Joshua's Jabber - aka Blog


Joshua is now 3!

posted 12 Mar 2013, 08:18 by Tara Haroon

I've often been acused of babying Joshua, and I guess for a long time I've thought of him as a baby.  But turning 3, 3?, 3!, <3  Well he's no longer the baby but a toddler - sadly without a toddle, but he has quite a temper and is very good a shouting a his us all when frustrated. 
 
In typical Haroon insanity I think it right I share this madness with you
I just love the bum wiggle!

Epilepsy Sucks!

posted 27 Nov 2012, 05:47 by Tara Haroon

Since Joshua was diagnosed with epilepsy at 11 months, we live in a constant fear of the changes and dangers that it brings.  Not only do the seizures carry high risks but the medications too.  We became all too aware over the past few weeks...
 
Joshua had an increased number of absenses and myoclonic clusters of seizures.  Many people felt that the amount he was having was having a detrimental effect on his learning.  With this in mind we discussed a new plan for Joshua with his Neurologist. This entailed weaning off of one of the Anti-Epilepsy drugs (AED's) and weaning onto another.  The transitions have to be slow and managed as changes can fire off new seizures and most AED's have a sedative effect which causes drowsiness.
 
The newest medication he was put on brought about a drastic change, not only in seizure type but also in Josh.  He could sleep for over 12 hours a day easily.
 
Then just over a week ago Joshua stopped eating or drinking. He was too tired to do anything.  He became floppy and just wanted to sleep.  After 2 days we took him to hospital and upon finding no virus or other explanation doctors knew that this was due to the medications.  He was doped.  It took 6 days for Josh to properly wake up and join us. 
 
After many discussions with his neurologist and the team at the hospital, we are clear in our expectations now.  Josh has a very uncontrollable form of epilepsy which means we can aim for seizure free but Josh will be a zombie or we can accept the seizures and have our happy, smiley, giggling, bouncy Josh who loves life.  Its a no brainer! 
 
Thinking back to my own ignorance in the world of epilepsy I thought that as long as you took your medication that all was perfect and that seizures were a result of medicine misuse.  I know I didn't begin to understand the complexities, settlements or agreements that have to be reached. 

A Very Intensive Week at Bobath

posted 18 Oct 2012, 09:19 by Tara Haroon

Just saw this in the draft folder, from June. I've really let the blog go! 

This has been a very hard week, for Josh and for all of us.  Bobath Week as we call it.  It means a lot of travelling back and forth to Finchley but it results in so much positive reinforcement and reminds us of how fantastic Josh is, who never gives up and is eager to learn.
 
He definately delighted his physiotherapist, Marie, who is astounded by how much he has acheived in just one week. It was very intensive and we were all aware that having a week meant a lot of work.  By the end of the week Joshua was tired and obviously had muscle fatigue but he was still smiling.
  • Improved head control - also understanding "Head Up" and "Head in the middle"
  • Improved arm tone - understanding "Hands Down" - tolerating his arms being held and touched.
  • Improved communication - using his voice to vocalise to request more play - using a switch to

We also had the opportunity to try using a head switch, a small switch that can be placed at the side of his head, which Josh can operate independantly, this will encourage him to bring his head back and centre. 

We even managed to discuss equipment like pushchairs, standing frames, lycra suits, thumb splints and i2i head support.
 
On Wednesday both Joshua's school physiotherapist and speach and language therapist attended so that recommendations can be taken into school and incorporated into his daily programes.
 
Productive does not even begin to cover it!
 

Always thinking

posted 4 Jun 2012, 09:50 by Tara Haroon

When we were told Joshua had PVL (Periventricular leukomalacia) which may lead to cerebral palsy and all of the conditions that go along with that we didn't realise we were going to become experts in positioning, movement and communication.  Over the past two years we have become lay-professional physiotherapists, occupational therapist, neurologists, nurses, visual impairment teachers and speech and language therapists.  Of course our expertise lies only with Joshua's conditions but in Joshua, we are experts.
 
So when Joshua is sitting in his new dinner chair and we can see his head dropping we are worried about head control and neck muscles shortening or lengthening. When he is in bed and brings his knees under him which causes a twisting in his spine we are worried about scoliosis. When he has a seizure we are worried that his epilepsy will change and become life threatening. There is always something to worry about.
 
Naturally when Joshua was diagnosed we refused to beleive it.  We thought it would be fine, he'll grow out of it.  We remember sitting in the Neo-Natologists office having a discussion about 'quality of life'.  Still disbelieving and not wanting to acknowledge it we renamed the doctor, Dr Evil (his name was Ebel).
 
Physiotherapy started when Joshua was 6 weeks old.  He was tiny, about 6lb and was just a regular baby.  A new baby, doing what new babies do.  Cry, feed, sleep and cry some more.  At first as milestones passed and Joshua wasn't reaching it we put that down to him being early, we believed that he would catch up. 
 
When we noticed Joshua wasn't tracking and following with his eyes was when we began to know that something wasn't right.  Our baby couldn't see.  Not with any consistency.  He has glimpses, he definately sees better in a darkened room that a bright one.
 
We are always grateful to the team of therapists who support Joshua.  Even when we thought it was unnecessary, we continued with the therapies, just in case.  Knowing that extra help can't hurt any child, we embraced it.  Boy did he need it.  We are so grateful to his physios who have worked to maintain range of movement and help teach us methods to reduce Joshua's tone.
 
We have learned more from Joshua about patience and love. that has definately kept us sane and kept us going, trying to learn as much as we can to give Joshua the best possible chance to learn as much as he can so he can reach his full potential.
 
People have also been a great source of inspiration and support.  We have had friends organising social fund raisers.  Friends who donated time and money to help Joshua receive extra therapy from Bobath. And friends who have participated in sponsored events, like swimming, running the marathon, walking and even a mad couple who currently seakyaking around the UK to raise money for Joshua.  We have amazing friends who show unwavering support and love for Joshua and give us strength and motivation.
 
Of course we have learned so much from Joshua's therapists, but one of the many benefits of Bobath is the intensity of each block.  Having physio every day during the week not only gives Joshua a chance to master a skill but it gives us the opportunity to learn how to hold, support and encourage good patterns.  We are his daily carers and it is crucial that we understand the benefits and risks of different activities.  We impart knowledge to others who support him but we have the skills and knowledge do that. 
 
We are back to the Bobath for a week block next week. I'll be sure to write up something about his progress.

Watch Joshua play with his Step by Step Switch

posted 15 Apr 2012, 04:18 by Tara Haroon

This is Joshua playing with his switch.  You can see how much he is concentrating to control his arm movement. 
 
These movements are definately more purposeful and consistent since his last block of therapy at Bobath.
 
 

West Ham Til I Die

posted 1 Apr 2012, 14:24 by Tara Haroon

I do believe that is the saying.  Let me tell you how the day went. 
 
Saturday the 31st March 2012, West Ham v Reading 3pm kick off.  Temperature 10c and cloudy (it's important you realise just how cold it was).
 
The collectors (aka Joshua's Friends) arrived at 12.45 and were ready to don their t-shirts and grab their buckets - gutted that we didn't get a picture of everybody, but to give you an idea... Don't they look fab?
Untitled 
 
I mentioned it was cold, well it really was, very, very cold.  We were all shivering and joked that we wasn't rattling the buckets but just shivering so much that they shook.  Not one person complained though, not one person stopped collecting, everyone kept smiling, chatting to the football fans and collecting those pennies. 
 
One fan donated a ticket (his girlfriend decided it was too cold to go watch a match) and another fan saw this going on and told us to go the cash sales gate.  Sure enough within around 5 minutes, eagle eyed Lulu spotted a single man and moved in.  He gave her £40 for the ticket. 
 
A few supporters came to share their experiences of caring for unique kids. 
 
David thought that when Karen Hardy was driving away from the stadium, she leant across her seat reaching for her purse. "Oh Yes?" David pondered.  At which point she excellerated very quickly and was gone. 
 
Best quote of the day from a particulary merry Hammer "Where's Joshua going?".
 
Sadly (as we are a house of Hammers) we lost 2:4 to Reading, but support (financial) continued after the game.
 
Owen managed to get some picture of the players wearing Joshua's wristbands (let me know if you want a band (always trying to up the sales)
 
 
I do hope that some of the supporters who took bands, perhaps the players and even Joshua's Friends (Phoebe, Nalan, Angela, Nikki, Mini, Lousie, Jess, Katie, Jacquie, Barry, Hayley, Michelle, Liz and Owen) who came out in support know that we greatly appreciated every thing they did, and every penny donated.  We ensure that every penny goes directly to Josh's therapies at Bobath, no admin or deductions what so ever.  Every volunteer is exactly that, each person gave up their time on a Saturday and stood (did I mention the freezing cold) in the cold. 
 
We don't want to forget all the behind the scenes help we received, especially West Ham United Football Club, who responded to our pleas for help, tolerated my questions and supported us during the day, Maggie and Paul who lent Josh the West Ham strip for his photoshoot, Lorraine and Dave created the t-shirt transfers, designed the fabulous new logo and drove from Brighton to deliver them and then there is the printer, he donated his time and resourses to print the bucket stickers. 
 
So, I hope you are as staggered as we to learn that we raised £1,181.28 - that is almost 1/3 of a block of treatment.  We were astonished and grateful, humbled and honoured to have been a part of it all.
 
THANK YOU xxx

2 Week Block is Complete!

posted 10 Mar 2012, 03:32 by Tara Haroon   [ updated 10 Mar 2012, 13:17 ]

I think we are all pleased that the block of treatment is finished.  No more back and forth to Finchley, no more organising who is picking kids up, no more exhustion for Josh.  But, now the work starts.  They have given us the tools now we must use them.
 
Some of the things we worked on
 
Dressing and Undressing
By doing this in a seated position it will encourage Joshua to be more aware of his body and help to straighten his arms.
 
Supported Sitting
New techniques to help with sitting positions, this will help his head and trunk control. The first picture shows Joshua sitting with a leg bent, this helps him to reduce the tightness in his arms and legs.
 
 
Drinking from an open cup
We were shown how to give Josh additional support around his jaw to help him bring his lips together.
 
Communication and Play
We were shown different ways of using Joshua's step by step switch for play.  We are encouraging more sounds, like m, b, and p and we are already being rewarded with more consistent responses. 
 
We also looked at seating, standing and reclining.
 
The two weeks were incredibly hard work for Josh.  By part way through week 2 he was exhusted.  He did perservre and do so well, he continued to keep becoming active in the play sessions.  He has been using muscles that he hasn't before, he is fighting against gravity and still he has a smile.  We are so proud of him.
 
 
Sitting with one leg bent helps Joshua reduce the tone (tightness) in his arms and legs.

At Bobath this week

posted 29 Feb 2012, 13:14 by Tara Haroon

It has been a good week so far.  Josh has received 3 days of therapy at the Bobath Centre for Children with Cerebral Palsy.  We are working hard to help Josh learn to reach forward to play with toys.  This is because the elbow flexors (that's biceps to you and me) are very tight.  
 
Try this - Flex your bicep and hold it for 30 seconds. I imagine that is how Joshua's arms feel most of the time.  But the good news is that he can relax them.  It is difficult and there are a number of factors that come into play.  Firstly, Josh becomes tight in his muscles because he feels unstable, secondly, he is cautious of his surroundings because of his visual impairment and then to cap it off he has seizures which cause his muscles to spasm and jerk.
 
Of course it is not purely his arms, he is unable to fully control any of his muscle groups.  The muscles fluctuate between too soft when he is happy and relaxed to too tight when he is excited or cross.
 
During the 2 week block he will be spending 5 days with the Speech and Language Therapist, who is trying to help Josh develop more sounds and become more active in his play.  Taking the lead, rather than sitting back and waiting for play to come to him.
 
It is going well, he is tolerating the sessions very well and enjoying the input. 

Children's Christmas Party

posted 6 Nov 2011, 08:56 by Tara Haroon

Ho Ho Ho                Ho Ho Ho        Ho Ho Ho        Ho Ho Ho
 
We are going to have so much fun at the children's Christmas Party which will be held at Our Lady and St. Catherine of Sienna Parish Hall, 177 Bow Road, London E3 2SG.
 
On Saturday 10 December 2-4pm
 
Special guest appearance by Father Christmas... He knows if you've been naughty or nice.
 
We will have party food, games and dances.  You can have your photo taken with Father Christmas in his grotto.
 
Please come along and support Joshua at this fun event. 
 
Tickets are £10 per child £5 per sibling
 
Please pay into Joshua's Just Giving page www.justgiving.co.uk/joshuas-journey remember to leave your name and state Christmas Party in the message.  Alternatively I will have tickets available at the Winter Fayre or at the school. 
 
 

Apologies for the absence

posted 22 Sep 2011, 08:21 by Tara Haroon

It has been a very busy summer.  After 3 weeks in Bulgaria, playing, eating and swimming we have all returned home and got back into the swing of things.

Weekly sessions with physio, visual impairment teacher, speech and language and starting at Small Steps School For Parents, keep us very busy.

Find out about Race Night here. 


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