He actually considered moving into Bent's for the Christmas period

This snuffle cold rubbish seems to be going on and on and on and on. Got Zack some antibiotics from the doctors, seemed to have cleared it all up for him. Had a couple of back to normal days then, poorly again. Plus Snot Witch is back to her usual snotting. Honestly I am thinking about putting them all in quarantine.

On a brighter note. We have purchased a new buggy for Zack. Well we just weren't getting along with the Tom Cross Stroller and Wheelchair Services just weren't errrm, getting along with sorting out something else for Zack.

Yes the Tom Cross was a good chair and he sat nice in it, but he didn't tolerate it for too long but worse than that it was so bloody heavy, took up loads of room in the boot and just wasn't suitable for getting him in and out of the car quickly. WCS don't seem to take into account our lifestyle and the need for something that is light and easy to use.

But hey presto, we, as per usual have sorted things out by ourselves and purchased a Swifty chair. It was  up for private sale from a lovely lady whose son had outgrown it and she only lived a few miles away. Off Zack and I popped to have a look see, he sat lovely in it and we drove away the proud owners of this......

Swifty Chair 

At the weekend we took Zack and Scarlett out to Bent's to look at the Christmas lights. I've mentioned Bent's before, the expensive, posh garden centre. They have a little model village on display complete with fairground attraction. It's my favourite part, I always want to live in the model village. Sorry I digress.

Yes, so Zack road tested his new buggy. Last time we took him to see the lights he had lots of seizures. This time he loved it. I mean really loved it. He was so happy in his buggy, we even managed to sit down have a cup of coffee and a cake (Pecan Pie gorgeous) without him sitting on our knee. Dan was so delighted at how much The Pants enjoyed himself that he actually considered moving into Bent's for the Christmas period. 

Scarlett on the other hand was not impressed. At one point she looked at me, puffed her cheeks out and let out a load sigh. What does a nine month old want in life? I hope she isn't starting as she means to go on by finding everything completely dull. Well that's not entirely true she seems to like Cher Lloyd. So does Zack. This is unfortunate. I need to rectify that travesty.

Strip just from the bottom half

What a hectic week. 


We went to collect Zack's new wheels, a Tom Cross Stroller from Wheelchair Services. It took a while for them to set it up as they had to make sure all the seating was set right for his measurements. 


The buggy is a special needs buggy aimed at supporting Zack in a better position and I have to admit once he was in it, he was extremely happy, sat upright, looking around at the world. He even smiled at us all. 


I on the other hand found it slightly upsetting. The buggy is bigger than I imagined and it was a bit of a shock to see him with a little chest strap on in this small chair surrounded by a big frame. When he is in it you know he is a child with a disability. It's hard to explain but seeing him in this type of chair makes it even more concrete that he does have additional needs. And I know he does and have accepted that he does but when it's as vivid and real as another piece of equipment in can be difficult to adjust to it.


Having said that I am now getting used to the chair. Here's a picture of him in it. See quite happy. Oh the last one was just before he decided to be a bit sick. 

We are going to test drive it this weekend. We need to purchase a hood and a rain cover for it before we can do winter adventures. 




We also went to see the Orthopaedic doctor at Alder Hey. He was really nice and had a good look at Zack to see how tight his tone was in his body. He said the likelihood is that if a child isn't sitting by two then it's unlikely they will walk. To be honest I have heard statements like this before and I take it with a pinch of salt. He's right Zack might not walk, then again, he might. He did say that he thinks he will probably be able to get around the house quite adequately but for his independence he will probably need a wheelchair. And if he can manage a power chair then we have to make sure his hands and thumbs don't get tight. Ha. Zack in a power chair I can see it now, he'd be zooming down the street up to no good. 


The doctor sent us for a hip x-ray. Dan took Zack in to the room. He came out ten minutes later, I asked if it all went okay. "Yep, fine" he replied, "The woman told me to put on a lead apron and strip just from the bottom half. I asked her if she meant me, she said no, just Zack." Dan continued to tell me that they just got his position right on the table and he decided to pee all over it, (Zack did, not Dan) the nurse said it happens all the time. Bet she loves her job. 


After the X-ray we went back to see the doctor. One out of two children with Cerebral Palsy usual have a problem with their hips and sockets because they aren't moving like a normal child should, so there bodies aren't being allowed to develop naturally. What you get are hip bones that aren't ground in properly to the socket. Zack's right hip is slightly on the edge so in order to stop it getting worse and dislocating they will consider doing botox injections so that the muscle has chance to move better and in effect move the hip socket into the correct position. 


The doctor showed us an x-ray of a six year old child who has similar conditions to Zack but has not been seen with regards to his hips. His was almost out of the socket and so he will need reconstructive surgery. I suppose by picking up on this now we could attempt to correct it. He also said that his standing frame and physio is good for him and to continue doing it. Oh and the other good thing was he hasn't got a curve in his back, he just slumps over a bit because of his lack of good head control. All babies start off curved and then pull up as they get stronger in the neck and back, Zack's curve may improve. It has so far and I think it will continue to do so. 


When we had finished the appointment we stopped in reception so I could put Zack's coat on. I looked down to see that his shoes where on the wrong feet. Yep, Dan had taken Zack in to get an X-ray and managed to get his shoes on incorrectly. I pointed it out. "Hmmm" Dan replied, "I thought they were hard to get on his feet." Poor child, what hope does he have of walking if his dad can't even get his shoe on the right way.


I am hoping that after this busy week we will calm down. In fact I said to Dan the other week I am not putting in any more appointments until after Christmas. Here's to the wind down.

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.