Later we made a visit to our potential new dentist. Sadly, ( though not for her), the dentist the boys had known since being babies retired but at least it means we have less travelling time. I went for a check up and the children had a look round and met the staff.
The next day I needed to go to the doctors to discuss treatment plans. It was an early appointment and the boys were incredibly helpful about getting ready and sitting quietly whilst we discussed the options. I left with copious amounts of new medication , fingers crossed I get a pain break for a while.
After lunch our friends came to visit and loud amounts of laughter rattled the windows as the children played. It was so lovely to see them and we had a great afternoon. After a lighteningly quick tea, the boys went off to Jujitsu, it's grading this weekend ,so they need to hone them there ninja skills.
We were off to see our peadiatric consultant today...I no longer feel nervous because we are listened to and understood. Sam and Owen look forward to going to these appointments ...which speaks volumes about the care they are receiving. As parents we relax and feel we can be ourselves, huge bonus.
We stop for lunch and play cards.
Sam happily waits to go in and talk to his specialist.
She is really pleased at the children's progress and we chat about the achievements they have made since we last spoke. Both boys happily join in and there are some good laughs. It was a long day but well worth the journey, Sam is stable on his new treatment and we can carry on as we are for the time being. The doctor reiterates that she feels the children present with extremely complex conditions, but are 'blooming' , looking well and developing brilliantly ...it's so nice that she can see the same positives we can. She mentions trying to get more support for us but as things stand it will be hard. I remind myself to try and send the forms off for and EHCP assessments. It's hard to work up enthusiasm when funding is being cut everywhere.
We do some tidying today and I help Sam and Owen organise their rooms. They are starting to lose things and I help them get their rooms in a bit more order... I take the opportunity to have a good clean round and sneak a few broken bits and bobs out to the bin. *shhhh don't tell*
They decide to continue with their weather project, today we look at how the temperature influences weather across the world. There is information about kinetic energy, humidity , thunder, lightening, dust storms, freezing rain and a lot of fun 'tests' to watch . We base this on the BBC Extreme weather programmes and it stimulates much debate.
In the afternoon I take the children for their swimming lessons, they decide they want to sign up for a 10 week block next. It goes really well, we love their instructor, he's seems just right for them. He notices things other may not..like Owen counting the mosaic tiles in the pool and gets his focus back with fun misdirection.. 'Hey I bet I can guess what you had for lunch Owen?'. He words instruction in such a way that they respond , lets them work things out and gives loads of praise. No nagging just..'right boys..what do you think I am going to suggest now? Let's face the front so you can get a good push off the side'...rather than 'I need you to hold on to the side or I want you to do this' ..which would be perceived as a demand and anxiety inducing. I sit with a stupid grin at his skills and take note.
Owen manages to use the showers this week and is getting more confident, Sam is like a human cork and loves being in the water..he grins from ear to ear constantly. I nervously sign up for more sessions and hope we can keep this positive momentu going. It's helping their coordination issues too, double win.
The large dose of steroids are managing to give me a pain break, although it's not without some issues , I am enjoying greatly reduced attacks and more energy. As this will be short lived we decide to make the most of it and take the children to Waterworld. It was such a fabulous afternoon , everyone was very helpful and kind...so many laughs for us all. It's not something I could do last week and was utterly brilliant, the children were epic.
This afternoon the children have their Jujitsu grading. Sam doesn't have his normal anxiety at going to the other hall full of people. Owen seems more unsettled this time but they are determined.
It's one of the few occasions we have to leave them somewhere but march into the hall with the other, older children and take their places. Blokey and I go for a pub lunch and hope the boys do well.
Both passed ! Half green belts this time. The photo shoot afterwards is always hellish for Sam but he still insists on doing it despite his clear discomfort. Afterwards he recovers very quickly and helps Owen and the other children pack the mats away.
Since its been a week with something happening everyday , we promise they can have a full on chill out today. Blokey manages to resurrect Owens burnt out PC and he is chuffed to bits to get back online with his,friends and start building again.
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