This week has been a hard one for all of us; I think the aftermath of the last couple of months is slowing catching up with us. Ben has again found it harder this week, mainly due to the fact that he is walking more with his walker & then becomes more tired and everything then becomes a struggle. Also he seems to have had a lot of homework this week but I am pleased to say we are keeping on top of – well so far anyway...
Sunday 6th March
The boys had a lovely time at their sleepover at Auntie Em’s, so after the weekend we have had it was a nice quiet afternoon & evening planned. The usual Sunday routine reading books & homework & an early night was in order. Ben chose today to show us a new ‘trick’ he has learnt to do. Ben had only just been able to do this before SDR, but never able to walk after getting up let alone get back down to the floor without falling.. Take a look.
Monday 7th March
It was such a struggle for me to get up this morning let alone the boys; life is well and truly back to normal. The boys went off to school as normal and me off to work. When Ben came home he was complaining that his splints were hurting him, when I took them off there seemed to be a small red mark on his right ankle but nothing really to worry about! Physio was a struggle tonight as Ben was coughing a lot so every time he lay down he had a coughing fit! So I cut it a little short. I also emailed St Louis pictures of Ben in his splints to see if they can offer ant solutions to his pain, and problems with wearing his DAFO’s.
Tuesday8th March
There was not physio today as his physio was away, so I booked an appointment to see his osteopath Amos, who has not seen him since we have been back. It was lovely to see him he also helped explain why his DAFO’s (small splints) were causing him discomfort. It was due to him pronating (rolling in on his ankles) so much on both feet the DAFO’s can’t support him. He gave us some insoles to build up his arch to see if they can help the problem.
Wednesday 9th March
Ben looked very very tried when he came off the bus today, he look shattered. It was physio & wheelchair basketball this evening, I just wondered if he would manage them both. Well physio was not the best in fact it was awful – Ben refused to do anything & even got upset, which then made me upset. I understand that thinks can get hard & on top of him sometime, it just breaks my heart to see him like that. But luckily these are only short lived times & son he is back on track. It did however give me time to chat to Anna about his splints – we had decided to try every morning next week to send him in his DAFO’s and to then put his larger ones on at break time, and see how he manages. Ann would inform school on Friday when she goes in. At basketball been was full of it , he did have a minor accident – he fell backwards and bumped his back & head on the floor, but was actually fine. As always Ben did not want to leave Basketball but as I reminded him about Thursday morning and how he struggles to get up he agreed to leave at 9:45pm.
Thursday 10th March
After dragging Ben out of Ben, he seemed to have a spring in his step – so to speak today. He was really happy and even said he couldn’t wait for physio this afternoon, go figure!!
So come 3pm when we arrived back home he was raring to go with Laura. He worked so hard again for he today, I think he was making up for yesterday which was lovely to see. He also showed her his new trick, standing up from the floor. He was so proud of himself as we all were. We also had a chat about his splint & even spoke about finding a private orthotics to cast & make some new ones.
That evening I received an email from Deanna at Children’s in St Louis saying they were going to make him some new DAFO’s with alterations that would hopefully sort out the problem and help him feel more comfortable, which was amazing news.
Friday 11th March
Busy day today lots happening, well Ben has – Friday Xtra after school club then the highlight of any 9 years old life, the school disco!
I briefly saw Anna at school & told her about the splint – we decided to still go ahead with the DAFo’s next week anyway. She also said that he had a great physio session which was lovely to hear.
It was so lovely to watch Ben get so excited about the disco, he has the same love for music both Damian & I have & I would like to think my dancing style!!! He even planned his clothes, white t-shirt, jeans & his leather jacket not forgetting the spiky hair, he looked so grown up. We had agreed he could take his sports wheelchair to the disco s it is easier to manoeuvre and he could really keep up with his friends although he usually just says near the sweet table and buys sweets all night. How wrong could I be, I was told by 2 staff that he had been on the dance floor all night & they were all impressed with his ability to moving so quickly in his chair – I was so pleased for him, he told me it was the best disco ever. Again another proud mummy moment.
Saturday 12th March
Well it’s the weekend again, we have another busy one. Physio followed by a visit from the Maltby family who are thinking about SDR for their son. Ben had a great physio session today managing to do a few exercises he has been struggling with & he work the whole hour without any breaks. The Maltby’s were lovely & hopefully we answered all their question as best we can. They had seen Ben’s story on Calendar & got in contact with us, which is what we had hope would happen.
So a bumpy start to the week but again he has pulled it off and ended in style.
Charlotte XX
No comments:
Post a Comment