Thursday, April 9, 2009


The last few days have been exceptionally busy...

Tuesday, the Rehabilitation Team came by, and it was suggested that Josh be given some botox in to a couple of key areas, to help loosen his muscles. There was an available time that afternoon, so after discussing it, we agreed to go ahead with that. The botox was injected into the left side of Joshy's neck, which will hopefully reduce the stiffness and his wanting to pull his head to the right. Botox was also injected in to areas around his shoulder, and in to his calves to help his feet.

We also had another group meeting on Tuesday, but that didn't go for long, partly because of the time for Joshy's botox procedure overlapping with the meeting. We mainly talked about the steps required to enable Josh to come home. There's still a lot to be done. Modifications in the kids bathroom need to be finished, as well as moving things around at home in general, and getting Joshy's room ready. Then there is the equipment Josh will need; wheelchair, car seat, bed and mattress etc.

The other thing I mostly concerned about is the support we will be entitled to and are likely to receive once we do go home. The relevant people are still trying to find that out, but I know how tough it will be.

I've said before, and I'll say it again; everything takes so long! The OT is in discussion with the builders about requirements for the modifications. Things need to be done a certain way, or else anyone else that comes to care for Josh (as an example) may not be "allowed" to, due to OH & S requirements.

I was meant to go home early on Wednesday, to just have some time at home by myself, but it ended up being one of the busiest days. We got to trial a couple of potential wheelchairs for Josh, and borrowed the one we liked for a few hours. We also looked at some more shower chairs. Later that afternoon, a bed with air mattress was delivered to Josh's room to trial. It looks like a regular bed, with a light wood grain finish, but has all the bells and whistles of a top hospital bed, such as being repositional and adjustable, and a swiper key lock. We have been listing the pros and cons of the bed, but would definately like to try another bed.

Final plans are also underway to enable our stay at Bear Cottage next week to happen, and go smoothly. There's a bit of confusion as to what day we leave, how long we're there for, and even how we get there and back, so considering we are supposed to go next Thursday, someone had better sort it out...

By this evening, I had only been home for around 8 hours in 4 days... Kayla and Kane were picked up from school early (after their Easter Hat Parade), and not long after I got back home with them from the hospital, we had a planned visit from the Social Worker and Play Therapist, as I'm concerned about a couple of things we've noticed, like crying too readily, and anger. Nothing really came up in Kane's session, and I was not surprised by what Kayla revealed in her drawings and writing during her session.

Briefly, a couple of other things that happened this week:

* Joshy's PICC (long line) was removed from his right arm, but now that is hard to bend (at the elbow). His left arm however, is constantly more bent, perhaps due to that shoulder problem, and we have to stretch that out.

* Josh now only receives bolus feeds; 200ml of Pediasure, six times a day.

* A sputum sample was again taken the other day, and it reveals that staphylococcus aureus is again or still present, and is on antibiotics.

* Have received some lovely gifts by unknown people; a red, black and white farm animal mobile (hand made and painted), a visit from a lady who read about us in the paper (and a generous donation), and a Wiggles DVD and some things from another Grandma who rang (also after the newspaper article).

* An amazingly generous donation of Easter goodies, gift cards and loads of fun stuff for the kids.

Thank you. xx

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