He just keeps growing!
Back when he was tiny, he couldn't leave the hospital, because he was too small.
Back then, we measured his milk in millilitres and were so excited when he started drinking ten millilitres of milk. We measured his weight in grams. So, so often, he lost weight.
So, we are excited to see Dexter growing and thriving.
We love seeing him doing so well.
We just need $37,000. And a van. And van modifications.
We need at least $100,000.
This is one of those times where everything seems so overwhelming.
Everything seems too hard.
Dexter's walker is too small. Some days, he can be in it and he can take some steps. Mostly, he loses circulation in his legs and has to be taken out of the walker. Some days, he loses circulation in his arms, where the arm supports cut into him. A few times, this has caused Dexter to faint and he needed to be removed instantly, laid on the floor and watched carefully.
He needs a new walker. That will cost at least $6,000.
(That blue bit, in the photo.)
Snapped. The support has now gone from one side of the head rest.
Dexter's wheelchair is getting too small and we were starting to prepare ourselves for having to replace it... But, now... it's dangerous. The head piece no longer provides the support it should. To replace the broken section, Dexter will probably lose his wheelchair for a while. He needs it! He doesn't have the option of standing up and walking. He needs additional support in his torso region, so it will be difficult to just borrow a wheelchair while his is being repaired.
We are not sure what will happen with that, yet.
He needs a new wheelchair.
We estimate that will cost about $15,000.
There are no words.
We don't have that money.
The mortgage is crazy huge and we don't have that much money.
And, Dexter still has no access to NDIS funding, which means we are still self-funding his physiotherapy.
So, without any NDIS funding, we have to find other ways to purchase equipment, for Dexter. It's not special things we want, but equipment Dexter needs.
We wish he could sit up, on his own.
We wish he could stand, on his own.
We wish he could walk, on his own.
But, he can't. He needs support.
He needs so much money.
He needs an NDIS package.
At the moment, we are struggling with the overwhelming costs that are constantly in our minds. We are sad for the things we need to provide, but are struggling to get. We are angry at cerebral palsy and the extreme expenses it constantly brings to our family.
And, we are sad.
Sad because we can't just get Dexter what he needs.
We have learned to face one thing at a time, to make the big things seem smaller.
So, we know we have a new standing frame coming.
We will have to focus on acquiring a new wheelchair. School is about to start and Dexter needs a wheelchair. Every day. This is a priority.
Then, we will look at replacing his high low chair and walker.
And then, we will worry about replacing the van and modifying it, to make it wheelchair accessible. Very soon, we will no longer be able to lift Dexter into the van; he will need to be pushed in, in his wheelchair.
At the moment, we are feeling overwhelmed and a little worried.
If anyone has a million billion dollars...
In the next photo, Dexter is trying to sit up straighter.
Today, he put such amazing effort in to his physiotherapy.
Dexter never gives up! He is so determined.
So, we won't give up, either.
We are not asking for money.
We're just in one of those 'bad patches' and we've learned it's healthy for us to express our concerns and worries. We'll be ok.
We just want to be honest and keep it real.
This cerebral palsy business is tough.
When Six is too Young to have a Disability
Why Lifting Me Up Feels Like Letting Me Down
$1500 worth of Gift Cards
Dexter Was Walking - dreams
Epilepsy - First Seizures
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
Dexter's First Month
Dexter's Cerebral Palsy
Who is Dexter?
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