (in my car) and was glad the car made it. Its duel-fuel (has gas and petrol) and has been stalling a bit lately). I was happy I didn’t feel too old, but next time I go to a concert, especially if we’re to be on the dance floor, I will not wear boots with heels! Today my feet are soooooo sore. I must of stood on every inch of my feet in a different position. Anyway, I reckon we were 12 people away from the end of the stage runway. Lots of fab music, dances, and stunts! And shes gorgeous.

Thanks Tan.

(This of course is Pink, and in the 2nd pic there's Leanne, Rach, Tan and me).

Tuesday, June 2, 2009


Royal Institute for Deaf and Blind Children (RIDBC) visited Josh today, after a recommendation from his opthamologist, to see if he'd qualify for services they provide. There were two ladies, and we're chatting away, with Josh in his pram, when Josh "talked" and gave a smile! It was only the one noise, but it was definate; it was just like the other 2 times he made noises (at the GP's, and while out for coffee with my friends). "See?" said John. "We're boring!" :) Its definitely as if Josh responds to new faces, or knows when we're talking about him!

The ladies used a couple of different toys and things, to see what grabbed - if any - his attention. At the moment, Josh tends to look up a lot, and doesn't necessarily track or follow something with his eyes. We could see though that he seemed to move his eyes more for a red tinted picture held on an illuminated light box, and he was more interested in looking at one of the ladies faces rather than the toys.

It was good to see, and also means he qualifies for their services. Someone from the RIDBC will come and see Joey every 2 weeks and check his progress, and suggest different activities etc to stimulate his vision. We can also borrow things from their "library" so we don't have to spend loads of money, although I'm still very keen to get a light box anyway.

Gorgeous Kayla danced in the Sydney West Dance Festival tonight; Melie, Paris and I went along to watch. I love shows like this, and Kayla looked so cute. This pic is from this morning with her makeup and hair slicked back (they had to wear a helmet as part of the costume) before she went to rehearsals. Kane gets to see the performance as part of an excursion through school, and John is taking Josh along to the matinee performance on Thursday.

Monday, June 1, 2009


Took Joshy back to the hospital today to meet up with another company who supplies wheelchairs. We took one for a spin, but there really are many considerations when choosing a wheelchair, so I'm happy to listen to the advice from the OT and PT. A major factor about this one, the Pink Panther (of course, if we went ahead with this one, we'd have to ask for yellow!!), is way to heavy for me to lift in to the car! Josh seems pretty comfy in it, and the head rest suits his needs perfectly, but I like one of the first chairs we tried better (cant remember the name). We can probably get the same head rest to fit in the other chair too, but we have one more lot of chairs to try before making a final decision anyhow.

This is Joey with his wonderful OT and PT. You can see the casts on his feet. I wrote on his left cast "Mummy ♥ Jojo. I do", and John wrote on the other foot "No. Daddy do." Just a thing we used to, and still say... Anyhow, these were taken off today too (by his PT in the pink shirt), and they hadn't left and pressure areas or marks, which is great! First time Ive seen the saw they use to help cut casts off!

Tonight, Josh had a spa, and a little while later Kane joined in. Doesn't Joey look uber relaxed?

Copyright 2009 Joshua