In 70 years time ...

Today (Sun 11th Sept) we celebrated your Gramps' 70th birthday, seeing the family at Pizza Express in Reigate.  It was a lovely, sunny day.

While we ate our fish and chips at dinner, Daddy explained to you that 70 years ago there were no colour tvs and that there was no Internet, and no mobile phones.  He asked you what you thought might be new in 70 years time.

"Radish pumps and polka dot ambulances," you said, without any doubt.

I love your imagination!

Penny writes the stories

You have always had a way with words, talking and reading very early.  And now you are writing your own stories ... brilliant!

Penny's Imagination

Today you were telling me a story about a "baby marshmallow Jesus." Actually, you weren't telling me, you were telling your imaginary friend Margot, who is a tiny fairy.

You have a knack for making up stories, we especially love this one from when you were 3 ...

Duddles

Minnie has an excellent vocabulary ... however she can't say the words quite right because she can't hear them quite right.

So for a long time there has been a Minnie way of saying some words:

Duddles = Cuddles
Peyyey = Penny (though she is better at Penny now)
Ukk Adoo/Mayoo/Da/Dayi = Uncle Andrew/Matthew/Dan/David
Art Eka = Aunty Erika
Dawbeej = Strawberries
Pee = Please
I na joo = I love you
Jooj = Shoes

That is a good reflection of how Minnie talks at the moment.  Though she manages to say 'Peppa Pig' with the utmost clarity ... necessity is the mother of all invention!

Out Out, Damn Spot!

You are very good at washing your hands after you go to the bathroom.  And your sister loves to watch you and join in whenever she can, she is fascinated by the ritual (even though she is still in nappies).

Two little stories form Greece

We're visiting Super Papou in Greece - with Yaya and Dimetres, but without Mummy. You and your sister are having so much fun. Today we ate lunch with Hella in Loco Bus and went to the play area, which had a bouncy castle, a ball pit and a toddler climbing frame. Maybe I'll post some pictures later.

Seeing Super Papou and Minnie sitting next to each other, I imagine Super Papou being Minnie's age and sitting next to someone of Super Papou's age - who would have been born in 1833!

I wanted to tell you two funny stories from today.

You made up your first joke. You made a string of spaghetti out of Play-doh with Dimetres this morning. You put the spaghetti on your nose and said, "Look! Bolog-nose!"

Dimetres laughed so much that you kept on going - you put the spaghetti on your eye and said, "Bolo-eyes!" then "Bolo-ears!" and so on.

Later, in the play area, you were having fun in the toddler climbing maze, which was full of little padded rooms with net walls, and slides, and ball pits. At one point you shouted, "Daddy, Daddy, Daddy!"

"Yes, Penny?" I said. I couldn't really see you in there, but I could hear you well enough.

"I'm a stuck princess!"

"Oh, really?" I said. "Will you be stuck a hundred years and grow old in there?"

"No!"

I laughed to myself, and went back to chatting with Yaya.

Then five minutes later you started crying. "What's wrong Penny?" I asked.

"I'm a stuck princess!"

"You're really stuck?"

"Yes!"

So I ventured into the child-sized climbing maze and found you. Sure enough, you were totally stuck! You had unzipped a netted wall, snuck behind the maze and zipped it up again behind you - but the zip was only on one side! You were huddled into a tiny space, smiling at being rescued. I know you like pretending to be a princess, but it was very funny to hear you refer to yourself as one in that situation!




Also, soupcases.

Medical options

Minnie's medical status is constantly evolving. No doubt in a few months' time things will have changed and we'll have forgotten what decisions we were wrestling with, so I thought I'd capture where we are right now, for posterity.

Min is healthy, having fully recovered from her various medical problems last year, except for two threads: her deafness and her pyruvate kinase deficiency.

As far as her deafness goes, we had 11 appointments put into our diaries in the two months leading up to Christmas to go through her assessment for cochlear implants. We're halfway through them as I write this, and Em and I reckon it's reasonably likely they'll recommend that Minnie should have an implant in her right (profoundly impaired) ear, while her left (severely impaired) ear should remain aided.

As much as we'd prefer not to install a piece of kit into Minnie's skull, the benefit to her hearing and speech is potentially huge. Her ability to develop speech is greatly helped by the small amount of hearing in her left ear (she can hear low frequencies with only mild impairment), but right now, Min has never heard the high-pitched consonant sounds like 's' and 'sh'. With an implant while she's still small she could learn to interpret and use those sounds quickly - and she has a chance to be talking normally by the time she goes to school.

The other thread is her pyruvate kinase deficiency, which means that her haemoglobin count gradually reduces over time - she becomes anaemic and a bit yellow. She's been having a blood transfusion once every six weeks to top her up and keep her healthy.

Next year we are going to try and wean her off blood transfusions - extend the gap between transfusion by an extra week each time. The idea is to test whether her body can maintain her haemoglobin count at a reasonable level. She will certainly be anaemic by normal standards, but if she can still grow and be healthy and have energy then she can give up the transfusions.

A normal Hb count is about 11-13. Min has gone down to around 8 before each transfusion - and that's pretty much the lowest that the haemotologist would be comfortable with leaving her at. If she could maintain at 9 or more and still be healthy and have energy, that would be ideal. But if she maintains at less than 8, she'll definitely have to go back onto the transfusions - probably every four weeks, indefinitely - and she'll need chelation as well.

Regular blood transfusions mean that iron builds up in her blood and can eventually lead to organ damage. Chelation (which is basically a pill once a day) counters that, but can have side effects including the loss of her precious remaining hearing.

If weaning Minnie off transfusions doesn't work, that'll be disappointing, but transfusions are still more appealing than the other option, which is to try and cure her. The cure for pyruvate kinase deficiency is a bone marrow transplant, which requires chemotherapy, which would almost certainly leave Minnie infertile. We are not willing to make that decision for a one-year-old. Better to continue with transfusions until she's old enough to be part of the decision - and maybe by then medical technology will have progressed enough to provide us with more alternatives.

Thank goodness for the NHS.

Terrible Twos

Mummy here, to declare that your sister's terrible twos started on Thursday 20th November, at age 21 months and 6 days. Well, they started for me anyway, and I am pretty sure yours started at the same age.

That's what we get for having feisty, wilful, confident girls ... and in the long term I wouldn't have it any other way.

So what happened? Two things ...

1 MY Banana!

M asked for a banana. I started to peel it and offered it to her. She shrieked and pushed it away. I offered her a fresh one, and she happily peeled it herself and ate it herself.

2 You can't take that!

I took something away from Minnie, probably my phone, and she had her first whingy stampy-feet tantrum. Actually stamping her feet, she was so cross.

So we are in that place again, and it will get worse before it gets better. I hope it doesn't last too long though!

Lullabies

Sometimes, when you go to bed and can't sleep, you sneak out of your bed and ask me to sing you a lullaby.

When you first asked this, I wasn't quite sure what to sing.  So I decided to go with 'Away in a Manger' (AKA 'The Jesus One'), 'Silent Night' and 'Edelweiss'.

You enjoy them very much, as do I.  We cuddle up, and you watch me tenderly, listening intently.  You always ask why Jesus is asleep on the hay, to which the answer varies in length, depending on how keen we are to get you to bed.  You also try to sing along, which is also lovely as you can really hold a tune.

On other occasions you categorically ask me not to sing along to songs... which is less good!

The Godparents

A while ago, we went for a walk with both of your godparents in Dulwich Park, and Granny joined us too.

It was a lovely day, walking in the sunshine and stopping off at the Crown and Greyhound pub for a much needed lunch.

Grangrad's visit

Grangrad (although you have sometimes started calling him Grandad now) took you to see the largest ever gathering of Routemasters at the weekend.

He had a couple of stories to tell from when he was looking after you. In his words:

1

Yesterday morning Penny seemed calmly excited about the prospect of going to Mini-Stars.

M was a bit upset when Charlie went outside to get the bike and trailer ready so I picked her up and stood in the front doorway with her so that she did not crawl into the front garden.

P seemed quite concerned for M (who had vommed earlier). P turned to me and suggested I take M into the lounge to play. I accepted P's suggestion and it worked!

P is learning about distraction tactics!

2

On Saturday P and I used the lifts at KX / StP underground station. As you perhaps know, level 0 is street level, -1 is ticket hall level, -2 is interchange level , and -3 is platform level.

Penny of course spotted and recognised the numbers alongside the push buttons inside the lifts, but was mystified when the lift went down when -3 was pressed.

I leave it to you to explain to her the concept of "minus" signs!!!

Meaningful Milestones

Your little sister Minnie has learned to walk.

It has taken her a little while, she has been a very speedy crawler (unlike you) so she didn't see much point in it till now.

And it has been quite emotional for me (Mummy).

When you reached your milestones we were of course very proud, parading all your new tricks to the world and declaring you (slightly tongue in cheek) as very advanced.  But we barely even thought about the prospect of you ever NOT hitting any of them, you just did them automatically and there was never any need for intervention.  Indeed, the challenge with you is figuring out how best to encourage you so you fulfil your potential, as you are so bright and eager to learn.

But with Minnie, none of these milestones were ever guaranteed.  I remember sitting in the hospital with Daddy a few days after Minnie was born.  It was the evening and we sat opposite the beautiful prospect of Big Ben in the Riverside Lounge.  It was quiet and empty as it was late, and Granny and Grangrad were kindly looking after you while Daddy had some time at the hospital.

We sat, and we had the most heartwarming discussion.  One of THOSE discussions, you know.  We declared how lucky we were to have each other, as a solid foundation as rough times had hit us with a thud.  How lucky we were to have you, our spark of joy in the darkness.  And how lucky we were to have our friends and family who rallied round so valiantly.

And we talked about the brutal realities.  About how we would manage Minnie no matter what, however broken she was.  But also being honest with each other, agreeing that what scared us most was not losing her, but for her to be left alive as a mere shell of a person.  Unable to move, feed, feel happiness, independence or to properly live.  But that, even if that happened, we would manage.

So with every milestone, I remember that conversation.  I see her smiling with elation that she is taking her first steps, I hear every babbling word and grab onto it with glee, I love that you play together so joyfully now she is bigger, stronger and becoming her own person.

And despite all the clinics, transfusions, blood tests and hearing challenges, they are simply nothing compared to where we might have been, had fate not cut us some slack last year.

We are so lucky … and every milestone really is a miracle.  I adore you both.

Jokes, Pythagoras and favourite things

You asked to learn some jokes, so I taught you a few, and you've been delighting all of our friends by reeling off such classics as:

• Two fish in a tank and one of them says... How do you drive this thing?
• What game do you play with a wombat? Wom!
• How can you tell if there's been an elephant in your fridge? Footprints in the butter!
• What's yellow and dangerous? Shark infested custard!
• Why did the chicken cross the road? To get to the other side!
• Horse walks into a bar, the barman says... Why the long face?
• What brown and sticky? A stick!

After about a year of trying, I also finally managed to get you to be able to recite Pythagoras's Theorem, by putting it into a song. But you refuse to perform it. You sing it in the bath, sure, but in front of our friends you're suddenly shy.

Pythagoras had some special news
"The square of the hypotenuse
Is equal I swear
To the sum of the squares
Of the other two sides!
(For right angled triangles)"

If I sing any part of it wrong, you correct me like I'm being very silly indeed...

"Peppa Pig had some special news -"
"No! Pythagoras!"
"The square of the hippopotamus -"
"NO! Hypotenuse!"

And today I asked you, out of curiosity, what were your favourite things in the world.

• Your favourite place? Brockwell Park.
• Your favourite colour? Pink.
• Your favourite person? Uncle David.
• Your favourite book? Anything with boats in (although you couldn't name any in particular when pressed).
• Your favourite film? The Little Mermaid (it used to be Lion King, then I'm sure it was Tangled and/or Frozen for a while...).
• Your favourite food? Spaghetti (with butter and cheese).
• Your favourite thing to do? Play and eat.
• Your favourite toy? Björn (Although we'd got home by this point and you were losing attention - Björn just happened to be nearby...).
• Your favourite animal? Bears (This said with Björn on your shoulders).

Jon and Sofia got married

At the end of May, we travelled to Spain to be at the wedding of Jon and Sofia.

Your Daddy was Jon's best man, just as he was for Daddy 7 years ago.  He made a great speech, and we had a fun time being treated to fantastic food (like roast suckling piglet and sliced jamon).

The sun shone, and everybody had a happy weekend, with lots of dancing, chatting and sharing fond memories.  You even tried to swim in the pool, but found it far too cold (we did warn you, but you needed to try it for yourself).

Arts and Crafts

A little while ago in April, we built a massive Duplo castle where each wall was made of a different colour of bricks.

After that engineering challenge, we decided to make bead necklaces today, so much fun. You concentrated a lot, and definitely had a preference for the shiny beads.

We had to be careful with Minnie, so she wouldn't want to eat the beads, but she seemed happy with her 'That's not my Donkey!' book.

Green fingers

You used to pull up everything in the garden when we first moved here. Now you take great pride in finding the ripe strawberries and watering the plants so the flowers grow.

I cut you a rose from the gorgeous bush which grows next to our front door. You seemed quite touched (even though you did proceed to take all the petals off!).

Kid Logic

We were out walking this evening. The weather was glorious, so there were lots of runners going along Norwood Road, probably on their way to Brockwell Park. You were sitting on my shoulders and we were having a nice chat.

You noticed that the runners carry water with them, so I explained that it is important to stay hydrated when you run. Then a man wandered past carrying a can of lager.

"Runners carry water, walkers carry beer!" you said, as if proudly stating the answer to a mathematical problem.

I giggled, and explained that not all walkers drink beer. Once I confirmed that I wasn't giggling at you but at the situation, you took the information on happily.

You have a beautifully pure way of looking at the world.

Visiting Chris & Gay in Dorset

We drove down to see Chris and Gay in Dorset for a couple of days over the Easter weekend.

We visited a swannery, did an Easter egg hunt in the Abbotsbury sub-tropical gardens and visited a lovely play park.

Above all, it was great to catch up with them, for them to spend some fun time with you and your v smiley little sister, as well as enjoying the countryside and their splendid garden.

Roald Dahl

A few months ago, way before your third birthday, we started reading you Roald Dahl books. A favourite from our own childhoods, Minnie had received a well illustrated version of Fantastic Mr Fox for her naming day.

You seemed ready to try something a little more advanced than your usual books, so we gave it a try. And you lapped it up. A few chapters a night, and we stormed through it. You were a little disturbed when Mr Fox had his tail blasted off, but managed to stay intrigued rather than troubled.

And when we finished, we moved on to the less illustrated versions. The Twits, George's Marvellous Medicine, Charlie and the Chocolate Factory and now Charlie and the Great Glass Elevator. You still enjoy your old books with the big pictures from time to time, but you are now on a roll.

And we have so many great Roald Dahl stories to go. I think maybe Matilda will be next, but I can't wait to see your face when you meet Miss Trunchbull!

And we have started reading your little sister a bedtime story too, which she enjoys very much. She also likes reading her board books by herself, feeling all the fabrics and textures of 'That's not my...', though she is still rather partial to nibbling a corner or two.

Exhausted!

We went swimming together in early March. Min Min clung onto me tightly, as she was not quite sure what was going on, we have not been swimming very regularly over the least year.  But as time went by, she started enjoying it a bit more, and laughed happily as we played games of 'chase the ball' with her.

You love the water now, splashing happily around in the teaching pool without your armbands. And it is a sure bet that swimming will tire you out.  So much so, that Daddy's head made a suitable pillow, you simply couldn't stay awake!