Merry Christmas

As it is for most people, Christmas was a very busy event.  I loved spending time with family and friends in the days leading up to Christmas including Christmas Eve.

Paris, Kayla and Kane each wrote a letter to Santa, and without knowing what each other had written, there was one thing the same on each list: for Josh to get better.

My wonderul patient kids, who woke me at 6am to let me know Santa had been, waited for 1/2 hour while I did Joshy's normal routine of feeding, changing nappy, splinting and nebulising, but I think that only added to the excitment of guessing what was inside each parcel....

From about 10.30am Christmas Day, I was childless.  I spent a few hours with my immediate family, which was lovely, but I did feel rather melancoly.  Arriving home later in the afternoon, I wobbled a little emotionally, but I kept busy (the house was a hurricane swept mess of paper, boxes and mess which needed to be cleaned up), and I got through.

The next few days were also busy, with family gatherings, but with all my kids.  Loved it!  On a personal family level, there were some firsts, fantastic firsts, that have given me a warm feeling...

I hope you each had a lovely Christmas too.

Amazing Kids

Through this year's trials and tribulations, my 4 other children have managed to come up trumps!  And I'm very proud of them!  So, ah-hem, here's my toot.

My eldest, who likes to remind me shes now only 6 months away from 15, remains in the top class for her main subjects next year. Admittedly, shes one of those lucky people who doesn't have to study, but whoa! if she did...!  And she must be the only kid who made $50 worth of mobile-phone credit last a whole year!

My 12 year old actually excelled this year at school!  She received a Silver Award at an awards ceremony, recognising she came first in a subject, and 2nd in at least 2 other subjects!  Ever aware of sibling rivalry, she was pleased she got an award when her big sister didn't (for the first time ever!).

And they both auditioned and received parts in next years school musical.  That will make the 4th year for Jamiela with a more important role  each year, and for Paris (the 12yo), she was the only one in Year 7 to get a part at all...

Kayla was a part of the school dance group, where they performed at different dance festivals, which is great considering she has not danced previously.  Next year, she will be in the school band, and has been allocated the saxophone, and again, coming from a non-musical background (does mummy singing badly along with the radio count?), I think this is a wonderful achievement, and know it will provide her with many skills.  Just need to find some sound proof wall padding... just joking. :-)   She constantly amazes me with her craftiness, and creativity, creating something out of nothing.

Mister 5 will continue on to Year One next year, and that in itself is enough to make me proud. :-)  He has been wonderful in trying new foods, and can be very mature in deciding if he likes something or not.  He has also been wonderful in learning to find solutions for different problems, for example, if he is unable to locate a particular toy to either search in other places, or use something else instead.

I have amazing kids, and I {heart} all 5 of them very much.

Car

After one too many visits from the NRMA and trips to the mechanic, the time had long since passed to purchase a new car...

Armed with a list of car yards with advertised wheelchair modified vehicles, and other places which looked promising, my dad and I took the bull by the horns last Sunday, and started our search down Auto Alley.  I like cars; I just don't like looking through a gazillion of them, so while we had a plan, I was not looking forward to the search.

But wouldn't you know it?  Within minutes, after dads eagle eye spotting a potential vehicle, we found a car!  (Actually, we drove past it, and it actually took almost 10 minutes to get back to it because of the traffic, parking etc; I had told dad not to worry about going back to look at it!  Oops!).

We took her for a drive, and while dad was happy with how she drove,  I was impressed with the space and bits and pieces in the car.  Okay, the fact the car actually drove without problems was a big plus for me too!  :-)  We discussed the pros and cons, and once Id decided I was happy to proceed, dad "did the deal" (which was entertaining in itself) regarding price, inclusions, warranties etc.

I picked my newest baby up a few days later.  Its a Hyundai Trajet, only a few years old.  While it isn't modified for a wheelchair, I could have some kind of conversion done at a later date, and for now, Josh is light enough for me to lift in to his seat.  With my old car I had to step up on the outside step, balance myself with my elbows, and maneuver Josh at the same time.  Now I can just put him straight in.  there's plenty of room to move (more than the Pajero) and yet its a less bulky car.

And, best of all, it actually drives.  :-)

I have an Otto Bok paediatric car seat, kindly given to me by Jo-ann and Michael from the Samuel Morris Foundation, which of course needed to be fitted by an accredited qualified person, so I called Brian from The Capsule King (who had installed it in to my other car), and who I highly recommend. :-)

School

A few weeks ago I made an application through our local school for Josh to be enrolled in a special needs school, and after the supporting reports and documents etc were obtained, the paperwork was submitted. I received a call last week from a local (special) school offering Josh a place with them, which came as a surprise because we hadn't yet received our own letter of confirmation or offer of placement. 

Things felt somewhat rushed, as we looked through the school 2 days later and more paperwork for Joshy's enrolment was meant to be submitted. 

We instead took a good look around the school, and have been speaking to various departments and people, and we'll take a couple of weeks with the paperwork, and be sure we're happy to proceed.  It was great to see the set up, and the equipment within the rooms.  This school also has a hydrotherapy pool, and I would be able to come and help out with that (which would mean Jojo would get more time in the water!).

The biggest issue is that they initially expected Josh would attend full time (5 days a week from 9 til 3pm).  Not only is that a huge step; its more like a gigantic leap! It's a combination of things; not being ready to let Josh go into the care of others for that length of time, he still has appointments through the hospital etc that we attend, etc, as well as the other therapies or treatments that he may receive throughout the day needing to be rescheduled.

There is a program called Early Intervention, where kids can go for a few hours a couple of days a week, but the kids that are involved are generally more able to interact somehow...

Legally, all children are required to attend school fulltime by the age of 6.  We could just not send Josh for another year or so, but I feel that the interaction and stimulation will be beneficial.

We have since been told that Josh attending part time should be okay (with the goal being that eventually he would attend full time).

Its a daunting yet exciting process...

Weight

Cant believe its been 2 weeks since Ive updated.  And it sure has been busy!

We had noticed Josh seemed to have lost weight, and a few other people had noticed also... I contacted the dietician and we started Josh on a modified formula diet, with the goal being an gradual increase in weight.  Just 7 days ago Jojo weighed 16.9 kg, and he only weighed 200gm less than that back in April.  Today, Im pleased to say he weighs 17.2kg.  :-)

Wednesday Wrap-up

Josh returned from Melbourne Sunday afternoon.  While in Melbourne he started on 2 hour blocks in the Oxygen tank, twice a day, and built up to 3 hours twice daily, over the 4 days he was in Melbourne.  In total he did 20 hours, so together with the last lot of HBOT, that's 40 hours in total.  The goal is to do at least 200 hours... And as I wasn't there, that's about all I can tell you.

Josh stayed with me Sunday afternoon through to Tuesday morning.  Josh is "well", though, interestingly, he seems to have a bit of a high temperature when he wakes up, and it drops quite low, often around 34.? (celcius) when he is sleeping.

We had a followup appointment with the respiratory doctor today, who provided some feedback on the recent sleep study for Josh.  Overall, his sleeping is quite good.  He does miss a couple of breaths, however has good lengthy periods of REM.  He could use CPAP whenever he sleeps, but the Doctor doesn't think Josh has to use it, and, since the decision is ours, we've decided not to use that for now.

We also will be stopping the antibiotic we've been administering via the nebuliser for a while; it was given through the neb to help keep the bug psuedomonas at bay.  We'll take a sample of Joshy's sputum next week which they'll test to see how dormant the bug is, and reassess.

I had a chuckle when the Doctor wanted to book Josh in for another sleep study, a year from now, and he asked me what night would be best!  I dont know what Im doing in the next few days sometimes, let alone in a year! :-)

Comments?

I invite anyone who reads this blog, "professionals" or laymen, to contact me direct if you have any comments, opinions or ideas regarding what you read here.

Uncle Toby's Big Splash Swimathon

The 4 kidlets and I went to Waves Leisure and Aquatic Centre this morning in support of the Swimathon that I talked about here.

It was a nice way to spend the morning; kids swimming and having fun.  We got to meet Cate Campbell (who is such a powerhouse swimmer!), and the kids received some Swimathon gear.  Melie did a few laps, and Paris did an amazing 40!

The goal was to collectively swim a total of 2009 laps in the 4 hour period, however, this was the total at 12pm!  What a great effort!

Apart from the support of a worthy cause, one of the most amazing things was the support for my Jojo.  A group of swimmers had Josh K on their bodies (see here and here).  Thank you!

This is the piece from the Hills Shire Times, and below is the article from Hills News.

  

 

Afternoon Tea

You know you have those days sometimes, when youre so busy, but at the end of the day, there's nothing much to show for it? Among other things, I was meant to meet up with some school friends for lunch, but instead, my car needed to be towed to the mechanic, and bla bla bla, there was my day gone.

This was the best thing I did all day: at Maccas, with babycinnos, cheesecakes and icecream with Kayla and Kane! Mmmm!

Kayla: poser!
Kane: what do you mean you dont drink cinnos through a straw?

Not. Swimming.

For a few weeks now Kane has resisted swimming lessons, but eventually, he swims. (Actually, even Kayla has not really wanted to go either...). But! Not today! There was just no way Kane would get in the water.


How do I explain why learning to swim is so important, without scaring him! Or should I be a bit soft, especially considering what they've been through this year? And then, conversely, its the very reason they need to swim! So, round and round it goes...

Melbourne

Josh was meant to leave for Melbourne for another round of HBOT Sunday morning, however the week before last he had high temperatures on and off, and then again on Friday, when I picked Josh up, he battled with temperatures again for the rest of the weekend except for when sleeping...

We saw our local GP yesterday to get his opinion... Josh had some bloods taken to check his white cell count etc, however since Joshy's temperature had stablised and been "normal" for 36 hours, Josh left for Melbourne early this morning anyway. I rang to get the results of the blood tests and they show that his white cell count is normal and so are the reds basically also! That just means that there is no obvious infection present just now, so treatment can go ahead for the next few days!