This is going to be short and sweet until I can add more. Another rough week with Oscar. Itchy, no sleeping and back to Vomiting and diarrhea! We have a paeds appointment tomorrow so I'm hoping he will refer us to the gastro paeds. Poor wee Oscar. He's put up with so much over the last few months.
Harry's Skin is still healing but he's adamant on ripping under his chin and his feet to bits still.
Charlie's healthy and happy. Well as happy as he can be fighting for our time and attention .
Andrew's on school camp this week and thankfully my Mum has come to help. Thank goodness! There is absolutely no way I could have survived the week. It is so lovely having adult company during the day.
Well Oscar's finally asleep so I need to sleep too. Will update after our appointment tomorrow.
Wednesday, August 31, 2016
Saturday, August 20, 2016
NOT MUCH SLEEP THIS WEEK
I don't know what to write today. I feel like it's all just the same shit different day! I know we've had some good days and nights lately compared with how things have been and these moments give me the strength to keep going but honestly how much more of this itch do my wee men have to endure? One step forward and three back. I want to fix our boys and we are trying...we've been trying for six years! Both Oscar and Harry have been terribly unsettled at night this week so seeing Oscar get over the finish line at his school cross country was a proud Mum moment, he came a very happy last!
The inflammation on Harry's skin is nearly gone with the increase of Methotrexate, however Harry's still very itchy and uncomfortable. I'm hoping this will subside over the next few weeks. He's still having brief moments of play but spending a good part of the day sitting on the floor wanting to itch or on the couch wanting pats.
I'm getting my head around refining the boys diet even more and following the Eczema Diet books recipes. This will be my third time reading the book! We are mostly there with all the suggestions in the book but it's really about being committed and organised with meal planning. Stage one requires not eating apples, Oscar's favourite fruit. I've told Oscar that I will follow the diet too so that he's not alone. Harry will be served the same foods too however he's only two..nearly three and has a mind of his own!
I woke up to a beautiful conversation at 6.30 a.m between Charlie and Harry yesterday..
Harry: "My feet aren't ouchy anymore and my arms have none blood now
Charlie: Does your skin feel better now Harry?
Harry: Yes
Charlie: If you don't scratch your skin then you won't get eczema like my skin"
I heard Charlie remind Harry later In the day not to scratch so he will have skin like him. What a lovely big brother :)
The inflammation on Harry's skin is nearly gone with the increase of Methotrexate, however Harry's still very itchy and uncomfortable. I'm hoping this will subside over the next few weeks. He's still having brief moments of play but spending a good part of the day sitting on the floor wanting to itch or on the couch wanting pats.
I'm getting my head around refining the boys diet even more and following the Eczema Diet books recipes. This will be my third time reading the book! We are mostly there with all the suggestions in the book but it's really about being committed and organised with meal planning. Stage one requires not eating apples, Oscar's favourite fruit. I've told Oscar that I will follow the diet too so that he's not alone. Harry will be served the same foods too however he's only two..nearly three and has a mind of his own!
I woke up to a beautiful conversation at 6.30 a.m between Charlie and Harry yesterday..
Harry: "My feet aren't ouchy anymore and my arms have none blood now
Charlie: Does your skin feel better now Harry?
Harry: Yes
Charlie: If you don't scratch your skin then you won't get eczema like my skin"
I heard Charlie remind Harry later In the day not to scratch so he will have skin like him. What a lovely big brother :)
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| Cross Country Day..so proud of this wee guy |
Sunday, August 14, 2016
THREE HAPPY BOYS
Good news and good news! The specialist gave us the go ahead to increase Harry's methotrexate dose and within a week it has done wonders. This time last week he was so uncomfortable, weeping and raw and this week his skin looks amazing. The problem areas have more healing to do but overall we're excited to see him looking so well and watching him happily play. Hes still having intense itchy moments but he's doing very well.
I'm looking forward to seeing what the next few weeks brings for him.
Oscar came off his antibiotics last Friday and hasn't been sick or had diarrhea. He's been constipated and had Wednesday off school but other than that he's sleeping unbelievably well, waking in the mornings between 7.30-8.30 and has energy. After three months of being sick he seems to be completely well. As our doctor said sometimes they don't have the answers to everything and can't always explain why. So no need to be refered to the gastroenterologist paediatrician but we are being refered to a paediatrician. Oscar's Skin has started to get slightly itchier by the day after coming off the antibiotics. This isn't unusual for him so hopefully his skin settles soon.
I have started running this week and have managed getting out three times. I haven't done anything for myself in such a long time. I've had no energy or desire to. The emotional toll having two children with high needs is mentally exhausting but I now feel I'm at a point where I have to do something for myself. I have to clear my head every few days!
Andrew did the Peak to Peak multi sport race in Queenstown on Saturday and we went over to watch him finish. I don't know how he does it! It's very cool for the boys to see Andrew giving it his all and not giving up. The boys are very lucky to have such an amazing role model.
Fingers crossed we have another good week.
I'm looking forward to seeing what the next few weeks brings for him.
Oscar came off his antibiotics last Friday and hasn't been sick or had diarrhea. He's been constipated and had Wednesday off school but other than that he's sleeping unbelievably well, waking in the mornings between 7.30-8.30 and has energy. After three months of being sick he seems to be completely well. As our doctor said sometimes they don't have the answers to everything and can't always explain why. So no need to be refered to the gastroenterologist paediatrician but we are being refered to a paediatrician. Oscar's Skin has started to get slightly itchier by the day after coming off the antibiotics. This isn't unusual for him so hopefully his skin settles soon.
I have started running this week and have managed getting out three times. I haven't done anything for myself in such a long time. I've had no energy or desire to. The emotional toll having two children with high needs is mentally exhausting but I now feel I'm at a point where I have to do something for myself. I have to clear my head every few days!
Andrew did the Peak to Peak multi sport race in Queenstown on Saturday and we went over to watch him finish. I don't know how he does it! It's very cool for the boys to see Andrew giving it his all and not giving up. The boys are very lucky to have such an amazing role model.
Fingers crossed we have another good week.
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| Harry's feet last week |
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| Harry's feet this week |
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