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.

Christmas in Spalding

Having recovered from a family bout of norovirus just in time, we had a delightful Christmas in Spalding with Granny and Grangrad. Minnie has come on in leaps and bounds in terms of her ability to play and keep herself entertained. And you had two of your uncles to keep you entertained!

Pox

You with the pox:

Two weeks later, Minnie with the pox, having her first shoulder ride:

Not so bad huh? (It's the fever afterwards that's bad…)

And here's couple of pics of you both looking cute:

Thanksgiving

Last week was a bit of a tough one. Minnie had an operation to insert a portacath so she doesn't have to be cannulated in future when she's being transfused. It feels like a little button under her skin.

And then you got the chicken pox! At one point you were chanting a phrase from one of your favourite books, Dr Seuss's ABC, "Icabod is itchy, so am I."

Sadly, the pox meant that we had to miss Yaya's annual amazing Thankgsiving gathering in Brighton with Sadie and Ruby and Erika and Dan and Alexis and lots of other people. So we did a mini thanksgiving in the Brighton tradition, hanging leaves on a tree to say what we're thankful for.

New home

You've adjusted very well to moving into our lovely new cottage. In fact, over the last week whenever we've said we're going home, you had to check we meant the "new home?" - and you were very excited when we said yes!

You love having your own grown-up bedroom, and you're coping well with the mess of unpacked boxes and general chaos...

Poor Minnie is finding it a little harder, probably because she's suffering from a cold and teething at the same time. (Her first tooth came through this week!)

Andrew and Alex have dropped by, Yaya has visited, and today Erika, Dan, Lucas and Gilly came round. Also, Granny has come this evening for a few days. Everyone who's seen the house is very impressed! It's such a wonderful home.

No pictures of the new house yet, but here's the very last picture of the old one:

Hanging out with the Grandmothers

Mummy here.  I am currently struggling to get over the tonsillectomy I had a week ago, not an easy feat!

But every cloud has a silver lining, and for you this has meant lots of time with your Granny and Yaya. They have both been here to entertain you, while I am weak and in pain.

Granny and Grangrad took you to the beach at Southend, as well as to the Lambeth Country Show.

Yaya took you swimming with Aunty Erika and baby Lucas, where you went down the elephant slide all by yourself, what a brave girl!

I love the way your face lights up when you see them, I think it is a very special relationship!

Hospital

Your little sister Minnie goes to hospital a lot, for blood tests, blood transfusions and other assorted clinics.

Recently she went in for a bone marrow biopsy, to try to finally figure out the reason why she has been so sick.

Every time Mummy goes to hospital she is reminded that we are so lucky that Minnie lives at home with us, and is happy, and generally healthy and growing.  A lot of other families are not that lucky.

So hopefully we will have a full update in August as to exactly what she has, but we pretty much know it is a rare kind of anaemia... but we can still hope that she will continue to get better as time passes.

Mini setback

Minnie has appointments almost every other day with hospital outreach workers, paediatricians, audiologists, renal experts and so on. For the last month she's been showing signs of successfully healing and growing past her rocky birth, but on Thursday her blood results came in showing a very low haemoglobin count. The doctor advised us to take her into Accident & Emergency straight away to get a blood transfusion.

So Mummy took her and I stayed to look after you. When, eventually, you asked, "Mummy an' Minnie?" I explained that Minnie was a bit sick again so Mummy had taken her to hospital. You burst into tears. I had to reassure you that the doctors were looking after Minnie and that she would be ok.

You seemed to accept that, so for the next hour or two we started your usual bedtime routine. Dinner, fruit for dessert, and then a long bath... during which time you were obviously processing the information, because during the bath while we were playing with numbers you suddenly said:

"Want Minnie get better."

We do too!

Language, and a hard week

You're getting much cleverer with language. Stringing sentences together, using little words like "is," and expressing yourself.

This week your mum has been very ill with another quinsy, and as usual you were in tune with her emotions. "Mummy's sad," you said. "Mummy crying."

Thankfully, Mummy is almost all better now. Also, baby Minnie came off her ventilator and seemed to turn a corner in terms of her recovery. She's looking much more alert and well.

This has been a very difficult week, but you've helped us by being a delight as usual. Asking me to sing "Merican Pie," or asking for the "iPod please," or "Weepooh" (which means Winnie the Pooh).

Your Granny and Gragrad (as you call him) also helped us get through the last few days. We're so deeply grateful for how generous they've been with their time and willingness to look after you. You're always so excited to see them.

Here's a couple of very recent videos of your baby sister:

The Penny Factor

I had an emotional realisation today.

With baby Minnie being so unexpectedly sick, the last few days would have been incredibly difficult were it not for the outpouring of love and support from so many of our friends and family. But one person above all has helped us be strong, and that person doesn't even realise it.

You.

Your energy and vitality are a tonic. It's impossible to be upset when you're around, being delightful. And you are an empath to the core.

Moreover, if baby Minnie had been our first baby we might have doubted our capacity to create a healthy child - we might have been plagued by fear. But you are robust and intelligent and full of life. You give us faith.

With you, we are an indomitable family unit, ready to face whatever may come.

Meeting Minnie

Yesterday you met your new baby sister. She was born a bit early, on Valentine's Day.

You were so excited about going to meet her. When you finally got to see her you were very quiet for a while - pensive - as if thinking, "This is not exactly what I expected." It's not exactly what we expected either...

We showed you that Mummy's tummy was smaller now, and explained that the baby had been born, and this was the baby. After a few moments, your face lit up.

"Baby Minnie! Baby Minnie!" you said, pointing and laughing. You wanted to touch her. We asked you, "Where are baby Minnie's knees?" and you showed us. "Where are baby Minnie's toes?"

The doctor was very impressed that a not-even-two-year-old could identify so many body parts, so we showed her one of your party tricks. We asked, "Where's Minnie's philtrum?" and, of course, you knew. The doctor laughed and said you would be a doctor too one day.

We explained that baby Minnie - Minerva Caroline Mimi - was very sick, and that she was asleep, and that we hoped she would get better soon and wake up so you could play with her. You were keen to start playing with her right away!

And then you started to get interested in the big fancy machine that adjusts her medication dosages... so that was the end of that visit.

For the rest of the day, you wanted to go back and see baby Minnie. Each time you went in, you understood that you had to be quiet because the baby was sleeping.

I hope there will be a day soon when the two of you can play together.

Sick!

Oof, we've been a bit sick lately. First your mum got mouth ulcers, then tonsillitis, then a quinsy; then, just as she'd finally started to recover you got sick.

Last Friday you had a painful cough and wheezy breathing. When your breathing didn't get any better we decided to take you to the children's Emergency department at King's College Hospital.

They tried you on an inhaler, and then the dreaded nebuliser. Every time the doctor came in to check on you we were hoping he would send us home, but your breathing wasn't improving. Eventually, we gave up thinking we'd be able to rescue our evening plans... You were admitted into the hospital at four in the morning.

I got sent home overnight and Mum looked after you. You had an X-ray to check there was no chest infection, then you were given a room in the main hospital. You were terrified by the nebuliser, but you had to have it for at least ten minutes every couple of hours - distressing!

I came back the next morning with food, clothes, toys and things for you and mum. Thankfully, your breathing had started to clear up. The doctor reckoned you had a virus, but said you might be vulnerable to asthma in future.

We played in the creche all day while they did more observations and tests, and we were finally sent home in the evening with steroids and an inhaler for you. Since then you've been a bit fragile - not quite yourself - but feeling better. Let's hope that's it for now!

Ill for a Penny, ill for a pound

Poor Penny! You've been really sick this week. You've barely been eating, and yet having the most copious and explosive poos at unpredictable times (including, at one point, in the bath).

It seems to be the dreaded norovirus. We're going to the doctors later to find out for sure. A lot of the babies have had it recently and it ain't pretty.

Your mum has become unwell too now - she's had to leave work early. I seem to be resisting so far... fingers crossed...

It's sad to see you in such an uncharacteristic state of low energy. You've lost lots of weight to; you're like a bag of bones to pick up. I hope you get well soon!

Additional Paternity Leave

On the very day you were born, the law in the UK changed to allow parents to share maternity leave. Your mother and I decided to take advantage of the new rules - she's now returned to work a month early and I'm taking the balance of her entitlement so I can be your full-time carer for a month.

This way, I get a break from work, I get to spend lots of time bonding with you and understanding what it really takes to look after you 24/7, and your mum gets a buffer zone between being your full-time carer and shipping you off to nursery.

Well, so far so good... You had a vomiting fit yesterday (only your second one ever), slept awfully overnight, and now I'm worried you might have a temperature. This is Day 1 of my Additional Paternity Leave. Sheesh.

Your mum, meanwhile, reports that she is enjoying work today!

SICK!

Last night, just as I was putting you to bed, you were properly sick for the first time all over me.

Fortunately, you were very smiley afterwards, and seemed much better for it.

UNfortunately, when Daddy got home later, you were massively sick all over him too.  Kind of you to treat us both equally.

We just feel lucky that it does not happen often.