As the end of the year approaches, we are celebrating success,
For Gorgeous Grace there has been lots, as she continues to make progress,
Today, we focus on the positives, the great things that GG has done,
We enter 2015 looking to the future and the daughter who is so much fun.

So happy at her new school, GG is always pleased to be there,
She loves the other children and the staff who genuinely care,
GG is learning so many things we didn’t think she could,
Delighted she joined in the Christmas show, for us it was so good.

The amazing support we receive from friends and family,
The fantastic opportunities from Footsteps and Snowdrop therapy,
The brilliant volunteers at the RDA, who help GG ride a horse,
Plus your fabulous siblings, they deserve a mention too, of course.

GG’s singing is so adorable and there’s certainly a rhyme in her song,
So cute when she sings with actions, and so excited when we sing along,

One of the big surprises of the year – one we did not expect to see,
Was when GG recognised her name, pointed and screeched ‘me’!

The epilepsy still poses a problem but is increasingly under control,
GG takes her medicine willingly – with no fuss at all,
She is sleeping so much better and is a lot happier for it,
She now manages without having to go to bed for a daytime kip.

GG’s hearing test back in June, that came back all clear,
So none of the issues she suffers, are due to problems with her ears,
In January and again July, there were reviews with Orthoptics,
Her eyes can see, the squint no worse, nothing there to fix.

Her feet continue to improve, her walking looking good,
Now she attempts to run as her feet start to move as they should,
Jumping is more tricky, but GG can jump on a trampoline,
As for climbing, she’s made progress, climbing into her chair just fine.

Over the past few weeks, GG has learnt a skill we did not foresee,
She has learnt to use the toilet when she needs to have a wee,
Such an important skill in life and so hard when you can’t communicate,
We are absolutely delighted with her 80% success rate!

So can see there is so much progress, so much to be grateful for,
GG is such a smiley child, you cannot help but adore,
As 2015 begins, we will do all we can to see,
More and more progress this year, to help GG be the best she can be.

#HappyNewYear! #Focusingonthepositives

A Cheesy Christmas!

As always at Christmas, this magical time of year,
It’s a time to reflect, for us a time we always shed a tear,
For all the things we wish for, the things you cannot do,
We know some of those wishes, may never come true.

Then we pull ourselves together, and celebrate all we have,
A beautiful, amazing daughter, known as Gorgeous Grace,
So many things you have achieved, we couldn’t be more proud,
Our precious girl, completely unique, you stand out from the crowd.

We are so lucky to have you with us, in good health and safe,
Altogether for Christmas, to have fun and celebrate,
There is so much to be grateful for, we have a fabulous family,
You GG are at its’ heart – the best place for you to be.

You are so excited, shouting ‘Santa’ over and over, so loud!
A year ago, you couldn’t do that, another reason to be so proud,
You understand about presents, better at receiving than giving,
You rip off the paper, not bothered with the contents, it’s all too exciting!

Only our GG, when asked by Santa ‘what would you like?’
Could respond with something that like her, is so unique,
‘CHEESE!’ she screeched repeatedly at the top of her voice,
Has she been good enough, to find in her stocking, her cheesy choice?!

Merry Christmas everyone!

Keeping the balls in the air?

How do I keep all the balls in the air? The honest answer – I don’t.

Just last week I dropped one. My heart dropped when I saw the number for Footsteps physio pop up on my phone. I knew immediately that I had missed a session, gutted, they are gold dust…..however I am not perfect, I am not supermum. I had contended with a poorly baby, getting 2 girls to 2 schools 30 minutes apart and still managed to get into London for an important work presentation. All on one hour’s sleep….not bad really.

However, dropping balls doesn’t happen all of the time and I haven’t missed anything big – yet. Feedback from a number of professionals leads me to believe that I am reasonably good at managing it all, so if you can bear with the fact that I sound like I am project managing my daughter, I thought I would share some of my tactics.

Now ‘Gorgeous Grace’ has started school, a good chunk of the co-ordination and appointments are managed through school. Physio, OT, SALT and educational activities are all handled within the school day with feedback to home as to how to support the activities. Much better. In the early years however, you are an island managing it all alone with no co-ordination at all. So what did I do?

Firstly I created ‘The Folder of everything’. Over the years it has become several folders. This has been invaluable and I can be frequently seen lugging a bag full of folders to appointments – anyone who believes the NHS systems talk to each other, think again. The times I have been asked for test results, details of examinations etc and I have it all to hand (much to the surprise of the Consultants).

The ‘folder of everything’ includes:
A section for future appointments so that letters are kept together and easily found when arriving at the hospital reception area
A list of all professionals involved and contact details
A list of all tests and results in date order
A section for each consultant e.g. paediatrician, neurologist, genetics, orthopaedics with copies of all letters and notes of any phone call or email correspondence
A seizure log detailing all seizures by date and actions taken
Medication details so I can quickly advise on current medication if needed plus repeat prescription paperwork
Research programme details – for us the ‘Deciphering Development Delay’ study, copies of all communication received and dates of responses from us noted
A section for each other medical area – orthotics (boots prescriptions), eyes, ears etc.
A section for each therapy area – physio, OT, SALT and education psychologist
‘Complementary therapies’ i.e. those sourced privately – details of activities and reports e.g. signing, Riding for the Disabled, Footsteps physio and Snowdrop
Education section with copies of statement, all IEPs and other important documents (now an entire folder on its own)
Transport section (a little empty at the moment, grrr – another blog to follow….)
An advice and support groups section which includes all handouts, contact details and information worth keeping
Wheelchair services details plus manuals for buggy / wheelchair
Disability Living Allowance – another one requiring a folder for itself (always keep a copy of what you send, 2 of 3 have been lost….)
Blue badge (2 applications have been rejected to date but I keep a record anyway for the appeal process as and when I have the energy)

Enough to start with? I think so.

Once I compiled all of this, I then pondered on how it was ever going to be possible to keep
co-ordinating it all and making sure everyone knows what is needed and what we are working on. Fortunate enough to have excellent family and friends, plus a nanny for when I am at work, it was important to keep everyone up to date. The solution? The ‘action plan’.

The first ‘action plan’ was written at the point where so many professionals started to get involved – around the 18 month mark. It comprised of physical, communications and learning activities. Plus key priorities, things to remember and next steps. In one document I summarised what was important right now. We are now on version 12 so a new one roughly every 3 months. Version 11 got to 2.5 pages, version 12 has been narrowed back down to 1 page – much easier to deal with.

The most difficult thing about the ‘action plan’? Prioritisation. I am a mum but I am no expert on what is most important. Advice from up to 12 professionals all to be processed and followed – impossible. I learnt early on to follow my instinct, what is most important right now – Signing? Using the toilet? Actually no – weaning off a baby bottle and getting clear liquids into my daughter takes top priority right now. If we get chance to work on matching games and block building, of course we will, but that can come later.

The ‘action plan’ is shared with everyone involved – family, friends, school, health professionals, therapists. Everyone knows what we are working on. It does not stop other activities taking place but justifiably I can communicate what is most important at the moment. I ask for feedback, I share it with the lead paediatrician and to date have had nothing but positive reinforcement of this approach.

So yes, I wish I didn’t need to have ‘the folder(s) of everything’ or ‘the action plan’. Those evenings I pour myself a glass of wine, update the folders and then pull together the latest plans, I can’t help but feel more like a project manager than a mum. But when I get up the next morning I know everything is in order, the balls are in the air and most importantly it’s the right balls in the air.