He had seven appointments in one day.
His mum planned it so he could have oncology related bloods taken, before the meetings. She planned to have Dexter's 'cancer-checking' scans the following day. (He never got those scans... He developed high temperatures and was sent home, with instructions to see his doctor.)
We waited a few days to write this post.
We waited, because if we had written it after the appointments, this post would have been filled with anger, resentment and hate.
And, we try really hard not to do that. We try so hard to find the positives.
About this, we're still looking for positives, but we are a bit calmer.
If we had written this post after the appointments were done, it would have been written through streaming tears and gut wrenching sobs.
It's been one of those weeks.
He spends a day in the hospital, going from one specialist to another.
We sometimes get some good news, or some helpful advice.
Usually, we get another form of cerebral palsy or movement disorder thrown at us. (Another diagnosis to learn about.)
Usually, appointments end in frustration, with specialists not always 'seeing' Dexter, instead, trying to fit his diagnosis into the right box. Dexter has never followed the 'rules'. He's always done things his own way.
Usually, these days end in tears.
As harsh as it sounds, Dexter is not seen as a success story.
He's not walking.
He's not talking.
He's not smiling.
He's not sitting.
He's not self feeding.
He's not a success story.
(To some people... To the people who speak in 'can'ts'.)
And, he is doing so, so well.
He has been kicked down, so many times, but he continues to get back up and start fighting, again and again.
But, this year's appointment made me wonder how many more times Dexter will have the determination to keep fighting back.
I wondered how long it might be before Dexter stops trying, because we keep setting him backwards. We keep doing things that hurt him. We keep allowing procedures, with many leading to him needing resuscitation.
This kid deserves so much, but has dealt with such incredible difficulties and life-threatening complications.
Cancer was just one of them.
(See, even after a few days, there is anger and frustration!)
A good thing... We finally sourced someone to make Dexter's hand splints. The people who wanted to get it done, couldn't. The people who could get it done, wouldn't. And so, despite 'early intervention', Dexter was unable to get hand splints made. (His wrists are starting to turn in on themselves. This will make it difficult for him to hold pencils, spoons and toys.) We've waited about six months since being told that Dexter couldn't get the hand splints. Hearing that they would finally be made was great news.
(This photo shows Dexter's turned in wrists. Without the splints, this turning in will become worse and it would be difficult for Dexter's muscles to remember to keep his wrist straight.)
**In this photo, Dexter is having a cast put on his leg, so his AFO can be made. And, see his other foot? See the colour? Dexter has terrible circulation. He always has. I can only imagine how much pain he must feel.
We hate cerebral palsy and the way it brings such pain to Dexter.
And then, Dexter's hips.
He said Dexter needs to have both hips operated on.
Last time he had this procedure, it was a single femoral osteotomy. This time, Dexter needs a double femoral osteotomy. Both femurs need to be cut. Both femurs need to be twisted into the correct position. Both femurs need to be screwed back into place.
This will mean an even longer surgery than before.
Dexter will be back in that dreaded brace, for a minimum of six weeks.
Last time, the procedure shortened Dexter's leg by two centimetres.
Last time, the procedure set him back two years in his progress with walking, sitting and standing. (He's still not caught up.)
Last time, pain medications caused Dexter to code blue. He overdosed. A medical team came running, with crash carts and emergency equipment. Dexter was worked on, before thankfully coming back to us. Lenice and Andrew watched, helplessly.
Last time, it was so, so hard.
And now, we have to do it again.
I worried for Dexter - for the pain he must be feeling and for the challenges that are coming. I worried for the work he's done with his therapies and how he will lose all the strength and muscle he has worked so hard to build up.
And, I worried for Lenice and Andrew.
I worried because I'm not sure whether Lenice is strong enough to handle the heartache. I don't know whether she can carry the guilt of Dexter needing more surgery. Her brain tells her she's not guilty, but every other part of her body feels that guilt with such intensity, it sometimes overwhelms her. She couldn't carry Dexter to term. He was born before he was steroid ready, resulting in his under-developed lungs. She is the one who positions him in his wheelchair and high low chair, his standing frame and walker... She is the one we turn to for advice.
None of us blame her.
And, her brain knows that. But, her heart... It's just not strong enough to bear the pain. Her heart has been broken again and again.
I never even considered the post traumatic stress triggers the surgeon's words would bring her. Lenice's immediate thoughts after hearing the surgery words, was of Dexter dying... Code blue. Resuscitation. Overdose.
While Lenice was in tears, the surgeon continued to talk, explaining why the double osteotomy needed to happen. Dexter had another X-ray, which just confirmed that his hips were dislocated and that surgery was necessary.
Through her sobs and tears, he listened while she explained that Dexter had already been through this, and it had failed. Already, Dexter has had a muscle release procedure, usually done when a child is 4 or 5. Six months later, he had the femoral osteotomy. This should not have to happen until the teenage years. At the age of six, Dexter was needing it. Again.
The surgeon listened. He considered Dexter. After lots of tears, he agreed to trial Dexter on medication first, but wants to see Dexter again, in six months.
Our hearts hurt with the sureity that Dexter will need the surgery.
We know the surgery will be another major set back; both legs will be shorter, the right side even more so, because of the previous surgery. Rehabilitation will be huge. Dexter cried for a week straight, last time, Dexter almost never cries! So crying for a week straight... I can only imagine the pain he felt.
The medication option isn't much better. The medication Dexter will be taking is used to help decrease muscle tone, so his muscles arent tight. Unfortunately, this will impact on all his muscles.... His sitting muscles, his standing muscles, his walking muscles, his rolling over muscles and his swallowing muscles.
We have worked so long and so hard to rebuild these muscles after the last surgeries. We have cried while watching him try to step. We have walked away from him in frustration. We have held his hands while he cried.
And, for what? It will all be gone.
Everything we have worked on... All therapies... will have been wasted...
Lenice cried a lot, last week.
She cried all across the hospital... in the appointment rooms, waiting rooms and corridors. She cried all the way home.
Her heart aches.
She is suffering from post traumatic stress.
And, she has been running on about three hours sleep, for about... six years. She is exhausted. Lenice is Dexter's biggest strength (after his own determination).
I worry that she might not be strong enough to climb yet another mountain.
I worry for Andrew and Lenice, because their life is so difficult.
We hate cerebral palsy.
We hate what it has done to our lives.
We hate how broken and hurt we have become.
Dexter's classmates and teachers were thinking of him and missing him, while he was away. They made him a beautiful card and everyone signed their name.
And, one of Dexter's classmates asked his mum to send Dexter a message, because he missed him.
This week was hard.
It was awful.
We will be ok... But, it might take us a while to find our rainbows and silver linings, again.
And, when surgery happens... we're going to need some time.
We Nearly Lost Him
Today, I Just Want To Be A Mum
Something to Say But No Words to Say It
And Then, They Whispered about Me
Brain Damage – Finding Out
Mum, Dad & Ten Years
Mum was Crying in the Ball Pit
My Walking Goal
What a Dollar means to Dexter
Stuck in a Rut
Embrace the Lion
Dexter's First Month
Dexter's Cerebral Palsy
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