We in 7 number

I was out grocery shopping recently, and I heard a little boy say to his mum "we in number 12 mum", and the mum replied "we're in aisle number 12 are we? That's good, isn't it?  You're a clever boy."

Josh used to tell me what aisle we were in too.  I can hear him in my head so clearly.

"We in 7 number, mum". 

I know I'll never forget these special memories.

Good and Bad

Josh has been sleeping through the night all week!  Yay!  That has not happened in months! Not sure if school is helping him get in to a rhythm and routine, but whatever it is, I'm pleased!

Josh also got another award from school, for "looking when greeted".  The teachers say Josh is using his eyes a lot more, and its as though he recognises their voices now! 

That said, results came back  recently from a ceretec scan (basically a brain scan) which show no changes since his last scan.

During the week I had a rather lengthy and serious discussion with the Doctor we saw a few weeks ago regarding Joshy's legs and his high tone.  Quite honestly, his condition is very serious, and of course makes putting Josh into a car seat or wheelchair extremely difficult, because it is even becoming quite hard to bend him at the hips.  The options are a brace, botox or surgery.

A special brace which encourages bending at the knees will be made and fitted shortly (more detail on that some other 60 seconds).  If we see some improvement using this, we can just continue down that path.  The doctor will put forward his recommendation to use botox, however we have already been met with resistance from the head doctor about our using HBOT in conjunction with botox.  Added to that is that botox can only be administered in the body no less than 3 months apart, preferably 6. Josh last had botox in salivary glands on 5th February, just over a month ago.  Surgery is the absolute last resort, and even then we cant be made to choose this, however the procedure becomes more difficult as time goes on, due to changes in bone structure etc.  There is risk of bleeding especially from the blood vessels etc in the hips, which could then require a blood transfusion.  And, as Ive already mentioned, there are other risks such as being anesthetised, and contracting other infections.  This surgery is also irreversible, so if ever Josh could stand again (let alone walk), he would be unlikely to do so following this procedure.

Its very hard; no one wants their child to suffer.  How do we know what is best? How do I make the right decision?

Paint

Love love love! that Joshy gets to experience things at school, such as painting!  There is a "communications book" that goes between school and home where the teacher can provide a summary of what happened during the day, or ask questions etc, and vise-versa.  This book is covered with a painting Josh did.  And he did more painting today...  here's some evidence.  ;-)

School

Two days after receiving his wheelchair, Josh went to school, came home, and slept, and didn't wake for almost 4 days.  He did not have a temperature, and his secretions were minimal, but he just could not be roused from sleep.  We decided to send him to school on the Friday anyway, because if anything would wake him, that would, however we received a call before the end of the day, concerned about his erratic breathing and the blue-grey colour of his skin. (He woke briefly when putting him in to the car Friday morning, and when I put him in to the bath on Saturday, trialling a new spa mat I bought).

By the time Josh came back to my place that evening, his breathing seemed better, but because he had not woken, I took him to our GP (recommended by a friend who's son has CP). I'd spoken with Joshy's respiratory doctor the day before, who suggested we commence a broad spectrum antibiotic, which the GP then scripted.  That wasn't started til Sunday however, and by Monday evening, when Josh was with me again, he at least had his eyes open.  Spiking temperatures then were a concern, however this will always be.

We're not sure what caused this.  Sometimes, receiving botox (as he did a few weeks ago), can cause problems, but probably not this length of time afterward.  Perhaps he aspirated? Maybe its "just one of those things"?

Thankfully, Wednesday and Friday Josh went to school, alert the whole time, and fast asleep in his car seat within 5 minutes of driving! :-)

And, my clever boy received his first award.

Leg Surgery

We met with an orthopedic surgeon to discuss our options regarding Joshy's stiffness, particularly in his legs, which has been of increasing concern since around October last year.

I was very happy with the doctor we saw, not only because of his thoroughness, but also how proactive he was when we met.  In a collaborative effort, what started out as a simple meeting, ended with a pre-preadmission clinic for anesthetic for leg surgery (that is, we saw an anesthetist who determined whether Josh would be able to withstand being anesthetised for the duration of the 2-3 hour operation. We will see that doctor again just prior to surgery).

Use of botox was also discussed, however it was decided that releasing certain muscles and tendons would provide the best outcome.  It all sounds rather gruesome, and I was handed a tissue when it was explained what needed to be done.  An incision is made on the side of each knee, and on the underside of each thigh. (Medical terminology is "bilateral releases of the gluteus maximus, quadriceps releases +/- capsulotomy of the hip adductor releases). The surgery will enable Joshy's legs to bend, however it apparently does not guarantee that his legs will always be able to bend, even with continual exercise and knee bending.  In addition is the risk of anesthetic which can compromise his breathing during surgery, and the biggest is infection such as pneumonia, afterward.  I am in constant fear of Josh dislocating is knees, or someone knocking his feet and subsequently breaking something whenever he is in his wheelchair (such as at school for example).

We meet with the orthopedic doctor again in a few weeks and let him know of our decision.

Wheelchair

Today was madness.  With purpose.

An integral part of today was Josh (finally!) receiving his wheelchair and having it fitted.   He does look more comfy in there rather than his stroller, and his legs are a little more protected.  We couldve chosen black plus a colour, and we almost went with yellow, but decided just black was cool.  It also has an adjustable transparent tray, which will be great for activities!  Easy to manouever, disassemble and fold aswell!

School!

Josh started school Monday... once he entered the school he was instantly alert.  He apparently remained that way most of the day!

We hung around a little to go over care of Josh, but Im confident of the abilities of those involved with Josh during the day.  It was really hard, letting go though... I felt the tears pricking my eyes the whole time I was there, so I left as soon as the necessarys were done.

He'll return to school next week, to allow staff to receive more training on suctioning.

I'm so glad of this huge accomplishment for Josh, and look forward to positive outcomes for him. 

Sleeping that night was one of his best in a long time; he didn't wake til around 4.45am.

Busy Busy

Josh has been a busy boy the last couple of days!

We met with an orthopedic surgeon who specialises in the spine and scoliosis. Now that he has seen Josh, we will return in another month or so, and he can evaluate him in his wheelchair, which arrives soon.

It is difficult to place Josh in a position that supports him in all the right places.  I either lie him down on a mat (which has various massage settings) which is on top of a sun lounge, or on the floor, or ocassionally propped up on the lounge (although that is quite difficult).  And of course he has his adjustable bed, but he only uses that at night.  Laying Josh down is great for his spine because gravity is not pulling it down.  If he is seated, but is not supported properly around his hips and ribs for example, it can be damaging.  Laying down for long periods however, is not only boring, but is not good for the chest and staving off infections.  So, a balance is needed.  Joshy's spine is still flexible, which is good news.  The goal is to ward off any spinal operations, such as spinal fusion, for as long as possible, preferably until the age of 10.  The doctor was clear in saying to continue doing whatever we're doing, and as much as possible, but to not beat ourselves up over positioning, because further curvature of the spine may still occur regardless.  That doesn't mean I will become lax and just lay him any old way...

We decided to go ahead with enrolment of Josh at school, and from next week, Josh will start going Monday, Wednesday and Friday.  We met with his teacher, and support workers and staff who are all lovely.  I feel confident of their experience and ability.  Ive already been asked to help at the canteen, and also assist with changing other kids back into their school gear after hydrotherapy...

We requested transport for Josh to take him to and from school, as the hours are 9am to 3pm.  Not sure if that application will be accepted, but all my fingers and toes are crossed; with the other kids, its a logistical nightmare! 

My heart aches knowing he will in the care of someone other than me or his dad, but I am excited about Josh starting school; the whole time we were there, his eyes were wide open, and he was "looking" more.  I get teary-eyed thinking of the possibilities, and am so happy about the opportunities for experiences he will receive.

Ive decided to not have Kayla and Kane return to swimming lessons for a while, although Paris is still squad training, which we went to yesterday for the first time this year.  Later, we went to Band Induction, as Kayla will be playing the saxaphone in school band!  Yay Kayla!

And today, Josh received botox in to his salivary glands to help manage his secretions.  There are 5 or 6 injections just under his jaw on either side, which he received under general anesthetic.  We should notice the difference in 2-3 weeks, which should mean minimal suctioning, and possibily reduction of some medication.

This photo is while he was still zonked out in recovery.

Involved

We had a meeting scheduled the other day with one of the doctors involved in Joshy's care.  JF arrived earlier due to a mix up with the appointed time, apparently said what he had to say and left.  When I arrived 1/2 hour later, and he wasn't there, I met with the doctor and another support person anyway.

I deal with people -and situations for that matter - very differently than JF.  A person trying to understand may view me as agreeable, when I may actually be considering. I may look like I'm sitting on the fence, when perhaps I either have no strong opinion on the topic at hand, or I've seen the other side's point of view and Ive reconsidered my ideas.  I do have strong beliefs.  I know what I like and what I don't.  And if the need arises, I will make my thoughts clear.  Otherwise, I will be amiable, and listen. If I have to get angry to get what I want, then Ive gone about things the wrong way to begin with.

I listened to what was said at the meeting, and some information I am still considering.  Some I disagreed with, and made that fact perfectly clear.

Importantly, I did neglect to say however that I feel not enough is being done for Josh. Or rather our decisions, especially if they're "outside the box", are not supported. When we left hospital, I thought he would receive a regular physiotherapy session for example, which hasn't happened. Our decision to use HBOT is frowned upon.  The use of HBOT in conjunction with botox is most certainly not approved. An appointment for an orthopedic surgeon, who specialises in cerebral palsy and joint contractures (the high tone in Joshy's legs, for example) was made on our behalf, but for 7 months later. (Thankfully that has been brought forward to mid February).  We've repeatedly asked for more oral exercises, however because Josh doesn't make meaningful or purposeful mouth movements, they wont give us any until he has more mouth and jaw movement, whereas we think the opposite; why not exercise his mouth to encourage and develop what is there, and if nothing comes of it, at least we can say we tried to make it happen, rather than waited for it to happen.

Talking and networking with other families, it is clear that we're not the only ones who feel this way.  We have to become, in effect, our own case managers, and push for what we feel is best for our children.  Some of us just push harder than others, or we demand rather than compromise.  Hmmm, compromise is not really the right choice of word, because when we're talking about our kids health, nothing should be compromised. Im thinking more along the lines of "discussing and reaching an agreement, with tact, diplomacy and consideration with all parties involved".

Having said that, even if we don't agree with all of the decisions the medical profession may suggest, we do still need them for what they can do.  I also feel we should disclose anything we're doing, and everything we're giving Josh, and not just provide partial information because it may be more like what that doctor wants to know.  To reach the best decisions, all information should be provided, and to all involved in Josh's care.  I also need to be kept informed with what happens to my son, and there have been a number of occasions now, where Ive inadvertently "discovered" things (unrelated to medical staff)...

And I don't need to act like a petulant child to get what I want.

A year...

It's a year today Josh had his accident.

In many ways, time has dragged.  And it has flown by.

Some families who's child survives a near-drowning apparently celebrate it.  They choose to remember the day of the ND as a kind of re-birthing, when their "new" child joined their family.  I acknowledge that the old Josh is forever gone, but I cant exactly celebrate this version of him.  Without doubt, I am grateful Josh is still with us, however I would obviously choose a different, much more engaging and fulfilling life than this for him.

Having said that, you do what you need to, to get through each day, each week, each month.  If celebrating the arrival of a different same child is what a particular family needs to do, I certainly don't condemn that.  Its simply not how I choose to remember today.

I have kept busy and have purposely kept the lingering thoughts that are always on the outer edges of my mind, away.  But obviously I live with reminders everyday. 


Toward the end of the day, I did light a special candle, and my 2 big girls and I had a little cuddle, and they gave Josh an extra kiss and had a little chat, but it felt unnatural. Forced. As if we had to do something.


Yes, today is somewhat harder, because what happened is reinforced, but mostly for me, today is simply a date, and another cross on my calendar to note we got through.

Thank you to every one who called and / or and left messages. x