Some good news and the Grand Poo-Bah of Hemiplegia

 

It's only Wednesday but we've achieved a lot this week. Maybe that explains why I'm absolutely exhausted! Monday we spent most of the day at the hospital, we had two doctors appointments and a session with the Occupational Therapist. Some good things came out of the day. Well.....good for us, perhaps not so good for the hospital physiotherapist. Max's Pediatrician, the magnificent Dr Tom wasn't too impressed that we are paying for private physiotherapy and so he is going to speak with the department on our behalf. Max's hematologist wasn't impressed either and is also going to talk to them. Dr Tom is also going to try and help us to obtain funding through Medicare to help pay for private therapies. I really like the idea of that because I like having some control rather than being at the mercy of the public health system.

That same day, we had a session with the hospital Occupational Therapists. It was the second time we met Sue, an OT who is doing a PHD in kids with hemiplegia. After our session on Monday, I've nicknamed her 'The Grand Poo-Bah of Hemiplegia". OMG, the woman is amazing. (The OT we've been seeing is lovely but we haven't achieved all that much). Sue picked up some things that I hadn't noticed at all or had noticed but hadn't realised how frequently he did it.  If you look at the photo at the top of this post, you'll notice that Max has his right arm pulled back at the shoulder. I knew he did this but once it was pointed out, I realised  that he does it nearly all the time. This is causing a lot of tension in his shoulder and surrounding muscles. Which totally explains why he struggles to reach for his toys- his shoulder is too tight. Because I spend so much time with Max the abnormal becomes almost normal and this is why a good therapist is worth their weight in gold! We've got some new stretches to do on his right arm and I've seen some improvement already.

We saw Max's private OT from SPOT today for the first time. She gave us some extra strengthening exercises and now I finally feel like we have a comprehensive program that works on his right side as well as his overall gross motor development. I feel so much more relaxed knowing that he has therapists who know what they're doing. Every day it's hard work doing physiotherapy and stretching with him, if we don't do it constantly then he slides backwards very quickly. But at the moment I at least have some respite from the constant researching of stroke therapies. And boy does that feel good.

Before I sign off I just want to say a huge THANK YOU to everyone who supports this blog. I can't reply to your messages personally but I read them all (sometimes a few times). Knowing we have so much support really helps me stay strong and survive the rough days. THANK YOU 'Team Max' xxx

(There's some other good stuff in the pipelines but for now it's a secret. Hell, a gal has to have some secrets, lol)