Settling In

First off, I wanted to talk a little about this blog. It has been mentioned that this blog should be only about Josh...

When something like this (what happened to Josh) occurs, it doesn't just affect that person. It affects everyone to some degree. I try to write about everyday stuff so that you can see how lives change or what is affected. It isn't only about Josh, because I have 4 other children, who play a big part in Joshy's life, and mine too. It isn't meant to be a sob story, or a "please pity me" page. I'm simply trying to share as much of the whole picture as possible, so you can understand.

Life is slowly getting in to a routine. We are out the door most mornings by 8.10. Not bad.

By Wednesday, I was so happy to see Josh. It felt I hadn't seen him in a long time. Within an hour, he smiled.

Thursday we attended a group hydrotherapy session with other kids with various disabilities. It was so good to see smiles on faces. We sang songs, and did movements relating to the words, and even used sign language. Josh was definitely more awake, especially by the end (which was noted also by other people there). We "qualify" to attend a weekly session (there would be no point going if Josh was asleep throughout the whole thing like he was last time), so each Thursday morning, Josh and I will attend. The physiotherapist had warned me that afterward my legs would feel heavy and she was right! They were like jelly! I was sooooo happy though. It was like I had a rush of happy endorphins go through me, which lasted hours. Thursday will be the swimming day then, because in the afternoons, Kane has his lesson.

Kane also received a Citizenship award at school. So proud of him.



Josh has smiled a few times a day during his time with me, and that's so good to see.

Have had a couple of friends drop by, and relatives, who are all just amazing supportive people. We are so thankful to have them in our lives.

On Saturday, I dropped the kids back to their dad, and immediately felt down. Not a good feeling. I cranked the music up in car and sang along to help pick me up...

On my days without the kids though, I have still been super busy; mowing the lawn for the first time in my life, putting furniture back together or from scratch (from flat packs). Feeling very capable, except for when it comes to tuning the TV. Haven't figured that out yet, and we haven't watched anything since we moved in.

I took myself off to the movies on Saturday night and saw The Ugly Truth. Very funny, and enjoyed immensely.

My statement

A response to the recent media coverage:

Thank you to everyone who has supported Josh over the last 6 months.

Words can only begin to describe how deeply moved I am on a daily basis.

I'm also incredibly thankful to 2DayFM. We were reluctant to go ahead with the recent interviews, but after planning Joshy's treatment based on pledged donations, we were heartbroken when the actual amount received fell short by 60%. Of course, that can happen with this type of thing, and we never felt the pledges were "owed" to us, nor did we ever ask for a hand out (It was a family friend who contacted the station unbeknown to us). When 2DayFM sent through a list of names and numbers to call ourselves, that's where my comment of being made to feel like a debt collector stemmed from. As 2DayFM has since clarified, this is where the misunderstanding occurred.

I'd like to make clear that these were concerns over the greater fundraising effort, not Kyle Sandilands' remarkable individual donation, which we had been in contact with his manager about.

Kyle's manager explained to me that the delay in Kyle's donation stemmed from Joshy's father (JF) claiming I was "setting up house" with money specifically donated to Josh; "living large" as Kyle referred to it. Whether this was said or not, such alleged claims are hurtful and baseless. Though I should not have to defend myself regarding this, I can easily prove beyond all doubt that I've not even touched a cent. (We will be using it for Joshy's ongoing treatment and care).

What happened to my Jojo was, and is, devastating. Such an event will either bring a family closer together, or tear them apart. Unfortunately, Joshy's father and I are no longer together, and will share care of three of my five children. Even though I’m more than hurt by his alleged accusations about me regarding Joshy’s money, I still hope to maintain a civil relationship for the sake of our children.

If you still have any doubts, concerns, or questions, feel free to say hello at wclimpson @ gmail . com. Thanks again for your support.

Rollercoaster

Wow! What a tumultuous week! Finally things are settling down after the media hype, and moving in to our new place.

For those who don't know, the main story to set the chain of events for this week is here.

Followup story is here.

And then, the wonderful family from Strategic Aviation and the meeting with them is here. A huge thank you to Rachel and Michael for such generosity. Such genuine, unpretentious people.

Ive had the good with the bad this week (calls, emails, blogs, comments, other media), but overall, I'm reminded of how supportive and wonderful people really are. Your offers of a shoulder to lean on, or an ear for listening are the most precious gifts.

I had some wonderful friends help me move, and my "sisters" helped do a little unpacking. The rest of the unpacking and getting organised in to the house is proving to be a bit slow. With everyone at school etc for a couple of days next week, I should have most things unpacked then. There have been other feelings of accomplishment though; Ive put together my first set of drawers from a flat pack! With no mistakes! I haven't worked out tuning the TV yet though, so the kids have been without a TV for a few days (but I don't think that's a bad thing).

We got a dog during the week also. A King Charles Cavalier. I wanted a companion-type dog for Joey, as well as one that didn't yap, and wasn't over excitable. Our Archie (short for Archibald Oliver) is adorable, and will never lack for company. He was a little unsure of Josh to begin with, but now...


Also in amongst all of that, I had the usual kids after school run-around, and appointments for Josh. We had a 3 monthly check-in with the rehab team, who followed up regarding Joeys recent botox and discussed the plan going forward, including our decision to commence Hyperbaric Oxygen Treatment. The next meeting with rehab will now be in 6 months. Also had another meeting with the paediatrician, who oversees everything that happens. She is quite supportive of us (that is, as much as medically possible), and is pleased about Joshy's general well-being. She checked his chest, and there are no "crackles" which is a good thing regarding imminent chest infections.

Medically, doctors are not encouraging regarding HBOT, but as there are no other real options, simply "making Josh comfortable" is not the right decision for us.

Media

On behalf of Josh, Id like thank Kyle Sandilands for his complete personally pledged amount received today.

Please keep in mind, especially if you are a new reader of this bog, that this is only my side of things, and even then I don't and can not write everything for various reasons, especially where other people are concerned.

Happy 4th Birthday Josh

I stayed up til 12.01 this morning just so I could give Josh his first birthday kiss. He was actually born around 12.35am, but I couldn't stay awake any longer!

Kayla slept with me on my single mattress on the floor of Joshy's room, so I didn't have a good nights sleep. Josh was also a bit noisy (phlegm), and I was up to him a couple of times.

We had a BBQ and a small gathering for Joshy's birthday. The weather was fantastic and the day was pretty cruisy. For numerous reasons, the least being Johsy's condition, I had a bit of a hard time. But, as usual, I got through. Josh however decided that today was best for cat-napping. I made a Nigella Lawson honey chocolate cake, and because yellow, and bumblebees was a bit of a Joey thing, I thought this cake would be perfect! I didn't have the right cake pan, so the shape came out a little worse for wear, but still tasted yummy. And those bees are cwute.









Later, my two biggest girls helped me make a couple of trips to the new home, and we are spending our first night there officially tonight! I'll then spend the next 2 days finalising bits and pieces, and will have my 3 littlest kidlets Wednesday through Saturday each week.

Love you Joey. You're such a big, strong boy. I'm so proud of you. xx

TV interview

Did a TV interview early last week with JF regarding Josh...

I can be good at conversing on the phone, and am good at writing my ideas. I am not good at face to face interviews.

I may have come across looking a tad ungrateful about donations received through a certain media platform, but in essence that's not what we wanted the story to be like. I wont know til I see the piece tomorrow (Monday 17th August).

This blog wasn't permitted to be advertised for this story (gee, wonder who's decision that was?) but if you've happened to come across this blog because of the story shown on channel 9 (or even if you're here for some other reason), please know that I am truly grateful for everything received for Joshy and the family.

Briefly...

Signed lease on our new house on Tuesday. Only 10 minutes or so from where we currently live. Whew! finally!

Josh had his first dental appointment on Wednesday. JF took him for that, and I met up with them a little later as I got the kids off to school first, and we had other appointments at the hospital too. We had a nurse check Joeys PEG because it seemed a little sore (dried blood around edges) and a bit loose, so she checked the volume of water in the balloon (which is what actually keeps the PEG inside his tummy), and then took the hole PEG out, and put it back in again. Ick! Also saw the progress of our new suction bag which the infamous resident sewer is making. Looks great, and will be washable and will conceal the unit quite well while still allowing easy access to all the bits needed.

Later, I grabbed a few cleaning supplies and spent a few hours cleaning the new place, and Leesa came to help. Took over some boxes in the afternoon, took Kayla along to her Reconciliation meeting at a neighbours, and then took her to the new house to have a sticky beak.

Thursday, we were back to the hospital to pick up the hip brace which Joshy should wear for the bulk of the day. It gives him a good thigh stretch, but also keeps his hips aligned. We then met with the neurologist who we have seen since the start, and we discussed a number of things with him including hyperbaric oxygen treatment (HBOT) which Ill talk about some other 60 seconds.

Moving House

The process of moving house has been going on for 3 months. For various reasons, I have gone through the Department of Housing, and after a mountain of paperwork, interviews, many phone calls and a truckload of patience, they accepted my application. As expected, a suitably modified home (for Joshy's needs) is not currently available, so I had to look in the private rental market, and the Department assists with the rent (and they also advised me the maximum rent payable that Im allowed to look for).

Looking for a home... What. A. Drama.

Ive only been looking at places within a few kilometres of where we currently live, or 10 or so minutes drive-time.

A few weeks ago, I found a place I liked almost immediately, and it was within walking distance of both the primary and high school where the kids currently attend. 5 bedrooms, great size yard, undercover areas, heaps of storage, spas (great therapy for Josh), etc. Only problem was that there were stairs to get in to the main area of the house; about 15 all up. We have stairs where we are now, and while Josh is little, this isn't too much of a problem (carrying him up and down), but I have to think long-term as well. The other requirement from the Department is that Joshy's OT assesses the suitability of the house, and after she had a look, the stairs were her only concern too. For whatever reason, even though the agent was happy with my application, the landlord wasn't.

Homes within the price range were either 2 storey, or had no garage (a must), or too far (from JF), or the right amount of bedrooms with no other living areas like a rumpus (for Joshy's equipment and exercising), or were short-term leases etc. And I really wanted somewhere that would allow a pet, although I had explained to the kids that if a home came up that didn't allow a pet, but everything else was suitable, Id still apply for the home.

I looked at a few homes anyway, to get an idea of what was out there, and because sometimes photos tell a different story.

I looked at a home about 12 minutes away, and it seemed almost perfect. Single level, culdesac, fenced pool, big living areas, allowed pets. And although the OT approved, there was just something not quite right, and I couldn't put my finger on it. Perhaps travelling across two of the Hills District's busiest roads may have had something to do with it...

I inspected another home that I had noticed every time I did an Internet search, but didn't initially look at because I thought it was just a little too far (according to Google Maps though, this house is 1.5 kilometres closer than the other property). I looked, and then arranged for the OT again, who said it was fine also. It would be highly unlikely to find a bathroom large enough to accommodate Joshy's shower chair, and it only has 4 bedrooms which are a little squishy, but they're the only downfalls. The house has a double garage, solar heated pool (fully fenced), a yard easy for me to maintain, freshly painted and more modern, and allows a doggy. And its only a few streets away from friends.

I applied for it, and spent most of Friday making calls, filling out more forms, emailing, and at the estate agents. But...I got it! If all goes to plan (hmm, perhaps Ive jinxed myself?), I sign the lease Monday, Tuesday at the latest, and we can move in.

Whew. Thats one less thing to worry about.

Swimming Lessons

About a year and a half ago, I did take Kane and Josh to swimming lessons a few times. Kane was old enough to go with an instructor without me, while for Josh, I had to be in the water with him and play the games etc.

The classes were booked at a lesson a week for 4 weeks, and we attended the same class time for two months. After that, due to the lack of participants for that time, I think it was Joshy's class time that was moved or cancelled. That meant that Kane would have to sit on the side and watch, and hopefully stay there, while I was in the water with Josh. Josh and I didn't go to lessons again. Kane went a few more times, and then, not sure why, we stopped going for him too.

A few weeks ago, Kane had an assessment to re-commence swimming lessons. He began his classes last Thursday, in which I hear he did really well. I took him today, and he looked like he was really trying hard, but having a fun time.

Josh slept most of today, and was asleep in his stroller poolside, so to passers-by he just looked like a regular knackered kid.

Inside though I was screaming "Oh! Its wonderful that you have your kids at swimming lessons! Its so important!" Its never too early to begin swimming lessons for your kids.

Hydrotherapy

Josh had his first session of hydrotherapy at the kids hospital today with his PT and JF. Little monkey slept pretty much the whole time! Could it have been something to do with the temperature of the water being something like 32 degrees (or is it 34 degrees?). Maybe it was because silly mummy grabbed "pullup" pants out of the cupboard and put those on Josh, instead of "Little Swimmers" and the weight of the full nappy tired him out? Or perhaps the whole experience was just super relaxing, and he felt no need to wake up.

Hmmm.

His PT had been concerned that Joey would require suctioning at least a few times during his session, but I think I did it just the once.

Next school hols, we're going to bring the kids in too, and they'll be shown ways to play with Josh in the pool. Hopefully, whether its for that or his next hydro session, he'll be awake...

6 months today

The last 6 months;

the shortest, the longest, and definitely the most painful time of my life.