28 Jul Tink & Pickles in The City
It has been a very very wet day in Manchester and we have been to Royal Manchester Children’s Hospital to see the Endocrinologist with Esme.
Following her discharge from the Genetics department, her consultant wanted her to have endocrinology investigations in case she had a growth hormone problem.
As it:s free on the train for codgers, I took both of her Grandmas. Only joking…..it wasn’t free.
Luckily Grandma Denise dismissed me outright when I told her we wouldn’t need the rain cover.
Ii was looking forward very much to treating these two ladies to lunch.
They are the very backbone of my family and it is thanks to them that we are able to get through summer holidays relatively unscathed and just about sane. We love them very much. I’m incredibly lucky to have a great support network, not all mums are as fortunate and I don’t take them for granted. Well, maybe sometimes.
Particularly since Esme was born, they have kept me sensible when I was Googling my head to death, fed us when I couldn’t face adulting and just….kept me going. It was lovely to have them come with us.
I did dread any bad news or anything that would send me back down the ‘not knowing’ road.
RMCH is an impressive place. Bright and colourful. The girls were very much entertained during our wait there.
There was a fantastic magician that was hilarious and he really helped to pass the time.
What was also nice was speaking to other parents of a little girl that was so like Esme.
A few years older than her, she had similar tiny features and was in clothes for children years younger. She was adorable. It was humbling to speak to others that had been through similar but are now post diagnosis and leading a normal life.
I was both delighted and perplexed that Esme had put on weight (now a whopping 14lb 7oz) but lost a cm in height.
Nothing surprises me with her anymore.
She may even weigh more but she evacuated a nappy full of sweetcorn and broccoli on the train on the way there.
The professor was wonderful.
He went over her history so far and concluded that it is his thinking that Esme may indeed have a growth hormone deficiency (GHD).
Her facial features, open fontanelle and forehead prominence all point to this.
We have agreed to have the tests.
If this is the case, treatment would be daily injections of GH when she is old enough.
This condition is not life limiting, but would be life long.
We can handle that.
We have also agreed for her to take part in the 100,000 Genome project.
The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.
The aim is to create a new genomic medicine service for the NHS – transforming the way people are cared for. Patients may be offered a diagnosis where there wasn’t one before. In time, there is the potential of new and more effective treatments.
I think that this will turn all of the negatives emotions around her first 18 months into a positive contribution.
All in all this was a good appointment – we are making headway.
To celebrate, we went to Nandos – obviously. It seems to be our ritual when visiting the RMCH and as with all good rituals, they require consistency 🙂
By this point there was no point in trying to keep dry so we walked over to the Museum Of Science & Industry. Niamh always takes a back seat when it comes to Esmes appointments so it’s nice to do something that is just for her.
There was so much for her to do and it is free entry so I would recommend this to any parents looking for affordable activities in the holidays.
We finished up our day by visiting Mancoco – a coffee roastery tucked away near Deansgate Station. We sat dripping consoling ourselves with amazing coffee and cake before our journey home.
So that was our day. How was yours?