Hello everyone- the last week or so has been a slog and a half with Eira, hence the lack of update. I didn’t want to post again while she was feeling awful as it’s not exactly uplifting to write (or read!)
After our trip to hospital the other day, Eira didn’t get better as we hoped/expected. Her hands (and, after we left the hospital, feet) have had random intense episodes of the skin peeling, and then will be ok a few hours later. She also has developed horrible pus-filled blisters along both her lips which also flare up and then subside within a few hours- completely bizarre and I’ve had to take photos of them each time they flare up as I worry that if I didn’t, doctors would think I was just being an overprotective parent and exaggerating her symptoms when actually it is freaking weird.
The worst part of it has been that she has also developed intense stomach pain which has, like the other symptoms, come in strong waves and then subside. Most mornings she has woken up groaning in pain and each evening does the same, with between two and four episodes of pain each day. She has also randomly vomited a few times with no stimulus- yesterday she woke up and threw up bile, before she’d eaten or drunk anything.
I took her back to the doctor yesterday as the symptoms hadn’t improved, and he seemed fairly perplexed by the combination of symptoms. I mentioned that Mum had had H. Pylori after travelling to India a few years ago, and Eira’s stomach symptoms are exactly the same as hers and a friend who also has H. Pylori (it’s a weird bacteria that gets into your stomach and can cause all kinds of problems, ulcers etc if left untreated).
So we are doing a test for H. Pylori for Eira, and if it comes back positive at least we’ll know what is going on with regards to her stomach. If not then the doctor suggested that perhaps it’s just a very nasty virus or a combination of viruses.
Our doctor wanted Eira to go into hospital yesterday to be monitored and treated for dehydration as she was pale and floppy when I took her in- however having put her through that last week (giving her 10ml of Dioralyte every 10 minutes and making sure she keeps it down so she doesn’t need IV fluids) I asked if I could do it for her without going in, as she is understandably very, very much over being in hospital. He agreed as it was just a case of keeping her fluids down and said to send in a sample to get her tested for H Pylori.
After the doctor’s appointment Eira kept fluids down but was still in pain- we had tickets for the pantomime, a Christmas gift for the girls from Mum, and I thought she would have to miss it. However, she fell asleep and had a couple of hours’ nap, so we went for it and took her (she’s not contagious). She wasn’t herself but she loved it, and Mum and I were both so thrilled that she got to have a lovely ‘traditional English Christmas’ experience as opposed to missing out on everything because she’s ill.
She didn’t throw up again, went to bed early and woke up in good spirits. We’re keeping things pretty chilled for her, so a lot of reading and crafts at home, extra vitamins and plenty of fluids. Her appetite has been low so hopefully all the Christmas food will help with that, and we’re really hoping that the test will come back showing something treatable, or that all her symptoms just disappear over the next few days.
I can’t tell you how proud we are of this incredible child. She has handled everything that’s happened this year with the utmost grace and bravery. I also can’t begin to explain the feeling of looking at her little face and just absorbing every part of her- her porcelain skin and tiny freckles, her dark, super-long eyelashes. It’s like I want to drink her in, every bit of her, and just scream with relief and joy that she is here and that she is still her. Every night I sit with her while she falls asleep (we’ve always done this with our kids) and she presses her face against mine and says things like, “no matter how much you say you love me I’ll always love you one more.” The other night when she was in pain I told her that if I could swap and be ill instead of her I would, and she looked up at me and said, “I wouldn’t let you.” She is just the most amazing person.
Her sisters have been equally as amazing; they have consistently stood back while we put extra care into Eira, and have also just behaved beyond any expectations we could have of them. While Elfie can’t put this year into words, I’m sure to a point she has found things unsettling but she is one of the happiest kids in the world (when she’s not practising her insults, of which the most cutting is the dreaded “stinky poo head.” Burn.)
Esmae has been a rock. She’s been so aware of everything and has been through more stress in a few short months than some people go through in a lifetime. She has consistently been a protective and caring sister, kept her creative spirit and is processing everything in a pretty amazing way. She is having fewer nightmares- it’s a slow journey of healing but she is doing it, and it’s incredible to watch. We have just been given some very special people to raise.