This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Zack has been enjoying his first Halloween, really it's just a chance for me to dress him up in a ridiculous costume for the day, not sure if the Pants is too keen though.
So back to the week of busy times.
Wednesday was the Physio visit. This our third Physio in 6 months. We have met her before in the early days, I am hoping she will stick with us so she can build up some kind of idea as to how Zack is doing.
As Zack's PEG was still sore he couldn't do any tummy time, so she went through some basic stretches and then showed me some new rolling skills from back to side. Zack didn't mind all this too much and she said he had been a good boy throughout. We talked about seating and I said he only has his bouncy chair which he never used to like but now loves. She said that she will speak to the Occupational Therapist about getting us a special baby chair that has some extra padding in it to keep him symmetrical. They even come with attachments to make them into high chairs. Great I said I was after buying something to sit him whilst I try and feed him, that will save me a few pennies.
Thursday was our appointment to see the neurologist at Alder Hey. It was just an appointment for Dan and I to take a look at the images from Zack's MRI scan he had done when he was about three months old. The consultant was really good and went through the images, the large amount of damage caused by the lack of oxygen showed up as dark patches on the scan. This is where the cells have died. Basically the neurologist told us that the damage to his brain was global, it has effected everywhere so as well as two big dark patches in the middle there is also little bits of damage all over his brain, it looked a bit moth eaten. However, whilst he told us that the damage indicates severe disability he doesn't know how Zack will do in the future. The MRI scan only shows him a picture of the damage it doesn't tell him how Zack's brain works. Some children can have severe Cerebral Palsy and show no damage to the brain on an MRI scan others can show lots of damage and not be as severe. I don't understand it all but what I do get is that the damage explains why at the moment Zack can't do certain things that a baby of his age would do with ease. In truth I don't know what he will or won't do but that will never make an ounce of difference to how much we love him.
We also discussed his seizures. The consultant wasn't too worried that they had increased slightly. He said that when a child gets a virus (as Zack has head a couple of weeks ago) the seizures do increase and stay that way for a couple of weeks after the virus has cleared up. He said that if they increase further or become more prolonged to let him know, but in terms of how we described them, they won't be doing him any harm. We mentioned the new ones we have seen, the ones that make Zack cry. He said it is all part of the infantile spasms and the crying is just part of the seizure working through the body, it's just the tail end of it and nothing to worry about.
He is a lovely consultant and understands the parents as well as the children. I am glad we have met with him and that he is looking after Zack in terms of his seizures, it's good to have some confidence in the health professionals that look after your children.
Friday was a free day but a good day. It was early in the morning and I was in the back room on the computer. I had left Zack's bedroom door open so I could listen out for him as he was still asleep in his cot. I suddenly heard a clucking sound, ignoring it I carried on. It got louder. I then realised who it was. I went into Zack's room to find him wide awake, happy as anything clucking away. Helloooo I said loudly, and there it was, a proper grin. Okay he had his tongue between his gums but it was a grin. Ooooooh are you smiling at me I said as I touched his hand. Again a big grin and then another. It was fantastic, he was pleased to see me and knew it was me. The rest of that day was great. He was in a lovely mood and we had a great time going for a walks and playing in the lounge.
I also chose this day to try him on his new milk. He has now been given something called Infatrini, which is all he needs to grow big and strong. It's full of vitamins, minerals and calories that his body needs to develop. He has been on Enfamil AR since being in hospital. This was given to him because he kept refluxing and then couldn't breathe because he couldn't' manage his secretions. The Enfamil has added thickener in it to lessen the vomiting, it basically thickens in the stomach making it harder to come back up the other way. I was a bit nervous about the new food in case of huge vomiting, however so far so good. He seems to be tolerating so hopefully we can dump the Enfamil and stick with our new tasty milk, although I the end result of his new diet really does pong to high heaven!