Reality Bites

Talking with a friend the other day, she pointed out that I have never really written about the finer details of Nico, his prognosis and the reality of our day to day life... now and in the future. There have been allusions to things here and there, pointing to a few struggles but nothing concrete. I am not sure why.

So here we go. The Reality.

When Nico was born, at 24 weeks and zero days, 710 grams, he had or he developed a brain haemorrhage due to his prematurity. It was classified as Grade 2 but it resorbed and we thought that would be the end of it. Little did we know that this would leave a scar and 9 months later the first whispers of cerebral palsy would come about. As it can not be tested and is just something diagnosed by watching development, we never got a sit down diagnosis. It just evolved like Chinese whispers, I mention that the neurologist had said possible cerebral palsy and slowly the "possible" just dropped out of everyone elses conversation. Except mine and my husbands. We took a little longer to lose that.




6 weeks old


What does this mean for us right now?

Nico has very little control of his muscles. He has enough muscle tone to hold up his head and body but he can not control it so will either be too relaxed (floppy) or hyper extended and completely rigid, with his head and arms all the way back, like superman. He next to  never faces the middle, he will always chose to hold his head to one side, but the side changes. It makes him really hard to hold and carry around as you really need to hold him with two hands. Even if he is relaxed, you never know when he is going to fling himself into rigid mode. You have to forcibly break the lock of his legs or hips to get him to relax again. Getting him dressed is like trying to get one of those plastic dolls dressed.. but one that fights with you. His legs kick and his arms lock.

He doesn't play with things and he doesn't have the instincts to put his hand in his mouth. It must frustrate the hell out of him as I am sure he would love to play. We have a loan toy from his Early Intervention group which is called a switch toy. It is a regular baby toy (in our case a spinning type one) but it has been converted so that it has s giant button that is very easy to push. At  around $400 dollars per toy, I can't envisage us ever owning one, let alone more.   Heartbreaking thought, a child with no (useable) toys... and he really does seem to understand what to do and will concentrate really hard at times. So precious. Hopefully we can borrow one more often, but of course they are in short supply and needed for therapy sessions




Playing.. with encouragement from Big Sis.
Tee read "My dads car is faster than yours" hehehe.




Feeding is up and down. He is offered a bottle at every feed. He often refuses completely, other times he can drink upwards of 100ml. We just put any remaining feed through his PEG pump. If he doesn't really drink anything orally, the PEG will take about an hour to give him the 240ml. the plus side is, he can feed in the car while I drive, I can go and do dishes while he feeds and if he is too tired, I can just feed him while he sleeps. As I write this, I realise how crazy it is that this is just normal to us. Normal that there is a lilo valve in my little mans tummy that we just open and close to make sure he gets food enough to sustain him. Normal that if I go out for more than 4 hours with the kids (which almost never happens) I have to pack a little machine the size of a desk radio, a pole, a special bottle and hanger, a tube for the pump and a connector tube to attach it to his tum.  In a good mood, Nico DOES eat soft mushy food really well. I love to give him rusks and toast etc but since he doesn't hold it for himself, it is a chore.

In a week, I would say 3 days are bad days. Days where Nico cries more than half the time and regardless of what you do, you can't make him happy. He will be a bit quieter when being held but still voicing displeasure over something. Frustration perhaps. He is not stupid, he is not brain damaged, he doesn't have an intellectual disablitly He can think like any other baby of his corrected age. Can you imagine that kind of frustration? That kind of wanting? That kind of restriction? Knowing what you want and need but having no way of geting it or telling anyone, I would scream too.

Nights swing in favour of the bad. A good night is 3 wake ups.. or by some kind of miracle, less than that. A bad one could involve not more than 1 hour straight sleep at a time and an average of 1.5 hours with a few 2 hours for good measure. It is torturous, there is no other word. With a 3 year old munchkin to look after by day, there is little time for catching up rest. I walk around like a zombie half the time, broken conversations, a scatterbrain memory and no motivation to do anything. I would love to get to the bottom of it but the only answer we seem to get is "He will grow out of it"  which just makes me want to reply "Well, what if he doesn't just grow out of it" in a really nasal snarky mimicky patronising tone. The last week or two has been a good/bad/good/bad night pattern which has left me feeling a little better but somehow also makes the bad nights worse. It's like because I know he can do it, it grates on me more that he is not. I have been prescribed a sedative for him but i am reluctant to use it due to the side effects and addictive nature. He is barely one year old corrrected, a sleeping pill???

What does the future hold?

We will not know what he will be able to do until he does it. All we know is everything he does, will be a massive effort for him. Initially the speech therapist had said "We'll most likely be looking at alternative forms of communitcation" and knocked me to the floor. I had never even contemplated speech issues before. I was too focused on the physical. Last week she said, in a positive tone that we may get words from him yet. I wanted to cry. not because I was overcome with emotion exactly, but coz I realised how unfair it was for that statement "We may get words from him" to be such a big deal. How ripped off I feel, I can not even explain. Being robbed of pregnancy at 5 months was bad enough. Now I may be robbed of hearing my little mans voice too.

He won't be walking for a long while, if at all. Saying he will be in a wheelchair doesn't seem right for a child who doesn't look out of place in a pram... but I guess he kind of is/ will be. He still has a stepping reflex and he seems to bear weight well on his feet so I hold hope. He may be in a walker, depending how the head and trunk control goes. I saw a great tee shirt on line the other day, "Walkers: Not just for Old People" I doubt much will stop me getting him one of those, it is genius.

He is extremely unlikely to be involved in mainstream shool and if we remain in the area we are now, his school will be the Nepean School, 45 minutes away. Thankfully there is a bus but I can't even picture a tiny 5 year old, most likely in a wheelchair, being carted off to shool on a bus, even if it is a private one. The school sounds amazing and on top of CWSN teachers, incorperates team of physio and occupational therapists.

So that is the bad side of the truth. The harsher realities of my day and what I get to contemplate 24/7.  As I have said previously, overall though, I am NOT miserable. My children are the best things in the world and as much as I would change Nico in a million ways if I could, I love him as much as any mother loves their child, regardless. His smile really does make you forget he is anything but a perfect little creature.