Basic Facts

I am trying to inspire DD to feel motivated to learn all her basic facts without making her bored or turning her off. I know, I am a teacher and get stuck, at times, thinking like a teacher. So my readers out there, what can you recommend some great ways to inspire an 8 year old to rote learn these necessary facts.

Autumn

Don't you love it...Autumn that is. Here in New Zealand autumn is officially here. I love the crisp clear days and the new life that I can see in the garden, that is excluding all those weeds that now have appeared. I love the changing colours of the large trees in my front yard. So I thought this Autumn I would take one photo a week of the Liquid Amber tree in my yard. I cant wait to see the trees leaves change from green through all the warm reds, oranges and yellows through to all the leaves falling off. I will try and post a photo a week starting tomorrow.

Big Boys Toys

You guessed it. I spent the day visiting a big boys toys display.....a military airshow. 50,000 people, about 20,000 cars, three children and DH don't make for a happy me.

It was a fantastically warm and sunny autumn day which was a bonus as it could have been much worse being autumn. The planes made all the right noises and demonstrated the appropriate amount of speed for DH and DS2 to be suitably impressed. DS1 whinged a great portion of the afternoon because he wanted a ride on something, looking was not good enough and DD and I followed along.

The hardest part of the the day probably was being stuck in the traffic jams for about 3 hours in total. I think coming home we traveling about 10m in the first hour. Yes with military precision traffic was smoothly funneled out of the two exits. Of course I say this with sarcasm as I am now really tired and cant wait to put my feet up.

Here is a photo of the slow planes, not sure what they are, but they were slow enough for me to use my point and snap camera.



and the family looking skyward

Cars

I wonder how we got to the stage where cars are just so essential to the everyday working of our life. This clearly came into focus this week when one of ours had to go to the garage for a major repair and the other got a flat tyre. These things always need $$$$ to be fixed. I guess that I am just going need to find some more days of work.

No car, children and work do not fit nicely together in our house.

I wonder what next week will throw at me.

P365 Weeks 9 and 10

Here are my next two LO's for P365

Week 9



Credits background from Delightful kit from WW, pins, staples and note paper from Life 365 kit from WW. Font is University Roman LET

Week 10



Credits. staples, paint splats, alpha from PM kit by Flerg, background from Delightful kit from WW, frame from Life 365 Hodge Podge 1 from WW, tape from Signature Tape pack from WW, sun from Weather kit from WW, Fonts are Depressionist Three and Tamara's printing (my own hand)

Just venting......

DS1 needed to have blood accessed, from the port a cath he has, today. Unfortunately his new community nurse had three tries and couldn't access any blood.

Grrrrr....now I have to take him into Starship hospital so the fabulous ladies at Day Stay can do it. Hopefully they will not need to poke his site 3 times with a 3 cm needle. Thankfully his site is quarterised as this is a monthly occurrance. (Note to self....maybe photo of the day is in here somewhere)

Phew...I feel better now that has been said.

I hope you all have a great day.

Medicine Time

I have been prompted to record some more things about everyday life. I know that I have just blogged about Hayden but I guess the last part of the story is the medication.

Hayden is now on a number of medications as I mentioned in my previous post. It is a very intensive regime, is time consuming and tiring for me.

His daily routine goes like this. Up at 6.15am to start the very slow hydration and food process. It takes about 50 minutes to eat 1/2 a weet-bix and have about 100ml milk and 100ml water. I hear you all saying why does it take so long? Well in short if he eats at a 'normal' pace he will vomit everything back up so steady and slow seems to overcome this. Not only this if he does not have food in his stomach then he will not be able to tolerate the medication that is to come next and the result with be the same. It is a vicious cycle because without the medication to come, over time, Hayden's health will go into decline and his behaviour will be unmanageable. Just try being in my shoes and working this out....2 years it took to come up with this formula. So breakfast involves up at 6.15am and finished at 8.10am. Not running around, brushing teeth etch because that also causes nausea.

Anyway the rest of the day involves continual and controlled hydration. The medication takes only moments but does mean I get up in the middle of the night. Thankfully Hayden has a Mckey button which is like a ear piercing to his stomach. The medication goes straight in here so in the middle of the night he does not need to be woken up.

Here is Hayden doing his morning medication. He looks happy enough here but that is not always the case.



Credits. Forest Whispers by Lindsay Jane. Fonts are Underwood 1913 and Park Avenue BT

Part of the medication routine is also hydration. Hayden's kidneys just leek fluid like there was tomorrow. So each day he needs to have a minimum of 2 litres of liquid. It is never ending as his eyes also require medication. Roughly 5 or 6 times a day eye drops need to be administered to avoid photo sensitivity and damage to the cornea.

But Why?

I got thinking about the things that children say to us. Sometimes the funny, sometimes the sharp and sometimes the inquisitive. This all got me thinking about DS2. He has just turned 5 and 2008 had a favourite phrase....But why? Now I know these two words are fairly harmless but have you ever sat in the car with chatty 4 year old whose favourite thing to ask is but why? But why do I need to do it? But why should I? But why .....it can be relentless some days.


As a mother I have tried to think about what questions DS2 is really asking but reality is he really is just asking But Why? Maybe this year will bring a new question involving a few more words. I look forward to blogging about that.

Here is the LO I made all about this.

But Why?



Credits; Resolve Kit by Audrea Neal, Classic Cardstock Neutral by Emily Powers. Fonts are typewriter a602 and Vaguely Repulsive

Diagnosis and Recovery.

So here I am and back to the story. I should add here that I tell this story not because I spend my days living in the past thinking about what might have been, or even what if... but because I know this story needs to told for my other children.

So here we are in Auckland, New Zealand after a nine hour flight, met by an ambulance on the tarmac and taken directly to Starship Hospital. This is New Zealand primary children's hospital. Thankfully we arrive with detailed discharge notes. Brunei did not have all the facilities that developed nations have at their fingertips but their paperwork was as good as they could do with the resources available to them.

We arrive back and the situation is very unknown. What we do know is that the gastro bug was the stimulus for the system failures that occurred.

Then started the battery of tests on electrolytes, scans on this that and the other part of the anatomy and visits for the widest range of Consultants you can think of. Renal, ophthalmology, orthopedics, cardiology, radiology, neurology, etc etc etc. In fact their were so many I can not remember them all.

Hayden status was still up and down but nothing was life threatening any more. He was, however unable to tolerate liquid food via a nasal gastric tube unless it was partially digested for him. He required physiotherapy for the contractions he had and was still non verbal and had no gross motor skills at all. He had a number of deep bed sores and a very deep wound where the IV had tissued. This looked like it needed plastic surgery. He still had no eyesight.

The kidney condition Renal Tubular Acidosis was suggested in his notes Brunei and was confirmed but the cause of this required blood to be sent to Australia for analysis.

In the mean time the MRI scan came back with stunning results. Hayden's brain had been damaged significantly. It showed a unique pattern and we were told acute atrophy to the brain and the likely outcome for Hayden would be no ability to walk or talk again. How devastating this was. Our baby, who we took to hospital with a gastro bug was never going to recover or even get close to recovering. Life was changed. I don't know at this stage how many boxes of tissues I had used then, but many. Unfortunately DH had had to go back to work and was sitting in Brunei when we got this news. The lovely staff at Starship rang him and Karen our friend the nurse was with him with when he got the news

About the same time Ophthalmology had confirmed Hayden as probably having a condition called Cystinosis. Blood test results latter confirmed this.

By now the list of things wrong with Hayden had become Cystinosis which has a secondary kidney condition, renal tubular acidosis and the brain injury. Cystinosis is an incurable metabolic condition. It can be managed with a very intensive drug regime. It affects the major organs starting with the kidney. It is quite rare.

In the LO below I have tried to show the stages of recovery that took place. Firstly the drugs for Cystinosis are very acidic and caused him a great deal of discomfort and vomiting. This meant he was unable to participate in physiotherapy as he was always feeling unwell.

After two months in Starship Hospital Hayden was moved to Wilson House. It is a center for rehabilitation. He was resident there. Thankfully recovery surpassed the initial end point we were given and his eye site recovered, contractions started to stretch out, he wanted to walk and crawl. He had to learn to eat (remind me about food and Cystinotic people. It is another blog entry all together), etc etc etc. You think of it, it has to be relearnt.

Thankfully Hayden's eyesight made a full recovery. He did remember how to walk and run with no impediments, his ability to eat returned and his speech was slowly returning. He returned home on 19 July 2006

Here is a LO with photos of important moments in Haydens recovery.



Credits. The kit is Pool Party by Lindsay Jane Designs. Font is Papyrus and Report 1949

Unfortunately we now know he has been left with a good list of things that a wrong with him; cystinosis, renal tubular acidosis, significant cognitive delay, ADHD, speech delay and significant seizures.

His medication supply is plentiful as electrolytes need replacing, an oral drug for cystinosis as well as eye drops, anti seizure medication and medication for ADHD. Nutritional support is given also. Hayden has a mckey button and a port a cath.

Here is the photo of it all



In closing, on the down moments I try and remind myself that there is always someone worse off than me.

It is that time of the Year.

It is that time of the year when the world for me is bought back into sharp focus. It is the time when I remember what was and what might have been.

Of course for those of you who have not seen my sons story you have no idea what I am talking about. So I thought on the third anniversary of the life changing even I thought that it was about to time to really record this and maybe put a layout or two in to illustrate things a little more. You will have to excuse my rambling though.

Anyway, on with the story. I really sit here with tears welling in my eyes.

On 22 February 2006 DH and I took our son Hayden, 3 1/4 years old, into Bandar Seri Begawan Hospital, that's in Brunei, as he had had a case of vomiting for 7 days. We had taken him to a doctor twice during this week but really he had got worse and certainly no better. It was a gastro bug he had caught. At this stage he had lost a lot of weight, was very shaky when walking and somewhat incoherent when he was speaking.

At at least 20% dehydrated and electrolytes severely out of whack, he was hooked up to IV fluids. He was to spend the night in hospital. Now you have to use your imagination at this stage. Brunei is a developing nation and the hospital system is in a developing stage too. So my night in hospital with Hayden was one on a mattress on the floor. To cut this part of the story short the night involved repeated blood tests, replacement of potassium, sodium and general fluids for hydration. As the night went on Hayden got less responsive and to me it seemed sicker not any better.

In the morning DH and I changed shifts. The decision was made to move Hayden to PICU. No sooner had I made it home and I got a phone call to say that Hayden's heart had stopped beating briefly, he had been resuscitated and was now on a ventilator. Luckily for Hayden a young and newly trained Cardiac Pediatrician was at his bedside when all this took place. Thanks you so much to this Doctor.

After making a few arrangements I somehow drove to the hospital to find my son hooked up to so many machines you cant even begin to image it. It was like a Christmas tree with lights flashing, machines dinging and in general it was a huge stunned moment for me. (Just a moment while I wipe the tears from my eyes.)

Now Hayden was none responsive, had no gross motor skills, no language, ventilated but conscious we think and on what felt like a pharmacy worth of medication. He was medicated for continual fluid loss, electrolytic imbalance, kidney failure, extremely low blood pressure etc etc I wont bore you with the rest.

We had no idea what was going on. Between the continual blood tests and the CT scan we were in the dark. Luckily for us a Kiwi friend, who was also in Brunei, was ICU nurse. She was by our side, asking the great questions for us and generally supporting us. Our friend sat with me for 3 nights while Hayden's life hung in the balance. It was really touch and go. I so appreciate the support given to us at this stage. So Karen if you ever get to read this thank you so much from the bottom of my heart.

After 5 days in PICU we were told by the head of Pediatrics that they had no idea what was wrong with Hayden but said he needed to be taken back to New Zealand when he was stable. By now he was off the ventilator but had his eyelids taped down as they would not shut, his arms secured gently down and still attached to many of the same machines.

Hayden had become a pin cushion. Not a vein was left untapped. Eventually a central line was put in, but bed sores were becoming evident and an IV site had tissued badly.

21 days later with the support of Karen, my sister who is in the medical profession we put Hayden on a commercial flight back to New Zealand where the long pathway to discovering what was wrong with Hayden, his prognosis and rehab. I will leave that part of the story for tomorrow.

I have used this journalling from this blog post on this page.



Credits Essence of Cream kit by Lindsay Jane Designs. The font is Papyrus and bush is from Obsidian Dawn.