She perked up a lot in the afternoon for about an hour and was able to sit up at the table and do her new sticker book and also walked around in the new flip flops which I had brought her!! She was very pleased with these and I am definaty in her good books now!! Who hoo mummy must have taste! She even managed to sing a few songs!
Unfortunately she wasn't up and about for long but at least it's a start and a lot better than yesterday. Trouble getting to sleep tonight.
Day 9 - Evie had a better night and didn't wake up at all which is great! She didn't settle till nearly midnight the night before though but thats not the point she slept well so that was good. This morning she didn't feel great but perked up mid morning and went upstairs to get her flip-flops to show granny and grandad (she does still love those flip-flops!) and went on the laptop for a bit and played games and typed etc. She was perkier for longer today than yesterday so thats a good sign!
Her skin today is still very sore and flaky on her tummy. Her head hasn't weeped today which is good. When she gets tired she scratches! Settled quickly for bed but woke after an hour! Could be a long night tonight!
Day 10 - Woke up happier than yesterday. Morning she just sat and watched tv but perked up after lunch and even went outside and helped simon polish the car!! She is still loving the flip flops! No weeping head and skin is very sore today. Overall a bit brighter today which is good! Night time not so good took a long time to settle and up a few times.
Day 11 - Best day so far as she has been up most of the day and even out in the garden playing badminton and on the trampoline! Got tired and cold at dinner time though. So in herself she is feeling a lot better but skin still bad. Its not so red but very sore and flaky. Weeping neck. She is still at times really cold in herself but to touch feels very hot and sweaty. She has also been answering me back so i know she is feeling a bit better! Mind you id rather have cheeky madam Evie than floppy poorly Evie xx Went to bed ok but up till quite late that night but once settled not too disturbed.
Day 12 - Woke up quite happy and feeling a bit better. Skin very very dry today and itchy. Its still red all over with sore patches. In herself she is a lot better though and has been up to her bedroom doing my friends hair! She also was able to pop to the supermarket. She also felt up to going to play at her friends house for a couple of hours. But I noticed when she got home she was very tired and feeling poorly again so perhaps she did a bit too much today. As usual went to bed ok but woke several times during the evening. Weeping patches, hot and uncomfortable.
Day 13 - Woke up feeling ok. Her skin really hurts today especially when in the bath. In that respect its getting worse as usually once in the bath it eases her symptoms and she feels more comfortable. Her skin is also very very dry. In the morning she didn't have much energy and just wanted to sit and watch TV. In the afternoon she perked up and was able to go to her friends party which was great! It was so lovely to see her happy and with her school friends even if it was only for a short time.
Day 9 - Evie had a better night and didn't wake up at all which is great! She didn't settle till nearly midnight the night before though but thats not the point she slept well so that was good. This morning she didn't feel great but perked up mid morning and went upstairs to get her flip-flops to show granny and grandad (she does still love those flip-flops!) and went on the laptop for a bit and played games and typed etc. She was perkier for longer today than yesterday so thats a good sign!
Her skin today is still very sore and flaky on her tummy. Her head hasn't weeped today which is good. When she gets tired she scratches! Settled quickly for bed but woke after an hour! Could be a long night tonight!
Day 10 - Woke up happier than yesterday. Morning she just sat and watched tv but perked up after lunch and even went outside and helped simon polish the car!! She is still loving the flip flops! No weeping head and skin is very sore today. Overall a bit brighter today which is good! Night time not so good took a long time to settle and up a few times.
Day 11 - Best day so far as she has been up most of the day and even out in the garden playing badminton and on the trampoline! Got tired and cold at dinner time though. So in herself she is feeling a lot better but skin still bad. Its not so red but very sore and flaky. Weeping neck. She is still at times really cold in herself but to touch feels very hot and sweaty. She has also been answering me back so i know she is feeling a bit better! Mind you id rather have cheeky madam Evie than floppy poorly Evie xx Went to bed ok but up till quite late that night but once settled not too disturbed.
Day 12 - Woke up quite happy and feeling a bit better. Skin very very dry today and itchy. Its still red all over with sore patches. In herself she is a lot better though and has been up to her bedroom doing my friends hair! She also was able to pop to the supermarket. She also felt up to going to play at her friends house for a couple of hours. But I noticed when she got home she was very tired and feeling poorly again so perhaps she did a bit too much today. As usual went to bed ok but woke several times during the evening. Weeping patches, hot and uncomfortable.
Day 13 - Woke up feeling ok. Her skin really hurts today especially when in the bath. In that respect its getting worse as usually once in the bath it eases her symptoms and she feels more comfortable. Her skin is also very very dry. In the morning she didn't have much energy and just wanted to sit and watch TV. In the afternoon she perked up and was able to go to her friends party which was great! It was so lovely to see her happy and with her school friends even if it was only for a short time.
Day 14 - Another better day. Evie is probably felling in herself the best she has so far. On the other hand though her skin is at its worse. She couldn't even manage to sit in the bath today as it was so painful so i compromised and just washed her down and didn't do hair. She has a lot of scratch marks on her skin from scratching in the night and these are quite sore.
She felt well enough today to go to the shops for a couple of hours and it was great to see her happy and enjoying looking at all the girly things in the shops! She very nearly persuaded me to buy her another pair of flip fops!!
Notes -
Gets itchy when sitting by herself so needs a distraction
Likes massages on body and feet to relax her and stops scratching!
Creams i have applied this week are diprobase, Aveeno and vasaline
In the bath we have used epson salts and dermal 600
My feelings this week
I have felt a lot more positive this week. A lot of this is down to the overwhelming support I have had from friends after I posted a link to this blog on Facebook. I wasn't sure whether to put it on or not but Im so glad I did. It has given others an understanding of what Evie has been through and what she is going through now. A lot of people didn't realise the extent of her eczema. It has definitely raised awareness and hopefully it can help others who are going through a similar thing. Lots of people have also shared their own stories of family and friends who also have eczema and have given me ideas of what we can try next.
Evie has good and bad days and so do I! Some days I have patience but other days when i haven't slept so well (due to Evie being disturbed) my patience is tested! Its particularly hard when i want to get her dressed, put her cream on or get her in the bath as its so uncomfortable for her. But it has to be done so I stay strong although it is very hard at times.
So overall this week she is a lot better in herself than last week and has more energy but her skin is worse. She looks in her face better than last week though and isn't red and puffy anymore. Im hoping she will be able to go back to school in the next couple of days. Nights are still quite bad but maybe getting a little better?! Im expecting the next few weeks to be up and down so we shall see what they bring. Cant believe already two weeks have passed! She is doing so well bless her xx
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