I was supposed to be working for the school holidays but we made the decision a week prior to the holidays starting that it wasn't fair on everyone for me to go away for two weeks. Last time I went Oscar didn't cope so well and now with Harry going down hill it wouldn't be fair to Andrew to be up all night long to both of the boys. The holidays have come at the perfect time for Oscar to get some well needed rest and sleep ins. He has been waking anywhere between 8a.m and 9.30! The nights are still long but we have had a few nights of Oscar waking the usual amount of times but not scratching for as long. I'm still waiting to hear back from our last doctors appointment from two weeks ago about what else can be done to help Oscar sleep. I have left a message to remind her and still no phone call. In all honesty, this doesn't surprise me!
Oscar has a cough at the moment that he can't seem to get rid of. He has had a temperature four out of the last five days. It seems to spike then go down then spikes again. His body is obviously working overtime to try and get rid of his cough. I'm assuming it will take his body longer to fight bugs with his immune system being suppressed.
Oscar's skin is looking amazing. The backs of his legs are still healing but compared to a month ago they look great. Oscar is so much happier within himself now and when we got out of the car to play at the park the other day he looked at the other children playing and said to me "Mum I look like a normal boy today". I asked what he meant and he replied "I don't look like an eczema boy". As he ran off to play this made me wonder about the timing of what he had just said. Has he felt self conscious about his skin more than we had realised? We have previously not had mirrors at Oscar's level and never showed him photos of himself but we have been showing him lots of photos of this journey and the photos over the last week have put a smile on his face. I can't wait to see Oscar's skin in a months time..it might be completely eczema free!
It has been very warm and windy the last couple of days- the perfect weather to put Oscar in full flare with the combination of heat and pollen in the air. His eyelids have been puffy and a few wee red blotches on his face have emerged but the rest of his body is fine. It is so reassuring to see that the drugs are doing what they should, making Oscar far more comfortable than he has ever been.
Today marks Day two for Harry's journey of Topical Steroid Withdrawl. I have knots in my stomach thinking about what we are in for with our little man. His skin takes about three days to change for
the worst. Thankfully he loves the bath as he might be spending the next few months in it!
I am hopeful that he will bounce back quickly and that I have the strength to see him through this.
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| Oscar's arms |
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| Check out how clear Oscar's back is |
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| The back of Oscar's legs |
You and Andrew are the most amazing caring parents who are only doing the best for your boys. You both seem to find an inner strength from some where when you are both running on empty. I really don't know how you are both coping with the sleep deprivation as I know you are both exhausted, but with the knowledge that you have family that care for you, love you, and absolutely support you both in the healing process for your boys. Hopefully armed with this knowledge it will give you both the courage and confidence that you are doing the right thing.
ReplyDeleteNever doubt yourselves. Love Mum xxxxxx