Good news! It’s Friday and I am writing Good News Friday after weeks of life, skewed perspective and other things getting in the way. But like I said earlier in the week on the blog, GNF – seeking out my good news out of life’s chaos and, just as importantly, hearing yours – matters hugely to me and it is here to stay. I hope…
So what’s going down in Boo Town this week?
Well first of all it’s half-term. Now this has caused a few headaches, I must admit. Because both The Grumposaur and I work, sorting out a holiday rota has been a bit challenging, but between odd bits of holiday taken, The Grumposaur’s parents and a Halloween workshop, we’ve got there even now that poor Boo is ill with a fever. And we’ve had fun! We dressed up and made masks out of paper plates. We carved pumpkins and made soup. We made cakes.
And I stole a few hours on Monday to spend with Sissyboo on her own while Boo was at nursery having the one-to-one attention and therapy he needs. Moments like these, where Sissyboo is the number one priority are rare, precious and I love them, even though I miss Boo. And when I took Boo to his audiology and physio appointments the next day she went to a safari park with her Dad. It’s been wonderful to be able to give her the time she deserves.
Speaking of appointments, Boo’s back-to-back appointments on Tuesday went pretty well. I was desperately hoping audiology would sign him off. But then I’ve been hoping that for a year. You see, for all my worries about Boo (worried, me? Never), I just don’t worry about his hearing. He can hear. If you stand down one end of a long room and utter his name he turns and smiles. Not very scientific, I grant you, but persuasive enough to me.
But ever since he failed his newborn hearing test in his right ear in the NICU (5 weeks before his due date) we get called in
to have things checked over every few months. I’m glad they are so diligent and wish all the people Boo saw could be so assiduous. But we know his hearing in his left ear is normal, that overall he can hear down to the lowest frequencies. We also know that he still has fluid in his right ear, though, and his eardrum is always a little pink and despit the fact that his cochlear function (when tested without the middle ear) is excellent, his hearing may not be perfect in that ear even though overall it is good enough to have no impact on his development. And this appointment confirmed this all over again. The question is whether he will need a grommet in his right ear at some point, but I hope not. I want him to be able to continue swimming as it is so therapeutically beneficial to him in terms of managing his tone and acquiring gross motor skills. But as far as I’m concerned, no more news on the ear front is good news even if it’s not great news.
Then we went straight to physio. Now, as you’ll know if you read this blog regularly, I love our physiotherapist. She is brilliant at her job and at various points in the shambles of Boo’s care she has gone our her way to do everyone else’s and go into bat for him. But our last physio appointment was not fun. Instead of smiles and clapping there were exchanged glances and frowns. Boo seemed to be going backwards, particularly with his sitting. I knew that, of course, but I was hoping she’s spend that appointment telling me I was wrong.
She didn’t. There was talk of lycra garments, of him never sitting independently, something we’d never discussed before. But she did come up with a list of other exercises and some aids for me to source and buy if I could find/afford them. It took ages to track things down in this country in the right sizes without breaking the bank, but with some help from ToughLittleCookies, who really knows all things SEN equipment related, I ordered them. They didn’t come in time for the last appointment, but we persevered with the exercises and nursery put in a concerted effort too.
The result: Back. On. Track. I suspect Boo was recovering from the effects of a growth spurt and that had thrown him off, but the exercises won’t have hurt and who cares why he dipped. He’s back on track. He spent the entire session making like the performing seal he is usually keen not to emulate and showing his best efforts at sitting (OK when self propped, struggles when he uses his arms), rolling (he can go front to back and side to front, it’s that pesky back to side we’re still working on) and weight bearing in standing and kneeling. You could feel the relief in the air. Smiles all round!
We’re still contemplating lycra garments because of Boo’s low trunk tone but we want to see how his body responds to that kind of sensory feedback before applying for funding to see if we could get them. So the plan was to put a tubigrip bandage sock round his middle and see what happened. Well, our hospital is rationing tubigrip, apparently, and the only stuff the physio could find was so small that we had to abandon attempts to get him into it when things turned into the corset lacing scene from Gone With The Wind. So I may be sourcing tubigrip now too! But fiddle-dee-dee and heigh-ho! A good appointment.
And lastly in good news, things are finally coming together around Boo’s equipment needs. I’ve said already, I think, that the PCT accepted the OT’s request to fund Boo a Jenx Bee seat at home. That’s been on order for 3 weeks, so hopefully it’ll be here in another 4-5. We just heard this week that the LEA is funding one for nursery, too! Such a relief. I may have danced around the kitchen. a bit. Postural support is so vital for Boo’s ongoing development, it reduces the risk of lifelong complications of his CP, like scoliosis (curvature of the spine) and will greatly aid him to do what he wants to do most: interact with his peers. We might have both by Christmas. Who says Santa doesn’t exist?
And because SEN equipment is like that train of proverbial buses, Boo’s Otter bath seat arrived this week too and a very nice man fitted a couple of hand rails to our stairs for us. These aids are for us (or rather for our creaking backs) rather than for Boo. And we are grateful. The bath seat is a particular bonus. It’s not a total hit with Boo. It’s so big that he can’t bath with his sister any more (which he’s not happy about) and so high off the bath floor, even on the lowest setting that our water bills (and the last one nearly made me spit out my precious espresso over the dining room table) will go through the roof if we put in enough water to cover him (which is a shame as he loves the water), but we need it more than him. And as I am increasingly aware, we need to look after ourselves to care for him properly.
So 9 months after it was first mooted we needed all this stuff, it’s starting to fall into place. It’s been a long wait and quite a battle (understatement of the year) but the benefits are clear and we’re glad to be able to enjoy them.
Happy half term! Now, over to you. If you have a nugget of good news, please feel free to share it below.