They also suggested feeding him slowly over-night

Another busy week. Can't remember half the things we have done but it's been busy.


We met with the gastro doc and full feeding team at Alder Hey. To be honest we didn't really get much further other than the suggestion of putting Zack back on his reflux meds. He prescribed a new one instead of the Losec so we don't have to mess about dissolving medicines that won't go down tubes (another story). They also suggested feeding him slowly over-night. Other than this and trying out different milks the only other option was on operation called a fundoplication, which in simple terms means that they tie the stomach inside to prevent vomiting.


The Dr. wasn't recommending this and the feeling we got that it was something he didn't want to do as we might end up with a child that just wretches a lot. I know for other parents it has worked well for their child but I think for now we are going to continue down this path of the meds and the slow feeding.


We have given it a go for two nights so far. Oh, it's so not good for my sleep. Zack has woken twice in the night to puke, usually about 5am. The problem is once he is up then, he's awake and won't go back to sleep, worse still he wants you to get up so that you can chat to him. And if you don't he just pummels your back with his arms or legs which amazingly stretch like Inspector flippin Gadgets.


We said we would give it a week of trying this technique. If it doesn't work I  am going back to the old pattern and maybe it's just something we will have to live with. Apparently it is all to do with muscle tone, Zack's internal muscle tone isn't strong enough to hold down his food, quite common in children with CP.
Zack has also not put weight on and may have lost a little. Will be asking the dietician for something I can add to the milk for extra calories as there is no way he will tolerate more liquid.


What else? Oh yes, Zack went drumming on Saturday morning. Yep, our friends at Families United organised a man to come along to the Saturday Fun Club and bring with him a load of different drums. The Pants loved it, he loved listening more than playing, but it was a really good session, plus we met some more families which is always a good thing.

I am still ticking the same yes he can't do that on his own boxes.

First things, Zack baked. 

I ate the cakes! Delicious.

On to more important things.....


Zack and I went to check out some wheels the other day. You see he has a lovely Quinny pram that he doesn't much like any more and a really cheap stroller that he loves but doesn't support him very well. He tends to end up leaning to one side in it, so we prop him up with some rolled up blankets which isn't a good look for such a cool little dude. 


We went to visit the good old NHS Wheelchair Services and after being kept waiting for half an hour we met with two very pleasant physios one who cuddled Zack a lot and told him what lovely hair he had and another who looked through a catalogue (Zack decided he'd do a big spit cough in his face, well you should pay more attention to him.) 


It was decided that a Tom Cross Buggy would be best for Zack. I asked if there was a choice or if I could put some pennies towards one. They advised me that whilst I could as they offer a voucher scheme, it might be best to wait a bit as Zack is still little and growing. I could end up wasting my money on something that might not be of any use to him in a years time. Whereas if they get it for me and he doesn't like it, then I haven't lost any money. Also if anything goes wrong with it then all the repairs are done at the offices. 


Here's a pic of one (scroll down until you get to Tom Cross Stroller), the bits of padding and support can be taken away depending on what the child needs, for instance Zack won't need a middle pummel bit. 




Tom Cross Stroller



We just have to wait for six to eight weeks until it arrives. I am hoping Zack will like it as it will offer him much better support and perhaps mean we can go out for longer walks too.


After that appointment we dashed over to a physio session. All the stretching and rolling about on a gym ball meant that Zack decided to throw up a bit of food on the physio and mat. Well he was doing a lot of lying on his tummy. 


Talking of this puking, the new food we are on is finally going okay. He is still sick but the quantity is a lot less. I have stopped all his reflux meds as they were not making one dot of difference and have finally got an appointment to see the gastroenterologist at Alder Hey. I am hoping we can try something to stop the sickness and to get to the bottom of why it all got so bad after he was ill.




I am having to fill in Zack's Disability Living Allowance form again. We have to do this every year and one year on I am still ticking the same yes he can't do that on his own boxes. If you dwell on the fact that in the eyes of the DLA not much has changed it's pretty depressing reading. But then they don't have boxes for the fact that his vision has improved, his hearing has improved, he smiles and laughs with us, he likes to stand up in his standing frame, he can tell us that he wants us to carry on playing the same game. The form is just interested in the basics, movement, care, illness. Still if it means he can get some financial support that will help towards equipment or therapy then I can fill the form in without sliding into mild depression.


One last thing, Zack has become a right stroppy bum over the past couple of weeks. We can't work out whether its his teeth, his tummy, or if he just wants to be constantly entertained. One things for sure this boy can cry like no other baby. It's almost as though we have been spoilt with a child that's been perfect for a year and half and now he's decided to show us how temperamental children can be. In some ways it's good, it's good that he knows what he wants, it's good that he is becoming so self aware and a little bit frustrated. It's not so good for my ears or my back (he likes to be carried round the house, it's the only thing that will shut him up).


Oh and finally, finally. Zack went to his first wedding at the weekend. He just went to the church bit, where he then fell asleep throughout the service, woke up at the end and then decided to cry all the way to his nan and grandad's house. Still he looked nice. 

I decided not to take him to the whole day that would have just annoyed him even more. There were a lot of young families there and they had their children sat at the table, Zack could have come too if we wanted but it's just a bit tough on your own. Daddy was best man you see. Sometimes I wish it was easier to take him to places on my own and that he could experience things as other children do but what's the use in thinking that it doesn't change the situation. I still have the coolest son ever.........no one can top his hair or his eyelashes or the fact that he always smiles at me in the morning. But most of all I love him just the way he is plus I got to enjoy a lovely meal  without him sat on my knee. 


Here's a pic of him with his daddy.

And one of him working his Amish look...

Until next time so long readers.

I swear if he could stick two fingers up he would have done

Today Zack went for another check up on his eyes. We first visited the eye lady who holds black and white paddles in front of Zack. She had a student with her and told him how fantastic Zack was doing and how he really responds at playgroup etc. 


Zack took it upon himself to completely ignore her and the black and white paddles, in fact, he even did a couple of yawns to show how bored he was, not very impressive. She put the drops in his eyes that enlarge his pupils, he really didn't like that. 




We went back into the waiting room to wait for the eye doctor who actually looks behind his eyes. This time when we went back in he purposely tried to avoid looking anywhere but her shiny light. In fact they thought he was very clever at all his avoidance techniques. 


She said that it's difficult to say what he can see but his visual impairment is cortical meaning that there is nothing wrong with his eyes it's just that the messages are not getting to the right place via his brain. She asked if I wanted Zack to be on the visual impairment register. They explained that it means it will help to ensure that he gets all the support he needs, especially with regards to school. Paddle waving lady also mentioned she thinks that you can get your TV license half price. Well where do I sign up then?


That wasn't really why I signed up, I did it because if it means it makes it easier for us to get him the help he needs or into the right school then that's great.


So now Zack is registered blind. However, he was taking the mick that day, as soon as we had finished I picked him up and over my shoulder he opened his eyes wide and looked at them all. They all stood there and said oh well look at him now he can do it when he wants to. And with that he left the room and smiled at them. I swear if he could stick two fingers up he would have done.


What's more when his dad came home he went over to say hello to him and didn't say anything just looked at Zack and smiled. Zack recognised him and smiled back. So much for the register!

You get a photo taken

Well Zack went to get his feet measured at the weekend and ended up with his first pair of shoes. 


We needed to get his feet measured for some Piedro boots which he might need to wear when he is in his standing frame. What we weren't prepared for is the excitement of the first pair of shoe buying. The nice lady in well known shoe shop which shall be not be named ( no free plugs here, ha! as if I have a million readers) did the measuring. Three and a half H he is and nice lady brought out a selection of shoes to try.

We picked him some cute ones and then she suddenly appeared with a camera. Apparently, when it's your first shoes you get a photo taken and it's then popped on a card saying first shoes. The Pants looks sharp as a button on it, Dan looks in shock!  I think the shock may be at the price of the new shoes that I seem to easily be purchasing. "They cost more than mine!" he commented, "Oh come on" I said, "they're his first shoes, look he has a picture." The Pants and I were very excited about the whole thing, Dan was still wondering how much wear he would get out of the nice shoes. 


Oh whatever, look, here they are.....very cute. (Also note my scummy foot)

As promised here are some pictures of Zack in his standing frame. Notice, standing in new shoes! 

This is my 100th post. I feel that there should be a fanfare or trumpets or at least a party popper. Go on stop reading and throw a streamer.