it's been such a lovely day!  My little girl is wearing her pretty pink dress (thinking back to her Caring Child Award is always wonderful) and has a beautiful silver watch on a chain around her neck.  It's rather nice to hear her announce the time every few minutes!
Tom has a more relaxed outfit of joggers and t-shirt, but has spent several moments on his new computer.  The special small keyboard is great, and he's even managed to start learning how to touch type!  Thank you dance mat typing !
In Mummy gifts, the fort kits are a resounding success!  Dammit dolls are much loved but need a couple of stitches (not so much experience with that fabric)... experience!  Tom really liked the elastic shooter made from a chopstick and clothes peg, and the little bath and toothcare kits seemed appreciated!  I can't wait to see them in their nightshirts tonight!  Oh... Tom's cuddly toy, complete with long tail and ribbon tags to chew is already well love
Nick was in equal measure tickled and frustrated with his gift!  A calendar with a new envelope to open on the 25th of each month!  Each one contains a task for the month ahead - some easy and enjoyable, others more of a challenge, but leading (I hope) to joy!
I was much loved today - Tom bought me some necklaces and Kesia a beautiful book and a lovely bracelet.  Nick bought me a wireless mouse - very very useful as my laptop one does not work.  A beautiful table lamp to match our new sitting room lamps and a box of little useful boxes that will store all my bits and bobs - just lovely!
As ever, Nick cooked, but the pressure of presents being over meant that we relaxed enough to work well as a team - him cooking and me cleaning!  Tom even ate a yorkshire pudding and roast potato!
And the best Christmas day afternoon... just lazy with a film.
So to face a new year.  There are little things I would like to try and achieve... I am thrilled with the idea of journalling as seen in this lovely lady's blog, and I would also like to find a way to catalogue the wonderful cards sent to us all through PostPals.  I'm thinking a kind of journal too, although the idea of storing things fills me with some anxiety.  Receiving those caring thoughts is so important to us that I need to find some way!  Talking of which, the children were so fortunate to receive presents from their PostPals elves, and some little extras from otherwarm hearted strangers... Lucky, lucky us!

_ Zack:
Fort kit, paper dr who make a tardis, book with a homemade bookmark, dammit doll, toothbrush kit, bath kit, hammock, electronic sign to make with dad, wallet made from fruit juice carton with a tesco voucher, elastic shooter and possibly to come a marble maze.

Kesia:
Fort kit, paperhouses to make, "tangled" paper doll set, nightie, dammit doll, toothbrush kit, bath kit, book with homemade bookmark, knitted scarf, colouring book of family photos, wallet with tesco voucher, elastic shooter and elf application form.

Tom:
Fort kit, fuzzy felt homemade toy, dammit doll, toothbrush kit, bath kit, wallet with tesco voucher, elastic shooter, marble maze, nightshirt, taggie cuddly toy, colouring book with magnet to hang pictures on fridge, elf application form

I think that's it!!  I've been busy making all these little gifts for my lovelies, to

This is quick because in the midst of some lovely and hopeful news, I am reeling from massive miscommunication (once again) with our local CAMHS.

But to Tom...  Feedback was great!!!  The team at GOSH were really pleased with him, and felt that we have worked really hard with him.  The only reservations they had before embarking on an intensive tube weaning programme was the realisation that our family life is stressful and unpredictable.  Given that the programme will be stressful, they wanted to be sure we were ready.

Tom should be starting in the spring, and the programme is in the form of fortnightly clinic visits with a therapist.  There are many professionals involved, but essentially we will be reducing his tube food gradually whilst working on his oral eating.

I will keep you posted on start dates, but I feel hopeful and positive!

So yesterday was a long day.  We four were up at the crack of dawn ready to leave for London as Tom had finally been referred to the Feeding Clinic at GOSH (Great Ormond Street Hospital).  Although the whole family was convened, Zack is still at school, and given his residential status, we all felt that his presence was not essential.  And honestly, given Zack and Kesia's ability to cope with new situations, taking one of them only was a relief.

The first thing I have to say is that rail travel is EXPENSIVE!!!  And my beloved family railcard is useless as you can only use it after 9:30am.  So much money later, we caught our train just in time with dozens of other commuters.  I can only praise Tom and Kesi, for they behaved beautifully.  By the time we reached Clapham Junction, Kes was suffering from the crowd somewhat, but handled herself beautifully.

Once we had had a quick breakfast at the hospital canteen, we headed up to the CAMHS department (child and adolescent mental health services... I normally attend our local one, but the feeding clinic is part of GOSH's CAMHS... you gotta love those acronyms!!).  Funny, despite having been really stressed up to arrival, I went into hospital mum mode:  all practical and coping.  Tom was weighed and measured (sigh, some weight loss), he and Kesia were led to the best hospital playroom you have ever seen:  loads of space, two huge children's tables, a climbing frame, a water play circuit... and that's only what I took in at first glance!  Nick and I shuffled into a distinctly more boring consulting room to begin a two and a half hour interview...

I do cling to some hope that this will turn out to be helpful, but I can't escape the fact that this service deals with behavioural and psychological issues, and that the medical is not their remit.  I am feeling a little sceptical of their ability to open any medical doors needed to help my little boy with the fundamental cause of his feeding problems.

There's not a great deal to say just now about how the interview went.  Two psychologists took copious notes as I answered their questions (Nick did a really good job of corroborating and supporting, despite feeling less than helpful).  They will then hand all this out to various "ologists" and I will be given feedback next Friday.  I find it very difficult to separate the children, and given that this service could do so much to help Kesia, keeping the focus on Tom was difficult for me.  The more hopeful side of me wonders if they will have any advice for me about helping her...

My little girl found the day very hard... being in a strange place was no fun, and she did need to come and check in on us a few times.  To the point that when lunchtime came, she found she was unable to choose anything from the menu...

We chose for her, and I'm glad to say she ate her fish fingers and chips nicely.  Tom actually did very well.  He refused his first plate of food spectacularly (unfamiliar food), hiding uder the table, crying, pushing the plate away etc... and categorically not touching ANY of the food on it.  His second plate (chips) went down really well - some of his best work in fact!  The third of four plates was finger food, with various crisp types, a biscuit and some chocolate buttons.  He was feeling a little off by this time, but did eat the chocolate.  The fourth plate was jelly and ice cream, and he LOVED the jelly.  Gently coaxing was not enough to get him to sample the ice cream however.  Both the kids loved the "magic room"... all we needed to do was wish out loud for something and it would be brought in: salt and vinegar, ketchup, the next course all arrived with oohs and ahhs of glee from Tom and Kesi.  I think we did well, and it was as normal a meal as such a thing can be.  We all had a good giggle when Kesi loudly and clearly asked, "Please could I have a kitten?... NOT cooked!".

After which it was time to go!  A good dose of Aspie stress meant that Nick was feeling quite unwell by this time and we decided against an afternoon outing.  This was confirmed when Kesi just shut down suddenly as we left the hospital.  Crying and complaining of exhaustion, it took all our patience and gentle care to get her to her feet and moving.  We decided to walk back to the station which turned out to be a wonderful decision.  It was a beautiful day, and we all loved the walk across the river, pointing out the well-known buildings.  It must be said that Kesia is very happy to call herself a country girl, and was delighted to get away from the big city with all its loud noises and horrid smells!

So now we wait...  In a week I will go back and listen to what all these "ologists" think and what advice they have to give...  Stress is still intrinsically tied to food here as each meal is a little mountain to climb.  Tom, I do not worry about in spite of everything:  I know that I can keep his health stable and his weight acceptable thanks to the tube.  Kesia worries me so much.  She herself acknowledges that her eating is not good at the moment.  It has become rare for her to bring home an empty lunchbox, and she does not often finish her meals at home.  I will be calling her therapist next week to relay this information and I have spoken to the GP.  I am coming against the usual reaction:  "children do not grow continually, it is normal to have times of lessened eating or growth, don't worry so much, her bmi is in the healthy range...."  My answer (which I could not give in Kesi's presence...): "she has been losing weight since September, she is eating and drinking very little and has only grown a few millimetres since July, her history gives me real cause for concern, bmi is NOT an adequate measure of health for a child at risk of an eating disorder".  I just want to avoid the crisis point which will tip her into anorexia. PLEASE!  I know that food is probably always going to be a point of weakness for her, but we should be able to steer clear of the hellhole that full-blown anorexia is.  Should.  IF the various people helping her listen to me.

So first we deal with Tom, who

_KESIA'S HOME PLAN
DECEMBER 2011

TARGETS AND ACTION PLANS
Step 1
Goal
To help Kesia express her feelings about her chores and still be able to comply with instructions.
Action Plan
Kesia's Mummy will sit with her to design a 5 choice chart to react to an instruction.
The scale will look like this:

1. Deny or swallow our feelings & comply passively
2. Refuse in a rude manner.
3. Withdraw or run away.
4. Avoid complying by use of trickery and manipulation.
5. Make our feelings and decisions known in an respectful manner.

Mum and Dad will label Kesia's action (behaviour) by labelling it as BLUE, ORANGE OR GREEN
BLUE = Shut down, feel bad and do what you are told
ORANGE = Unacceptable behaviour: rude refusal, running away, manipulating or tricking (for example changing the subject or putting blame on someone else)
GREEN = Let Mummy or Daddy know how you feel. Make the difference between your feelings and your actions

Labelling reactions like this should help Kesia to regulate her behaviour and to identify ways of how she can express herself.

Kesia can achieve:
1 tick if she only shows one orange reaction in one day
2 ticks if she shows no orange reactions in one day

When Kesia has achieved 20 accumulative ticks she will move on to Step 2.

Step 2
Goal
To help Kesia express her feelings about her chores and still be able to comply with instructions.
Action Plan
Mum and Dad will label Kesia's action (behaviour) by labelling it as BLUE, ORANGE OR GREEN
Labelling reactions like this should help Kesia to regulate her behaviour and to identify ways of how she can express herself.

Kesia can achieve:
1 tick if she only shows only one orange or blue reaction in one day
2 ticks if she shows no orange or blue reactions in one day

In this step, we are encouraging Kesia to take care of herself and not deny her feelings.
When Kesia has achieved 20 accumulative ticks she will move on to Step 3.

Step 3
Goal
To help Kesia express her feelings about her chores and still be able to comply with instructions.
Action Plan
Mum and Dad will label Kesia's action (behaviour) by labelling it as BLUE, ORANGE OR GREEN

Labelling reactions like this should help Kesia to regulate her behaviour and to identify ways of how she can express herself.
Kesia can achieve:
1 tick if she only shows no orange or blue reactions in one day

In this step, we are encouraging Kesia not to show any blue or orange reactions. We are helping her to express her feelings and yet be able to complete tasks.

When Kesia has achieved 20 accumulative ticks she can get her reward.
REWARD PLAN
Kesia will discuss this with Mummy.


This plan was discussed with me on and I fully understand it and agree to work on it.
Name

Signature

Kesia Symcox

Mummy

Daddy

_ Oh my goodness, I had not realised I was so behind with Tom's updates. I am so sorry because just last week, Kesia and Tom were saying how much they love receiving post from Postpals.

It's been a busy few months, for all the children really. Some of you may know that Zack, Tom's older brother has Asperger syndrome and is at residential school. He is doing well there, but hometime is always difficult. I forward any of his Postpals mail and he absolutely loves it. Kesia is still struggling with extreme anxiety and difficulties around food and school. We need to pursue a statement of special educational needs for her to ensure that she can go to a secondary school that will allow her to thrive. That has taken a lot of our energy and we continue to do all we can to support her and give her opportunities to smile and feel happy.

So, our pal Tom!!! Tom's had quite a hard term so far. He suffered a very bad few weeks of croup and an ear infection that stopped him going to his beloved hydrotherapy... a very unhappy little boy! For a good six weeks he and I spent much of the nights awake with the nebulizer to try and avoid hospital. On the whole he did well, though we did have a couple of midnight trips to our local when his breathing got really bad.

His ear infection proved very resilient so we were seen by ENT a couple of weeks ago. That ear is slowly improving now, but we found out that he has glue ear in the other ear and medium hearning loss. Another thing to monitor...

Some really good news in the midst of all this fairly normal illness was his cardiology review. His heart continues to be stable and the doctor is very happy with him. We are therefore back on to growth hormone injections daily that Tom is managing amazingly well. His beads of courage help him enormously, and he has made a deal with me to earn a special bead once a week as well as his daily black bead (the black beads symbolise a needle). We see the endocrinologist at Christmas, and I am hoping that he will have sorted out the funding for the treatment which has as we speak been rescinded by the Trust... sigh

Our biggest concern continues to be food and growth. Tom became very poorly while he was suffering with croup, and vomiting was a bad problem again. Luckily, we are being seen by the feeding clinic at GOSH this coming Friday. As nervous as I am to have our dysfunctional eating under scrutiny, I am hoping that some answers will eventually come out of it. I have to say I'm also hoping that they may be able to help Kesia who has very different problems with eating.




PostPals keeps making us smile.. The letters from around the world are a source of sheer joy, our regular posters warm my heart especially and the surprises from PostPals (the balloons are still floating around) are wonderful. Thank you so so much.