He's just beaming

Zack has yet again managed to have a busier social life than myself. 


Wednesday morning meant an early get up for a spot of light Hydrotherapy. The sessions have been introduced by the wonderful ladies in the vision team (you know the ones that also run the play group for children with visual impairments.) Honestly they go beyond what they are meant to be doing and if it wasn't for them, we wouldn't have these much valued groups.


The hydrotherapy session was taking place at a special needs school in Warrington. They have a small pool there which children can use to get some extra therapy in very warm water. By the way it isn't just the water that's warm the whole blinking place is set to tropical heat weather. 


Zack and I arrived all bundled up having faced the windy, rainy weather outside to get changed in a changing room that was so hot I thought I was going to explode. One of the teachers took him to the pool and at first they laid him on a floaty mat. I knew he wouldn't like that as Zack likes to be upright in the water so he feels safe and secure. Sure enough grabby hands appeared, I suggested we put him in his swimming seat ring. Just a normal baby swim seat but Zack loves it. Once he was sat in his throne he could have quite happily floated around the pool for hours. Unfortunately a child can only stay in for twenty minutes due to the heat so having enjoyed his relaxing water therapy out we got, dressed and thrust once more into the great british autumn weather.  For once I was glad of the cold, Zack and I looked like beacons in that school.


This week Zack got fitted for some Piedro boots. These are to boots made to help support his ankles and feet when in his standing frame. Amazingly they also arrived this week so having been measured, fitted and tried on we are now the proud owner of some funky little shoes. Picture below.

On a secondary note to our visit for the shoe fitting. We had to go to the hospital for these appointments and normally it is an absolute bugger to find a parking spot. Well hold on, Zack now has his own special blue badge, therefore, when his chauffeur is driving (that's me), we can park in a disabled parking spot. Hallelujah. First appointment we parked right outside the door, second appointment, again, right outside the door. Wow, this badge thingy makes life really simple.




And to finish the week off on Saturday we took Zack to the Elisabeth Svendsen Trust It's a charity that specialises in providing donkey riding therapy for children with disabilities. They have a few centres across the UK and one in Manchester, which is where we found ourselves on Saturday morning. 


Dan took Zack in to the arena to meet his new friend, whose name I can't quite remember. Zack was the smallest child, youngest child and had the smallest donkey. At first his little legs couldn't fit over the saddle so he rode bare back, check out cowboy Zack.  The staff also gave him a supportive vest to wear to steady his posture, Zack that is not the Donkey, I mean it's not like the Pants is a hefty weight. 


I have never seen a child look so bewildered, he knew something was going on but he couldn't figure it out. Part way through the little session they took the vest off and he seemed to relax more. He had to ride his donkey around the arena and collect different colour rings then place the rings on a pole.


Then they ran a little with the donkeys. Zack loved this, his face lit up and even the teacher who was with him was saying, look at him, he's just beaming. He did nearly end up on the donkeys neck though but she didn't seem to mind. After it had all finished the lady leading the donkey said it was an excellent first ride, he had done brilliantly. 


What a fantastic charity, you can see how much all the children that take part gain from it and to think it's only down the road from us, we shall definitely go back again. But Zack nor his daddy will not be having a donkey of their own. No way, no donkeys in my back garden. They don't half make a noise.

Hey look at me

Took Zack to two play groups this week, the lucky boy. 


First one was the monthly group run by the vision specialist team. It was good, they had a bonfire theme but Zack was more interested in a little girl a year younger than him. She is very sweet but gets upset a bit as babies do, well he was fascinated by her crying. Wasn't interested in the fact he had a furry hat placed on his head or was shown a branch to represent the bonfire, nope, he was all about the ladies.


That same lady came along to play group number two run by one of the mummies from play group one (are you all keeping up).  Zack had the best day ever at this play group two, he loved it, he was smizing at everyone (smizing = smiling with his mouth and eyes, see Americas Next Top Model for reference). He even rolled over from his back to his sides, the little show off. 


At one point I put a little plastic frame over him that had toys dangling down. Toys, I don't need toys. Watch this, and he grabbed hold of the side and tried to pull himself up, all the while looking at his new little girl pal. If he could speak I'm sure he would say, hey look at me, look at meeee, look what I can do (in a Stewie Griffen voice, in my head that's what Zack sounds like). 


He was even a good boy in his car seat. What a delight.


Feeding is continuing to go well and I have now stopped giving him that horrid Infatrini Energy and no sick. Nope no sicky. It's fantastic. We still get a teeny bit here and there but over all it's a great improvement. We are now on three meals a day, two drinks of whole milk and a pump feed of just water at night. Amazing. He is even going to bed at around 8pm and sleeping through until 6.30am. Although I can't help but think that as I type this next week I will be saying oh God, what's with the waking in the night, or oh no the sickness is back. But for now, the Pants is just brilliant and amazing. 

The ipad

Perhaps the Pants might get one of these when he is older.....seems like they are a good tool for communication.

http://www.nytimes.com/2010/10/31/nyregion/31owen.html?_r=1

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.

Jealous me. Not much.

Right the thing is I put in all the hard graft with Zack. I do all his therapy, his physio, play games with him, take him to playgroups, take him for walks, show him things, read to him etc etc. I don't mind doing all of this, in fact I love it and I am very lucky to not have to go to work so that I can spend my time helping him. 


But, why, when his dad is out working hard to look after the pennies does he get rewarded with the good stuff. Yep. The other evening Zack decided that now would be a good time to show how he can roll from his back to his side. 


I have been trying to get him to roll from his back to side for ages. I didn't believe that he could do it. So Dan showed me or rather showed off at how he got Zack to roll. And the little bugger did it again, both sides. It's was brilliant and a huge step forward.


Oh and before that Zack was on his mat and Dan was chatting to him and Zack was giving him lots of smiles when he did an agoooo noise back. Right. Now you decide you'd like to chat with your daddy as well. Hmph.


Jealous me. Not much.


(Very proud of Zack though. The sod hasn't done any rolling for me since the other night may be he's saving sitting, walking and bloody talking for his favourite person, Daddy!)