Moshi monster mania , hair cuts , tears and amazing generosity


Since the last blog entry we have all been busy with preparations for the looming admission and just the general things in our normal family life. Things like Scouts and Beavers for Lily, Kitty & Rufus. Guitar lessons for the girls, Rock School for Lily etc. This daily madness and the jammed packed days have made me realise this week all of  the less obvious things that I will miss whilst I’m away from home and all of the things that need sorting during the time we are holed up in London. I’m not talking about obvious things/people like the children or my home comforts but the following..

The crackling fire, the buzz of the start of the day when everyone gets up and comes into our bed to say good morning, the playground at 8.45am and 3pm , just generally catching up with people, visiting the Fleece with my friends for drinks and chats and the space, the greenery and the views, the list could continue.

Herbie is having a good week. He is becoming more and more comfortable with his PEG and is no longer hunched over when he walks. He is still very protective of it but I’m glad about that. He is having it flushed every day now by the community nurse team and although he’s anxious he is helping to do it and also helps clean the wound. It’s almost a week since it was inserted and he’s come a long way.
On Monday Catey & Hiral came to film at our house again…tears take two for me!

On Tuesday we had to face the inevitable haircut. There were a few worried looks by Herbie as he watched the hair fall to the ground but as we couldn’t face having to do the buzz cut they suggested we went for a crop.
I know he’s my baby Small but seriously he still looks so cute! The girls, Dan & myself all got cuts too this week (thanks Sarah) and Ru complained that he might like one too (no way!)
Hair cut
Small goes short

On Wednesday Herbie said a temporary farewell to his outreach teacher Victoria. He was sad after she had left and told me how much he would miss her. We got a photo of them together for his photo wall we are going to create in his room. Photos are coming thick and fast now…I can’t wait to see his face when he realises how many people are ‘coming with him’.
He also popped into his class to say hello and ask them if they could write to him xxx
The post delivered exciting items…lots of fab things from a friend who lives in Dubai followed by a delivery courtesy of Mr Moshi who also offered a tour of Moshi HQ when he feels better. He also got tons of bits and pieces from his Aunty Cathy & Uncle James too
imageMoshi mania
Mr Moshi
Today Rufus had his HTA assessment to be sure that we are not forcing him etc. A 10am appointment in London meant an early start & Rufus was car sick but we made it there with time for a big breakfast before our 30 minute chat where the psychologist deemed us all switched on and aware and mentally organised. Thankfully home before school pick up and to find some lovely new Hickman Line bags courtesy of Lynn at MySewcalled designs
And a letter from a fabulous little girl called Hope complete with pictures etc. honestly
the generosity and love of people I know and indeed some that I don’t is amazing!
4 more sleeps until we go…

2 thoughts on “Moshi monster mania , hair cuts , tears and amazing generosity”

  1. Wishing you all the best for the BMT. You are a very brave and inspirational family. My son Tom has Common Variable Immune Deficiency, he was eventually diagnosed at 3 years old, after suffering life threatening pneumonias and meningitis. We were initially told that he may need a BMT but after further tests it was confirmed that his condition could be managed with prophylactic antibiotics and in the future IVIG. I remember the fear that swept over me when I read up on BMT, I can only imagine what it must be like in reality and the impact it will have on your family. I am following you all the way and sending you all our best wishes, I am sure your strength and positivity will get you through this challenging time. Stay strong.
    Kate, Steve, Tom and Ed xx

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