Its been a good few weeks since I last posted on here and that one was a pretty depressing post I must say! But I am so so pleased to report that things are finally looking a lot better for Evie and us all as a family!
We had a very good holiday to the Isle of wight which I think really was the turning point. As usual I started to write a blog about our holiday but haven't yet finished! The days and weeks just seem to go past so quickly its crazy!
Well I am so pleased to report that Evie is back at school! This is just a really amazing thing as the holidays were so bad i thought she wouldn't be able to go back. Like I said the holiday was the start of it getting better. Evie was still very reluctant to get up and do anything but most days we just made her! It was a case of be cruel to be kind and it really worked. It just got better and better every day. She was very reluctant to go out but once she was out we started to see the old Evie return! Outside playing and feeling happy again. Her skin was still quite sore and red but in herself she was well enough to play again. Still when she was inside she wanted to be wrapped up in her blanket but I felt she had deserved it as she had done so well in the day time!
Back to school!!
When we got back home from holiday we just tried to keep on with the positiveness and encouraging her to do more. It was hard at times but we kept on and every day she would do more and more. Then it came to go back to school and we kept making positive references to it and not once did she say she didn't want to go so that was such a great thing to hear!
First day back came and she was a bit reluctant but I think all children are after being off for so long so i reminded her of this. Id written a letter to her new teacher telling them all about her illness and what had been going on over the summer holidays. I then had a meeting with the school and we went through a care plan for her and what they can do to help her at school etc. This was such a relief as finally they knew all the ins and outs of whats going on with Evie and they are there to help in any way they can. For instance she is wearing tracksuit bottoms and a long sleeve top for PE and can change elsewhere so she doesn't feel uncomfortable. She is currently on an egg and gluten free diet and this is something the school can accommodate too which is great!
Her fingers are really sore at the moment so its been hard for her to write and concentrate as at times they become quite uncomfortable. Ive got her some cotton white gloves to wear from the chemist and these have helped her a lot. We call them her Michael Jackson dancing gloves!
I also got her a school fleece to wear over her cardigan so she could feel warm as i told her she couldn't take her beloved blanket with her to school! She had been wearing it constantly even in the boiling heat but Friday last week she didn't wear it so I'm hoping we have turned a corner there perhaps? We shall see what happens tomo! Small steps! She took part in PE once and goes out at break but stays in at lunch but again these seem like very small steps but are massive things for Evie! Im so proud! Two and half weeks of school! Amazing! There have been a couple of days she has cried when I've left her but I've stayed strong and she has been absolutely fine. At times she is very sore and uncomfortable but they have all her creams at school which they can apply and these help her.
Keeps on Getting better!
Although at times Evie finds it hard and lacks energy, still overall her energy is coming back and she is doing so much more! For instance she has been able to walk to town, ride her bike, go on a bungee trampoline, go the the theatre and lunch and best of all she has played yes played with her best buddy and sister! Sounds so silly but I can't remember the last time she joined in and just played an imaginary game! She was up wrestling with her friend (he's a boy!) then we had a disco in our living room and she loved it then played princesses with her sister! I could have cried very happy tears!! So good! Im just so proud of her and i hope every days continues to get better. Its like she needs to learn again how to join in and have fun!
Evie's skin
Evies skin as well is looking soooo much better. Probably to anyone else it still looks bad but to us as we see it every day there are definitely improvements and it just keeps on getting better. In particular her face is not swollen any more and is getting clearer every day. Looking almost normal. I think cutting out egg and gluten has definitely helped this as it improved very quickly once we eliminated these from her diet. The flaking has died down and we can see better skin all over. The Redness is still there and worse in some places especially where she scratches on her wrists and lower back and ankles but its definitely getting better. Still flaky but not as much!
Nights are a lot better too and she only wakes a couple of times so she is getting more sleep.
So all in all after 12 very very long weeks of withdrawal and nearly a year of Evie being poorly we are seeing improvements and Evie is feeling so much better!!! Whoo hoo! Please please let in continue xxx
Update - 24th September - Unfortunately Evie came home from school today feeling unwell and was quite upset. She was very upset going into school and didn't want to be left. Usually when she does this she is ok once we have gone but today she wasn't. Not bad going though considering she has been back for a few weeks now. Once home she didn't seem too bad so fingers crossed for tomorrow. I don't want her to slip back into that low lethargic ill place again. But you never know it could just be she is coming down with something else. Ive had a cold and her sister has a sore throat so we shall see …………………..
My next blog will be about Evies daily routine and what we are using at the moment and an update about latest Dermatology apt etc xx
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