Progress

Selfie

 I take Owen and Florence to Opportunity Class three days a week now, which is great.

Opportunity Class is now known as ” Early years special development team” doesn’t really roll off your tongue does it .? So  I will continue to call it “Opps Class”

This week we made fruit smoothies.. which included touching, tasting and chopping fruit.  Florence was in her element.. Florence loves to eat. Owen enjoyed feeling the fruit and even ate some kiwi!!

We also had fun making valentines cards. Owen gave his to his big sisters and Florence gaves hers to Daddy.

The speech therapist came to Opps class but unfortunately didn’t get eound to seeing us so will have to try and get a home appointment. I was keen to see her as Owen has been a lot more vocal recently and I want some advice on the next steps.

Valentines Card

Wednesday afternoon I had a text confirming our Community paediatricians consultant appointment for Friday.  This was a surprise as I hadn’t made one.

So braving the rain again on friday we went off to the appointment.

It went pretty well.

Owen was remarkably alert and smiling away during the whole appointment.  Owen made great eye contact throughout.

She noted how much his high tone has improved since the last appointment last October his legs were then always so stiff as a board with toes pointing downwards, his arms were the same with his hands tightly fisted. It was very hard to move his limbs and dressing was tricky… it still is to be honest.

The consultant was particularly pleased with his hands, as they were more relaxed and not always as tightly fisted as they had previously been. His thumbs are still constantly tucked into the palm of his hands though so we will continue to get Owen to wear his hand splints and massage and work on his hands.

The consultant checked his spine and its lovely and straight.

As we already knew his hip x ray came back normal. Owen will have to have a hip

x ray at least once a year.

She was very impressed that Owen got through having bronchitis and a recent cold without a hospital admittance considering his history… touch wood it stays that way.

Even though he still has a cough and sounds very stuffed up his chest was clear. But we are still to be on tender hooks as any sign of him becoming chesty we are to seek medical help sooner rather than later… so again touch wood as winter hasn’t finished with us yet.

Owens sight is still a concern, but we will no more next month when we get the results of Owens recent tests. That I have to say is scarying the @#$* out of me. As I know they won’t come back all positive. .. but too what the negative is.. I honestly do not know?

One cause for concern that was flagged up was when I was explaining my worries about Owens sight, I explained that sometimes Owen seems to have moments of blankness. Where he just stares into space. The consultant warned me to keep an eye on these as if they increase it may indicate that Owen is having absent seizures.. (something I have googled.. but the staring can also relate to CVI  which is to do with his sight and brain messages being jumbled.. which also after googling previously if one of the things I think the eye test may show)

Overall Owen showed improvement and no new immediate action needs to be taken, just more of the same.  Keep working hard with the Physiotherapists and Occupational therapists. Continue working hard at home. Keep up with the Early years intervention. Continue using all the equipment at home.  We both agreed that all of the above has helped Owen tremendously.

So basically we are doing everything that is possible… so just keep going.

Owen playing drums in his Jenx bee special needs chair
Too much hard work… Zzzzz

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