Best day ever.

The other day I think Zack had his best day ever!


He woke up in a lovely mood, had a nice breakfast consisting of one yoghurt, one bananna, one weetabix, 14 almonds and some milk.


Got dressed in his summer white trousers. He looked all Miami Vice (even wore his flops, that's flip-flops to you and me).


Then he went off to see two of his little friends for a play-date. I am sure if their mummy is reading this blog she won't mind me posting about it. They are two gorgeous, lovely little boys, the same age as Zack and I think that they are so wonderful with him. 


Zack was lying on the grass happy as anything and one of the boys walked by Zack and he just grinned, in fact he spent most of the morning grinning. He had a go on their trampoline and loved being bounced up and down. He watched Mickey Mouse Clubhouse with them, smiled through that, stroked their doggy. He loved it all. And the sweetest thing was when the boys were playing on their little trucks that they sit on and push round they even brought Zack one over to play on. 


This is all very interesting to me because I haven't really seen Zack react to children like our little mates. He really loves being with others and it was great to see him so happy and relaxed. 


Then we came home. Had a spot of lunch and played in the garden until the early evening.


Later we all went for a long walk and Zack went in his Tom Cross Stroller. Amazingly he loved it and didn't moan at all. 


Here's a picture of Zack relaxing after his best day ever.

Now the bad news. Best day ever ended when the Pants wanted to carry on best day ever until 3am. Yep. 3am. That's when he called time on it and finally went to sleep. Little git. Made him get up at 7am though. He is presently asleep in bed and has been since 8.30pm. Mwahahahahaha. Sucker.

Something I stole

Here is something I have stolen or rather with their permission borrowed to share. This was written by a lovely lady who has a gorgeous little boy with disabilities. I think it explains perfectly how easily we take for granted the ordinary things in life and how for some a smile is one of the most complex things to perfect.

A CP Smile.

                                                                                                                                                                                                                                       The complexities that go in to a simple movement are unfathomable!

Something as simple as a smile, to you or I is no great undertaking.

To a child with a damaged brain, it is as complicated as reaching distant galaxies.

You have to be able to look, and you have to be able to see....and the two don’t always come together.

Then you have to register what you have seen, and send a message to the part of your brain that can then respond.

That message is like a Chinese whisper, and often gets lost in translation.

If, and this is a huge if. If that message gets back, you then need the control, desire and ability to reciprocate.

But the muscles have a mind of their own, and like a petulant child, refuse to co-operate.

Of course you must also understand the intention of the smile, or how do you know it is something you might wish to reciprocate.

And then it happens....you smile....and the journey is forgotten....only the destination is worth remembering.

Only for some, the journey is long, seemingly impossible. There are twists and turns and unexpected diversions.

Some of the bridges are down, and the only way through is to rebuild from the ground up.

So when you finally reach your destination, and you have got there with more than your share of scrapes and near misses....you will understand the celebrations at your arrival, for it has been long awaited and the stuff of dreams for many a year.

Zack laughing

A short video of Zack laughing his husky laugh. Not looking my usual glamourous self but have to post on here as I think it's the best noise in the world. Oh and the high pitched noise that sounds like I am communicating with Dolphins is me telling Zack we are going swimming....well he doesn't have his hearing aids in!!!


http://www.youtube.com/watch?v=qiGOogPlVgI

all of sudden big smile and a gggghhhhhhhh

We think Zack enjoyed his first Christmas, well, we think as much as guess he enjoyed it. One thing is for sure he got spoilt rotten. I have never seen so many presents, of which, I obviously had to unwrap for him. It was never-ending, so much so I got a sweat on, Zack on the other hand had his usual I am totally not bothered about any of this look on his face. We had all just about got dressed and sorted out when Grandma and Grandad Gould visited along with Great Granny Fairhurst. This meant more presents. After an hour of more treats we went off to Nanny and Grandad Price as we were having our Christmas lunch with them. Well you can't expect me to cook, I have a young child now. Plus I would never have gotten round to the cooking given the amount of unwrapping I had to complete. We had a lovely meal and Zack was very well behaved, graciously having a nod in his bouncy chair whilst we ate.

On Boxing Day we decided to brave the sales at stupid o'clock in the morning. I know how very sad. Zack thought the whole thing was amusing and spent the morning asleep and then awake smiling at the Christmas lights. Or he could have been smiling at the fact that there was a mile long queue of people trying to get into baby Next. Now that is ridiculous. And no, I did not queue.

In the afternoon we went to Nan and Grandad Gould for more eating. Again Zack was very well behaved and even cracked a few smiles here and there. Unfortunately his Grandad missed them but his Great Granny got three.

The rest of Christmas has been a bit of a blur but it has been lovely having the three of us at home and not having to go to one single appointment. It made me realise that I am definitely not going to do more than two a week. At the very most I only want one a week so come the new year, the foot will go down firmly.

We had some more laughing from Zack. Today in fact. Dan was on his way out in the morning and said that Zack wasn't giving him any smiles when all of sudden big smile and a gggghhhhhhhh. Oh. So I started to rub Zack's hand again (it's a new thing we found he likes) more ggggghhhh so I shouted for Dan and he actually heard and saw the laugh. Zack laughed quite a few times and I am so glad Dan caught it. Here's to lots more giggles in the New Year.

the steroids did not work

The smiling still continues. It continues at 3.30am in the morning when Zack woke up and thought it would be nice to smile at his mum in bed. Not daddy though. Just mummy. Who now spends most of her time entertaining him with loud shouting, bad singing and rubbing of arms and legs only because this gets the most smiles and every one of them still amazes me.

After our good news we had some bad news. The last EEG that Zack took showed no change, if only minimal, to the hypsarrhythmia in his brain. This meant that the steroids did not work. I said that. I knew from the beginning they weren't working so the next line of attack is a to try the next drug, Vigabatrin.

We went to see the doctor to discuss this medication and Zack's treatment. Apparently steroids are the first drug of choice in treating infantile spasms, followed by Vigabatrin. Due to infantile spasms being so uncommon in children not many studies have been done in the use of medication and the ones that have showed that those two drugs seem to work the best. The steroids however, did not work for Zack.

It is with huge disappointment that we are having to give Zack this drug. As well as making him sedated for the first couple of weeks another side effect is that it can damage the peripheral vision to his eyes. This is has only happened in a small percentage of children and it is thought that it happens usually when children are on the drug long term. So the plan is to give Zack this drug for six months. Hopefully this won't affect his vision. We have had to way up the chance of allowing Zack to develop to the best of his ability against the possibility of losing some of his sight. It is a hard decision but as Dan has said we don't know how good his vision is so if this drug works it could increase his vision and his ability to do other things.

To be honest I don't feel like I have a choice, I can't leave him as he is without trying to stop the infantile spasms. Whilst the actual visual spasms we see have greatly reduced his brain is constantly fitting because of the hypsarrhythmia, this in itself is making it harder for him to understand or do anything so we have to give him a chance. If this drug doesn't work then we may be looking at steroid injections and after that well, I don't know. I pray and hope every day that something will work, deep down I have a good feeling that we will get there, eventually.

We have decided to start the new drug after Christmas. I just want to have a couple of weeks without new drugs, appointments and worry, plus it isn't going to be much fun for Zack if he is sedated for two weeks. So come the new year, come the new drugs and fingers crossed more good fortune for Zack.

Zack smiled and laughed

Zack has been working on his smiles. He does it every day now. Not all the time but a few times a day and it is wonderful. We even had a big break through.

I took Zack for his EEG at Alder Hey. He had finished his steroids the day before and he was having his third EEG done to check whether the hypsarrythmia had stopped. We got taken into the room and the nurse went off to get him some toys. Oh, okay I said thinking well he isn't going to be very interested in them but go on then. She came back with an assortment of noisy toys and I picked up this little clacker toy that when shook made a loud clacking sound. So I nonchalantly waved it in front of Zack's face and there was the biggest grin ever. Well that was it, shake, shake, clack, clack. Followed by oh my God, he loves this, where did you get it, I'll have to get him one. The nurse was kind enough to give us the toy as she thought it was so lovely that he was smiling and obviously loved this new adopted toy. He then proceeded to sleep through his EEG and then off we went to see his Grandad. (Nanny was off on a cruise and wasn't being ignored in case you were wondering). So I told Grandad P. about his new toy and shook it in front of his face......nothing......not interested. He might be hungry I thought, I fed Zack and he seemed a little more content, we tried the toy again. What a response. Zack smiled and laughed. We would shake the toy, wait and then he did this cute little laugh sound and even made some proper baby noises. The other big thing was, he didn't have his hearing aids in, it was fantastic, he continued doing this quite a few times I couldn't wait to come home and show his dad.

I got home, Dan came in, I plonked Zack on his knee, watch this I said. Clack, clack, clack............Zack started crying. Oh. I'll try again. Clack, clack, clack, nope not interested. I explained to Dan what had happened. But from that day on Zack has not reacted to the clacker toy like he did at Grandads. But what he has been doing is finding other things interesting like a jangling bell, rubbing his hands, talking to him. He will smile. Its great and a big step forward.

Other good news for this week was that we went to get his eyes checked out. The optician took a look to see if he needed baby glasses. He doesn't. Everything looked normal. We then went to see the consultant who looked into the back of the eyes and everything looked okay there. She said that we need to continue with stimulating his vision as the development of it may be a bit slow due to his injury but there is nothing wrong with his eyes. At last an appointment that we went too were we haven't come away with bad news.

We are now just waiting on the results of Zack's latest EEG. His seizures have now either been the same in number or slightly less, either way they haven't stopped completely.

Zack had his physiotherapy and did very well. She said that it was the most awake she had seen him and he was very relaxed. He even managed some smiling whilst in tummy time and he hates that. We took a look at his high chair and he promptly displayed his ability to try and escape from it but we agreed to try and sit him in it in short bursts to get him used to the new seating arrangement.

Zack went to his first Christmas party the other day and slept through most of it. The party was organised via some wonderful parents from the forum Special Kids in the UK. They did a great job and it was really good to meet other parents who have children with special needs. It was lovely to see the children enjoying themselves, disability or no disability. Shame Mr Pants slept through most of it but by next year he will be much older and possibly more awake!

and there it was, a proper grin

Happy Halloween...........

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!

It was a wide eyed open mouth smile

This week has been both a pain in the backside and an absolute joy. 

It seems as I continue writing this blog that there only exists in Zack's world me and his dad. There are, of course, many, many other people in our lives but I don't mention them here. This blog can be read by anyone, and whilst I am happy to share the experience of our lives with Zack, I don't think it's right to mention other people without their permission. 

This leads me to the pain in the backside part....As much as I want to write about the complete idiots that sometimes don't think about what they say I can't. So the bad stuff that happened this week will have to be written about somewhere else. Sorry about that. Maybe I'll combine them both one day, for now it stays somewhere else.

But here's the good stuff........ever since we popped in Zack's hearing aids (his hearers as we now affectionately call them) he has been responding to his environment a bit more. I have discovered a new game he likes to play. I call it whooooooh let's pull up the Pants. It involves Zack lying on my knee and me pulling him up to a sitting position with his hands. This is followed with lots of hellos and clapping of his hands. This amuses him so much so that we think (well I know for sure) he smiled at me. It just so happened that Dan saw him do it at the same time. It was a wide eyed open mouth smile. Dan said it was nearly there, I know it was there. It was fantastic. 

We had a nice visit on Friday from the vision specialist teacher, she brought with her another new recruit to Zack's growing band of helpers. This lady was a rehabilitation officer with a specialism in vision. They were very impressed with Zack's pimped up Little Room and gave me some more good tips about laying him on top of different materials so that he can feel more things beneath him. They also suggested putting something at the bottom of his feet which he could press against, this again all helps to make him more aware of his environment. They were very impressed with his action in the little room. He did his best I'm having a good look at this toy stare and a good lot of arm and leg action. He did even more when he had his hearers popped in. They both said that his vision is even better with them in. When he sat on my knee, he held his head up for a good while having a look at one of the pictures on the wall. I was very proud of him.

In the afternoon we went to visit the new Brainwave centre in Warrington. This was a place we had considered taking Zack but it was down south so we were pleased to hear that they had opened a centre in the Northwest and it is only 20 minutes away. It takes an integrated approach to working with your child as an individual and looks at all aspects of physical, sensory and cognitive development. Basically I think you have an assessment over two days with physiotherapists and occupational therapists who then give you a programme to do at home with Zack, with a view to improving his condition. They work on the theory of neuroplasticity, that the brain can find new ways of working. I could go into more detail but if you're really that interested here's a good website....http://faculty.washington.edu/chudler/plast.html

I think for now we are going to wait until the new year if we decide to take Zack along. By that time he will be a little older and they will have been up and running for a while, and had enough time to iron out any teething problems.

Dan had a daddy and son day on Saturday. He took Zack off to the shops to buy some inner tubes....mmmmmm can't say I would be that thrilled about shopping for inner tubes, but each to their own. I took the opportunity to dye my hair and have the house to myself......They came back an hour and half later, the Pant's was not happy. Apparently he enjoyed the ride out in the Mazda, liked listening to Metallica, was good in the shops but then got fed up on the way back as it was a bit hot and he had a wet nappy (Zack not his dad). Oh well, at least I managed to get the hair dye on my head.