Always

seem to be playing catch up. If its not with the blog, its doing the laundry, or researching or something! There's no such thing as spare time. The minute I slack off, that's when things pile up and I'm like a dog trying to catch it's tail.

Kids are back to school, and thank goodness I reckon. We get in to bad habits during holidays, like late to bed, and late to rise. Josh wasn't getting his first feeds til between 8 and 8.30am, where as normally the first feed is at 7am!

My car is RS. JF replaced the fuel filter, but that didn't fix it. The mechanic I took my car back to thinks the Gas Converter is the problem and guessed at a price of $1000 to fix it. I got my car back today (not fixed) and had it towed to another mechanic who reckons that if the Gas Converter is the problem (he'll check first), he'd install a new one for $300. Big difference, huh?

There had been mention or two of a possibility of a donation of a car or van, but this hasn't eventuated. I was also hoping I wouldn't have to look for a new car until things settled down a bit, but that looks improbable too.

Have really missed not being able to just get out and go somewhere.

Josh is smiling more often. I haven't had a repeat "performance" like this one last week (as far as length of time and across the whole day), but he is definitely smiling more in general. It may be to a song I'm singing, or something we're talking about (Macca's!), or just because he's in the swing or in his standing frame. JF reckons he's "mummy's boy". :-) Its quite funny when Joey smiles; often the kids and I are running around grabbing cameras, and we're lined up ready for that Kodak Moment!




Have been house hunting, and last week the Physiotherapist came with me to check out a home I'd applied for (and she thinks its fine). The story of the landlord and agent is too long and boring to go into, but suffice to say he's (the landlord) is still making up his mind.

Checked out another wheelchair here at home today. Actually, it was the very first one we looked at back in April. From memory, the rear wheels are only 16 inch, so they're not as big as other wheelchairs, but the whole thing is very cushiony, and looks like a cross between an ultra pram and a wheelchair. Goes great over grass too. Its an "all terrain" kinda chair! Called "Quickie Zippy" me thinks... Anyway, as well as refreshing our memory as to what it looks like, and measuring Josh for it, we needed to see if it fits in to our cars. Since my car is a 7-seater, I can only afford to lose one seat to accommodate the wheelchair if I had all 5 kids in the car. To get the chair in the car, one of the fold-up seats will need to permanently come out (no problem), and then we can just take the back of the chair off, the seat off, and one wheel, and fold the chair. It will take a couple of minutes, but shouldn't take any longer than someone with a large pram. On my own, I can lift the frame of the chair in this way. If I only needed to transport 4 of my kids (for example), that would mean I can fold up the remaining rear seat, and lift the whole assembled chair straight in to the back, and it would fit. Trouble is lifting the thing! It weighs around 30kg assembled. Geez Louise! The OT has asked for the wheelchair company to supply a price for a foldable ramp to be included with the rest of the quote for the wheelchair and bits, and hopefully that will be approved and allowed for in the funding...

My nan is apparently doing well, although I haven't been able to see her since last week. She is in a general ward now, and on a light diet. She should be home by the weekend, which is good timing, as I should have my car back by then.

Took Kayla to register for her First Reconciliation tonight... Im not Catholic so the whole process is new to me too...Thankfully, three mums from this street attend the church and are all involved with this years Reconciliation. I can breathe a little easier!

There could be more to write, but since its now after 12am, I'm feeling a tad fuzzy...

Move it

Joey had an appointment yesterday with the Orthoptist to be fitted for a hip abductor. Basically it will be a simple device designed to give his thighs a good stretch a few hours a day, while keeping his hips in alignment. That should be available in a couple of weeks.

Joshy's PT showed us a different kind of standing frame. Its made mostly from lacquered mdf, and tilts back after loosening the screws, which is much easier to place Josh in. The straps and other bits and bobs are easier too, compared to the one we currently use. Its also a lot more expensive if we were to buy one. Something like we use now costs around $600; the mdf version is about $2500! She was so impressed with how Josh's feet flattened out in the feet holders, with the help of gravity, that she decided to not do any more casting for a while and see how he goes. We need to ensure that he has regular sessions in his frame, and watch for colour changes and marks etc on his feet. In a few weeks, if she is happy with his progress, she will do one more casting for a few days to "give one good stretch", and then his AFO's can be fitted and made to measure properly. I thought that sounded pretty good. Josh looked fab, and comfortable in it, and the PT will bring it by on Friday for us (since we had no room in JF's car to take it with us).

I also reminded the PT about wanting to commence hydrotherapy (exercises in a heated pool) and we have now scheduled that to start in a couple of weeks. Yes, the thought is a little... icky. But for me personally, I think that being in a different pool will be more manageable. And kinda exciting in a way.

Saw a couple of nurses who had helped look after Josh during his stay (hi girls!) and they all commented on how tall Josh seemed.

Today, I had my first session with a Clinical Physcologist. Went fine. Didn't feel overwhelmed, or stressed, or unhappy about anything. My life however is not something I can just unload in an hour, so I gave it to her in a nutshell, told her my most pressing concerns, and I like that she gave me some tangible things to work with until I next meet with her.

Today was one of those days that felt all over the place, and I'm left with the feeling of unaccomplishment. There's so much information to read up on, and things to check out regarding Josh and potential treatments etc...

Oh, and Ive heard my nan is doing quite fine. Part of her bowel was removed, but she has been up and about walking with her own physio. :-)

And then...

the next day can leave you feeling exhausted rather than elated!

As far as I know, Josh didn't really smile today. I spent the morning with my dad, catching up over coffee, and more coffee, enjoying the beautiful morning sun, and talking about some serious stuff we've got going on at the moment.

Later, dad took Melie to meet friends at Rouse Hill for me, because Ive been having trouble (more trouble!) with my car over the last few days, and didn't trust that my car would make it that far without stalling in the middle of traffic, as its been wont to do lately. My dads friend had already offered to put in a new door handle so I don't have to climb over the passenger seat anymore, but again, I didn't think the car would make it to where he lives. So, after I met with an agent about my housing requirements, I decided that my car needed to see the mechanic TODAY!

I literally just made it. Of course, being impromptu, I didn't really think the mechanic would be able to do much today, but he kindly offered to "look" for me, and advise me later, so I left the car with him. I didn't know whether to go home, or look through the home maker shops... JF did offer to pick me up, but I thought that was a lot of trouble. So, I had a nice lunch at a cafe, called a friend who wasn't home (I could have walked to her house and had a visit), and then... walked some more. I did pass a bus stop, but that route didn't take me where I needed to go. And it would've been too tricky to hail a cab. And my phone battery was almost empty. So. I kept walking. All the way home. It only took 50 minutes, and I don't walk fast.

Knackered would be a mild word for how I felt.

Around 4.45 the mechanic called to say that my car is a "death trap" (how lovely), and that a semi trailer almost wiped him out at an intersection. He suggested the fuel pump must be blocked (again) but he will know more when he looks at it properly. NEXT WEEK for probably 3 days! Arrrgggh! Not sure how Ill go with no car. Luckily Josh doesn't have any appointments for those days...

While on that call, my Uncle left a message to tell me my nan is in hospital, and would be having surgery later tonight. She's a cool 88, my nan. She has a hernia and her bowel caused a split in it, causing her lots of pain. So I borrowed JF's car to be there with my Uncle when she came out of surgery, and they bought her up to HDU (High Dependency Unit (equivalent to ICU)) just before 9pm. She looked tiny, tired, but fine.

It was a weird combination of feelings, seeing all the familiar machines and tubes, and holding my frail nanny's hands.

Tonight, I hope she and I sleep like a baby. And tomorrow is a new day. I hope Josh will smile.

Smiley

Today was the absolute bestest most fantabulous day! My smiley boy smiled so much today, I am just beside myself!

Josh had a temperature of 38.1, so I have him some Panadol. About an hour later, at 10.30. he made a noise and a smiled, and then just didn't stop! (Actually, it was kinda funny when he smiled the first time or two this morning, we all pretty much raced for our cameras!) On his round swing, he smiled! In the standing frame, he smiled! Catching ball with Paris, he smiled. Laying on the floor he smiled! I just kept snapping the pictures!

Isnt he gor-JOSH?

In review

It's school holidays and of course there's always something happening!

When Jamiela was still complaining of a sore neck and throat by Monday, I took her to the Doctors. Our "new" GP was on holiday, so we returned where we used to go. After checking her neck and throat, he prescribed some neck exercises, Panadeine Fort and Valium! I know one of the things Valium can be used for is as a muscle relaxant, and it was only presrcibed for a small dose for a short time, but I was still extremely hesitant giving it to her, so I didnt... she wasnt in that much pain!

Tuesday I took Josh to the hospital to have his PT check his feet, because they seemed to be turning an odd red / purple colour especially after standing, or holding him vertically. Melie came with me, and because I was cutting it fine to make the appointment on time, I tried to hurry putting Josh in to the car... Big mistake! He kept extending his legs, and I couldn't get him seated far enough back in to the seat. I literally had to get him out and start again. Slowly. At the hospital, I was assured that Joshy's feet changing colour is quite normal, especially for people who don't move much, and even more so in colder weather. She may also consider casting his legs in a bent position for a few days, to see if this is easier to put him in to the car...She also took another sputum sample that the Respiratory Doctor had requested last week; guess we'll know the results of that when we're next there. The PT also had a quick chat about Melies neck, and recommended the neck exercises, and agreed with me regarding the drugs.

Wednesday our OT came to the house and showed the other kids things they can do with Josh to involve him in play, which is also a way of incorporating exercise. They played playdoh, blew bubbles, and even played catch! Kane was brilliantly involved.



Today, we were meant to meet we some of Kane's classmates at The Mean Fiddler, but I didn't get my act together in time. When we were all finally ready to go "somewhere", we couldn't get the rear door of my car open. It happens sometimes when I use the key to only open the rear. Too hard to explain. Anyway, Paris is the only one who knows how to climb over the seat, and slide the lock over, but it can be tricky. Even with my help, it still took us 15 minutes to open the door. By then, I was annoyed. I decided to take us all to the hospital (how exciting) to get Josh a new feeding tube, because his current one had a leak, and then some lunch at the cafeteria, and a play in the playground. Afterwards we went to Parramatta and bought the kids some much needed clothing. It was a loooong afternoon.

Yum!

The stuff Josh needs for meal times for Josh look something like this.

He is fed Pediasure formula 5 times a day through his PEG. At three of these feeds, he also has Baclofen and Artane, and antibiotics are also given at the moment twice a day.

Feeding doesn't take too long; the long thin tube is connected to his PEG button in his tum, the long syringe goes into the tube, and the formula is poured into the syringe. Its just about that simple.

When Josh came home at the end of April, on the 28th he weighed 16.7 kg. Now, just over 2 months later, he weighs 18.3kg!

Dreaming

Sometimes I still catch myself shaking my head, in disbelief I guess, that this has happened to my Jojo. To me. To us.

The kids and I are always talking in "Jojo-isms" and remembering what he used to say. I miss my little boy.

I want to throw a huge tantrum, and shake myself about, and wail "it's not fair!"

I used to be a big believer in things happening for a reason. But this just doesn't make sense. What possible meaning can something like this have? And then there's the comments of "(insert higher power eg: God here) only gives us what we can deal with." Well, shit, I didn't need this kind of challenge, and my Joey sure as Hell didn't deserve this. Couldn't He have given me some other test that didn't affect my kids???

I'm really not liking this state of limbo at the moment. I'm searching for a home (long story), and have packed quite a bit, but the days I'm not Joshy's primary carer, I jam pack with other things like meetings, paperwork, and grocery shopping, or buying other things we'll need when we move, and the list goes on. I do catch up with friends or family occasionally too. And the days I am with Josh, I cant put all my focus on him like I want, because I'm often preoccupied with setting up our future.

I am really looking forward to what in my mind will be a fresh start for us all.

Swing!

Just a quick one tonight; wanted to share a pic of Josh on a swing thing from Ikea.

I gently rock it, or spin it a little... it seems to relax him, and he certainly isnt distressed by it, so I plan on doing this 3 times a day for about 15 minutes a time. I could incorporate his stretching into it aswell, where he needs to lay with his legs apart, and arms out, like a star. This pic isnt that clear, but you get the idea.

Also, the Respiratory Doctor personally called today to advise that Josh has a strep "something or other" infection. We just need to continue with the antibiotics he's on.

Far out!

Could today have been any busier?

Josh had his regular fortnightly visit from his therapist from RIDBC. Josh was the most alert and therefore responsive he has been so far with her; it was so good to see. As usual, at the end, she gave us a couple of things to try, or to work on until her next visit. Basically just getting Josh to "track" an object, and waiting for a response from him before doing something.

Next, we took off to the hospital to check out another wheelchair. The last one we looked at, the Panther, folded in half, but is too heavy; I could barely lift it. I don't think actually that it was the weight, it was more the awkwardness of trying to lift it. The one we saw today also folds, and apparently weighs 22kg without the seat. I could lift it, but only to a certain point. It was also quite rickety, and the OT and PT suggested that the more that folds, or can come apart etc, the more that can go wrong with it. Looks like the recommendation will be the initial chair we looked at from one company (cant remember the name), with a particular headrest from another company. Still a couple of months away anyhow, but the chair is also funded which is fab. The OT also had new day splints made up for his hands, so they look fine, and easy to pop on, to keep his fingers free, and thumb more extended.

After that Joshy's physiotherapist checked his feet. Josh had a pressure sore on one of his heels from the other day; I put his casts on with socks, and normally I put them on without. I think that may have caused it. The PT decided to delay re-casting his feet for 2 weeks, because she was also happy that Josh still had good range in both his feet.

She then sent us off to have his hips x-rayed, to note any changes, and later, after the results come through, advise on a management plan for stretching them etc.

Later we met with a Respiratory Doctor, who we hadn't seen before. I liked him; he had a clear and thorough explanation and description for things. He took a throat swab from Josh, and requested that the PT takes a sputum sample the next time we see her, because he is concerned that Josh has a lingering infection. He prescribe a broad spectrum antibiotic until we know for sure. Because of his cold, its been a bit hard to tell whether the Artane medication is working to help with Joshy's secretions; he's currently getting 2 x 2mg tablets in the morning, and 1 x 2mg in the afternoon. He suggested we try using Hypertonic Saline in addition to Artane. This is supposed to irritate the lining, making Josh cough, thereby clearing his chest to allow easier breathing. It's given via a nebuliser. The doctor sent us down to another clinic to do a short trial using both Ventolin and hypertonic saline while monitoring his stats, particularly Joshy's oxygen levels, to make sure he would tolerate it. He was fine.

This is Josh receiving the HS.



We have also booked Josh in for a sleep study in the next few months to monitor his oxygen levels. The Doctor noted Josh has large tonsils and a swollen uvula (the dangly bit at the back of the throat), which I wouldn't doubt, because sometimes, try as we may to not get it, it sometimes gets suctioned! Ick!

I also had a chat with the Biomedical team, and the Appliance Centre (the place where you hire equipment through the hospital) to see if the suction units come any smaller. But no, they don't.

There are only certain meds that can be purchased through the hospital pharmacy, and since I don't own a nebuliser, I hired it for the trial period of using HS (2 weeks) from our local pharmacy. As I returned to my car, the door handle broke. So now, I use the key to unlock the door, and then have to climb through one of the other doors to either reach over to open the driver door, or just climb over the seat in to the drivers seat! Grrr! Silly car is falling apart!

We didn't get home til 5.30! What a day!

Paris' dad took her to the Doctors, who advised that her "thing" is just viral, and so should rest plenty and eat and drink well. That was easy.

Whew!

Kayla and Kane had their Kindy to Year 2 sports day. Talk about freezing! It was hard trying to keep up with everything happening, while watching Josh too, but it was great seeing the kids have fun.

This is Kayla in the sack race.



Josh had a haircut today, as did Kane. Their last cut was at the end of April! Each time Marie used the electric clippers above Joey's ears, his breathing would slow down. She also noticed he'd "reacted" whenever I spoke.

Upon discharge from the hospital, a few essential items were funded for Josh, including a new shower chair which came today. We had ordered yellow which is the colour of the chair we use now, but they bought the next size up which only comes in dark blue. His bed also came, and looks like the top one pictured here. It looks the most like a regular bed, and has many positions that are operated with a control pad (that also has a safety swipe key). It has a special air mattress too to alleviate pressure areas and reduce the risk of pressure sores.

I went with my eldest, Melie, to her parent / teacher interviews tonight. She's doing great; she is one of those lucky people who doesn't need to study to pass exams, BUT if she did study, she'd do even better. So now Melie just needs to learn how to study.

A few weeks ago, I took Paris to the doctors for her sore throat, and general flu-like symptoms. Tonight, at 8.30, I drove to 3 different doctors to have her seen because she is still unwell. She was somewhat better for a period, and I'd thought over the last few days that perhaps she was unwell because she was run down from the musical performance etc. But she's lost weight, and is lethargic, and has all the other symptoms that go with having a cold. Unfortunately, the first place we went to advised they weren't taking anymore patients for the night; there were only 2 doctors on, and 30 patients ahead of us. Around the corner at the next one Practice, they advised of wait time of an-hour-and-a-half. There was only one other place that a friend reminded me of (in our area), but they weren't open.

I talked with Paris' dad, and he's going to take her to the Doctors tomorrow.

Josh's Father

Josh's dad does not want to be referred to by name and preferably not at all on this blog. If I do need to mention him I will call him JF (Joshy's father) from here on in.

Clowning Around

Colin, my step-dad, popped in during the week, with a knitted clown given to him by Elva and Cecil.

Joey's been lucky to receive a few handmade things like this, and they come in handy for cuddling, propping something up, support, to hold and of course to look at!

Thank you!

The week in review

Last Saturday I took the 4 older kiddies to the movies and dinner. Oh. My.

It's times like this that the age differences are apparent! Everyone wanted to see Year One, and I did think it would be okay. A few minutes into it though, I had my doubts. Kane got bored. Kayla was more interested in her popcorn. Hmmm. We had planned to perhaps meet up with my dad for dinner, but it didn't turn out that way, so we walked around the shopping centre for a bit, since 4.30 was a tad early for dinner. In the middle of Uncle Pete's toys, Kane suddenly decided he was busting to go to the toilet and had to go "right now!" After about 6 minutes of him doing his "busting" dance, we marched off in search of the toilets. "Where are we going now?" he asked me. "To the toilet, Kane. Because you're busting, remember?" "Oh," said Kane. "I don't have to go now". "Oh, yes you are!" I said. "Even if we have to stand here a while, you're going!" :)

Eventually we decided we'd go to a gourmet pizza place that the 3 girls and I went to last year. To entertain the kids, they provide balls of dough, as well as specially printed kids activity books and pencils. The pizzas are divine, except Kayla ordered the wrong pizza and her order came out with a topping she didn't want. Eventually Kayla and Kane swapped their pizzas. Drama Drama Drama. Melie and I again shared a banana pizza for desert, with cream and caramel sauce. Mmmm.

Josh had his casts changed again on Monday, and then on Tuesday I took him to his followup appointment with the Eye Specialist. He put an orange dye in both eyes, and this showed Josh's left eye is a little "drier" than his right, which just means perhaps we should be a little more liberal with the ointment we use. Everything else looked fine.

John was not well, and I cared for Josh 3 days in a row, which was challenging but manageable. I wasn't as productive (with Josh) as I would've liked, but I tend to take a little bit of time getting in to a routine that works for me, and with so much going on right now, I'm finding a definite routine hard! Kane was also off school 3 days this week with a cold, which is what half of Sydney has at the moment I think!

I also thought I'd share a little about the suction unit, in case anyone else out there finds it useful. We modified this a little from how it was given to us. We've added the black velcro straps to hold the yankeur and the water bottle, and have a little strip of plastic holding the bottle at the base. It was becoming a nuisance unscrewing the bottle to rinse / wash the yankeur each time we suctioned Josh, so a hole was put in the lid, and a rubber plug thing put in, so now we just leave the yankeur in there. Now I'm just trying to find a bag to carry it around in when I go out. Its just in a Sussans bag at the moment. It needs to be something large and sturdy, but ideally some kind of flap to make it easy to turn the dial on, and perhaps something that will contain the hose better. The therapist from the RIBDC suggested an esky-type bag.




















I have the larger version of this chair from Ikea. John made the table. Just something different for Josh to sit in.



















This is Josh in his standing frame. His head doesn't look too comfy though. Normally he holds his head - or rather his neck - better than this. John made the little table for this too.




















Melie and Paris have also been extremely busy rehearsing, and this week performing in their school musical. I took Kayla and Kane along last night to watch the show, and Dad came too. It was great, and I'm so proud of my talented girls. I took a pic, but its not a good one. Melie is at the end on the right.