It’s almost Christmas and the tree is up, the lights are twinkling and bright and all I am wishing for is that my little girl will be well enough to unwrap her pressies.
Christmas is such a special time and overall we are all having so much fun getting ready for the festive season, my little ones have been busy with the school plays Meggie has been a China girl in her play and Issi-May has been an Angel, which by anyone’s perspective is hilarious but it was great fun making the outfits and yes I do make their outfits – every single year!
Still this year with all that has been happening Issi-May is really struggling hence the title to this blog, and I don’t mean to harp on but really guys and gals it’s getting to the point of no return. For the past week morning noon and night my little girl holds out her fingers with her hands raised and I apply steroids of the strongest kind and apply to fingers, the skin now to the bone and watch as the tears literally roll down her face as she sobs. Then we wait, twenty minutes later we apply emollient then she has movement in her fingers – enough for me to apply bandages then we use calpol (having used calprofen prior to applying the strong steroids). Then it’s time for tickles and cuddles as I try to hide the tears from her as I sit on the sofa and wonder how much longer before the skin heals……. The main purpose of the bandages is to stop her in the night from tearing at the skin.
Whilst all of this is going on I am trying so hard to keep my other daughter feeling that she is also getting all of the attention and feeling excited about Christmas, to my horror she bandaged herself up the other day in order to feel important!!! I went along with it and put moisturiser on her foot and said that I thought that would help her feel much better and we should also have cuddles and tickles on the sofa.
We now all moisturise after every bath – lol.
On a more important note, we have a review due with our community eczema clinic and dermatology department which is clearly of great importance, I have also booked independently with a very senior dermatologist for Issi-May as there is still a great disparity between community and dermatology. In community the advice given differs greatly than that provided by a dermatologist and Issi-May is not getting better. Her fingers are becoming unusable to the point that she often will not extend them at all and will not pick things up and sometimes will not eat things that involve using or holding cutlery. So her diet is also suffering and her immune system is equally becoming a problem. She has also started to not want to hold things that involve bending her fingers so again anything that requires extended movement in her fingers and knuckles.
Lips are another area that are constantly dry, chapped and split even swollen – constantly in need of moisture and even low dose steroid creams. Her skin is always hot and her knees and feet are on fire and she just looks up at me and says “mum more cream – again…”, then she wants to sleep.
So, for me this Christmas…. I want to see her open her presents with her face lit up and to be able to play her toys if only for a little while, that would make me very very happy.