How do I feed a baby with better grip than me!?

Ok ok so I am very naughty and have not blogged for a few days. Life really is a bit bonkers at the moment.

Both my husband and I have major joint breakdown. We are swallowing as much pain killer as is possible in order to keep functioning physically but not so much that we mentally are zonked out! I think we are both in line for ankle and knee replacements and so we are playing lottery as to whose name is drawn out of the NHS hat first for a joint upgrade.

In the mean time our son gets more and more determined, I love it but at the same time I find myself having to make quick decisions made in the blink of an eye and also am constantly having to make sure I stay at least five steps ahead of his game, I am sure this is something any parent can identify with. However what does one do when ones 10 month old has a stronger grip than you and there is a battle of who gets to hold the spoon to feed child?

Day one of Christopher's new found grip ability we had plastic spoons all over our dining room, I tried to grab the spoon back and couldn't get him to release it so I went to the cutlery drawer and got another, he saw a new spoon and dropped old one on floor and then grabbed the new one and so the process went on. My assistant "Canine Partner" dog was on over time work, picking spoons up left right and centre,bringing them to me with a huge wag at each spoon presented,meanwhile Christopher tried to grab her tail at the same time. Thank goodness for a dishwasher or I would have had an awful lot of washing up to do at the end of meal time.

So husband and I went to that trusty mental drawing board in our head. His first thought was that we need to be tougher, giving him a spoon to play with whilst using our own one to shovel food into child very quickly. However we ended up with about 16 spoons on the floor and a very busy dog. So back to re thinking, a hole is going to be drilled into the top of one plastic spoon and then string thread through the hole. The string would be long enough to be tied to the side to the high chair but also enough for our son to be able to play with spoon, bring it to his mouth etc. Meanwhile we use our own spoon to get food down him.

Dad is over tomorrow so he can get drilling a spoon and we'll try this hole in spoon system out and let you know if it is a solution. In the meantime, I gave our little cherub some finger food toast,this was fantastic, kept him very busy and very happy, he loves being able to manage things himself and I so understand how he feels.

Something I find very difficult and heart wrenching,is not to give him too much help with getting things in his close vicinity. As a child who has struggled all my life to do things independently and not seem "different" I feel for any child when they are trying to reach something or do something and can't quite manage to. I have felt that a lot of my life but I have had to learn how I might do something differently as my family have always encouraged me to try to do something on my own. I often find myself helping Christopher get something that he is trying desperately to get that isn't far from his reach. My husband tells me off as he rightly says that our son won't learn how to move, reach etc if I keep passing what he wants to him. I don't know how to switch this feeling I have off, I wish I could, I just have been that child for too many years of my life that has tried to get things, if I dropped things on the floor I had to learn to pick things up with my feet, or use a coat hanger, that was until Yasmin, my assistant dog came along. Wish I had Yasmin when I was a child but equally maybe I would have a house bulging with NHS aids every where and be a very different person to who I am today.

I'm hoping Yasmin doesn't get too helpful for Christopher, I fear she may, she already picks up toys and wonders if she should give them to me or him!

Cracking up here!

I could sum our whole week up in two words, hectic and painful!

What a miserable way to start a blog, especially as I have been naughty and not blogged every day. The reality of the situation is that I don't have time. I know every parent will understand that.

Ok so here is a situation and explanation of lack of time, I am trying to open up a can of rice pudding for my son. That takes me five mins to be able to bend to the cupboard where the can is located, pick the thing up, drop it twice, assistant dog has to pick it up and on the second drop thinks I am mucking about! Then I go to the electric can opener (usually a fantastic invention) only to find my can opener has decided to shred cans rather than open them.I shout at can opener, my son meanwhile is moaning loudly that he is starvin Marvin and all the time the can opener keeps on shredding! Still after another five mins I manage to get it to do its proper job and put rice pudding into a bowl which is also stored at a low level that takes another two mins to bend down to. Finally it goes into the Microwave for a lovely speedy 30 seconds and after 10 mins I have something to feed the baby with! Poor little guy, he is learning patience though! I am learning to say BERTY instead of boll£"ks so I guess it is a win win situation. Except the can opener has lost its battle because I am throwing it out and getting a new one tomorrow. If it can't do its job it is sacked,lots of can openers wanting employment out there!

My "Canine Partner" dog however is munching her way through many a log bone as she is on call all day, picking up toys that my little boy throws on the floor, tackling heavy tins on the floor, cleaning up our wood floor in our dining room after my son has eaten which saves a world of hassle with mobs and floor cleaner. Don't worry, when he is crawling the floor will get a big steam session on it!

Which brings me onto my next cunning plan in independent parenting. A X5 Mop. These look good, haven't dared buy one yet, my father ,sat with his big pension keeps asking me to get one so he can see if it is worthy of buying! No father you get one, no daughter you get one conversations can while away a happy 20 mins. So it looks like it is up to us to purchase one. We have an adapted bathroom, my brother designed it for me and did a fantastic job. He then got the DFG to install it and inspected their work and insisted on them re-doing something if it wasn't up to scratch,its funny to watch your brother all grown up as a Chartered Surveyor, its strange to think of the boy who I played lego with for hours is now designing and telling people off when they don't get it right! Mind you he was always very precious about his Technic lego, I was always told off for using it so he had practice! So now our bathroom has a huge glass pane dividing our walk in shower area to our bath and toilet giving a huge floor space and a feeling of light and airiness. But most of all I can just toddle into the shower either by walking or by chair, no step to take 15 mins to try and do. Boy do my husband and I need to shower at the end of every day and wash our pain away a bit. However both my husband and I take immune system erasing medication and so we have to have a spotless home! Any bug or infection lands us in hospital and so I can no longer scrub a shower floor as I can not stand for long at all now my ankle has collapsed so bring on Mr X5 mop!

Well apart from that it has been mortgage sorting, bill paying, flash card reading, cuddles, singing, playing with every toy,blooming "Mr Maker", "Small Potatoes", "Driver Dan Story time" on cebeebies, bring on Father Christmas please! Am bored of playing with the same toys and I want to throw the television out of the window!

TU at Sainsbury's have a sale so I have been stocking up on easy zip sleepsuits, fantastic items of clothing for disabled parents! Watch out for Tescos clubcard exchange though as they have zip sleepsuits too so please stock up. Before I had my son I thought I was going to have lots of smart cord trousers and nice jumpers for day wear and sleepsuits would not be worn in the day at all. Now I have the reality of being a parent I can see if you are not going any where smart then keeping clothes as hassle free and pain free for yourself as a parent whilst keeping your little one warm is the best solution. Been to the Library,fantastic, I look forward to getting Christopher new books to read. We live in the city so we have watched fantastic firework displays for free and in the warm! We got some token indoor sparklers to light for our son to see. He was overwhelmed, NOT!

It sounds all hum drum really but it is the reality of having a little one. Equally I miss him so much when he goes to bed, being a parent is such a rollercoaster of emotions!

Hope you had a lovely bonfire night or if you are from else where on the planet I hope you had a lovely weekend x

These boots are made for walking.

Oh if only this was Christopher's motto.

We really need to encourage our son to get weight bearing, walking would be preferential. However I know many parents say "don't wish your sons babyhood away". I do get that but at the same time my knees need re replacing, as does my left ankle and as does both my shoulders through carrying him both in pregnancy and now. I am worried that my husbands knees and hips are also going and I fear for my son having to spend a lot of the first three years of his life visiting one or the other of his parents in hospital.

So I mulled it all over and decided I can't keep putting surgery off, I have to go and get some of these joints taken out and fantastic plastic put in and perhaps it is better to do that whilst he will have no memory of it,rather than it upset him more when his memory is working and he has to deal with one of us leaving for a bit.

I do really need Christopher to start taking some steps soon though. So hence the boot camp of exercise in this household.

In the morning it is door frame bouncer time for 20 mins, he is actually moving well in it now and enjoys it where as when he was 6 months he kind of hung there like a miserable puppet.

In the afternoon it is baby walker time, we have a great walker from Babies R Us, really recommend it, the seat allows your child to almost be in a standing position. The toys attached to the tray are bright and fun too. Here is a picture of him in the walker with my assistant dog, excuse the expressions on both him and the dog, clearly story time is requiring a little more oooomph.

Babylo Bizzy Bee walker from Babies R Us for £29.99

In the evening, before bed time it is floor time and I guess you will have seen my "I got on that thing called floor" blog so you will know all the fun and games of that.

I have no more ideas for how to get our son to weight bear. I don't want to wish away his baby years. Of course I don't, he will be my only child because pregnancy and carrying him now has taken a huge toll on my joints and arthritis as a whole. I wouldn't change it for the world and there are many arthritic women out there who would make a choice to have more than one child. Not only has it taken a toll on my arthritis but it has also been hard on my husbands joints, he, having had arthritis later in life, is more mobile than me, he has normal developed limbs and less deformation than I so he has to do a fair amount of the physical work. I can't see him suffering and neither can Christopher or I afford for him to end up very ill in hospital for weeks. My poor Canine Partner assistant dog would be working over time if he had to go away for a bit and I don't think the old girl would be amused!

Next will be potty training, I have to ask how do disabled parents deal with this!!!???? We went to IKEA and brought a cheap £1.99 pot, Christopher chose a lime green one, a fine choice, glad to see he has his fathers artistic eye. We got this pot because it was so cheap and if we can't find a way to get him on it then we can afford to bin it. I am looking into potty seats, they are a little higher of the ground. Again it will be up to poor Mark to deal with this as I just can not bend my knees or hips to get our son onto it.

Potty we brought from IKEA for £1.99 although pot looks high it isn't.

Another alternative idea that he could go straight onto the toilet,which requires no bending to put him on but children are frightened of the toilet monster coming so I expect he won't take to it. £16.99 from mothercare.com

Pot that sits higher off floor from Mothercare.com £16.99 does actually sit further off ground than normal pots.

I hope that Christopher will help out a bit and get himself onto it once he has been shown how. That would be the best solution really. 

Really there should be a degree in parenthood, honestly they have more daft degrees out there so I don't see why not! You have to think quickly, dynamically and apply it all in the space of very little time. 

Whilst sat waiting to see a man about an ankle, I read through some hospital pamphlets and there was one on "pregnancy and arthritis", there were a few helpful thoughts for during pregnancy but as soon as it got to the childcare bit it kind of gave up and said many arthritics have babies and they seem to manage. I am not kidding you, that was what it said, no how they manage, no tips except for "get family and friends to help". I bet MS and pregnancy, blindness and baby rearing etc etc are all similar. I can really see I need to get setting up the web site for AbleParenting!

Oh happy Halloween every one for tomorrow, Chris is sporting his Monster dungarees today in preparation for the Trick or Treaters coming over. x

The story of the Little Red Hen.

Little Red Hen Ladybird book from worldwideshoppingmall

                                                                   

Is every one sitting comfortably, then I shall begin. Stick with me on this:

The little red hen is a story about a hen who finds a grain of wheat. She asks the other farmyard animals if they will volunteer to help her plant the grain. No animal steps forward to help her.

Then she keeps persevering with the other animals and asks them to help her water her wheat, harvest her wheat, no one helps and finally make the wheat into flour for bread and of course none of the other animals help.

Finally she makes a loaf of bread and asks the other animals who will help her eat it and  every one volunteers. However she tells them that as no one bothered to help her make the bread then they weren't going to get any and instead she turns to her chicks and gives it all to them.

My husband and I were talking about this story in the context of today's society. However today the story would need to be told from the animals point of view, little red hen would like help planting her wheat, cheeky git! Good luck Mr Cameron on your Big Society idea!

An old lady fell in the street ,yesterday, in Gloucester. She went flat onto her face,she was frightened and shaken and couldn't move. My husband waddled over to her as fast as creakiness would let him. Mean while healthy people, all nine of them, stood there,circling her,staring at her struggling. It was like watching animals,in fact my assistant dog wanted to help! It was a horrid scene. My husband, whose shoulders make him scream out in pain at 2am,tried to help her but couldn't manage,all the time others looked on at them both as freaks. Eventually another old gentleman came over and helped my husband get her up on her feet again. The crowd continued to stare,my husband called them all ignorant and left. Why was it the only people who would help her was a disabled man and an elderly man? Sure the dull Psychologist in me would waive the bystander apathy card, is that really an excuse though? Animals don't even act like that.

My main reason for this blog is to outreach to other disabled people. I am currently helping a uni student with his project to create stylish aids for the kitchen,I am doing this purely because volunteering to help him will not only keep his enthusiasm in the future to help design funky aids for my future use but also to help other young disabled people so they don't have to have ugly NHS rubbish cluttering up their home and making them look very "special needs". The chap went onto an arthritis forum to ask for help from arthritic people and only I responded. He e-mailed me,shocked at the lack of willingness of others to come forward and help suggest ideas or discuss difficulties within the kitchen. I really feel for him, it is so important that our youth are interested in design of aids to help us creaky people, we all know how embarrassing those NHS aids are and yet here is someone who has realised aids are awful and is wanting to improve the look and function of them. We can't sit back and do nothing, maybe people are embarrassed of discussing difficulties, I understand that but if it is for a greater good to help others and oneself in the future it is probably worth the awkwardness of admitting some tasks are difficult and that you hate your NHS black foam cutlery from your OT.

NHS style cutlery for those with poor dexterity.

Or these that work for those with poor grip and look nice! from Alessi

                                                                     
I write this blog to make change for disabled parents,parents to be and teenagers with disability, I write to say it is ok to be different, it isn't cool, special,it is just normal. You can manage without a house full of nasty aids, you can make subtle changes in life,look at high street equipment to care for yourself and a baby rather than spending thousands on something clinical that doesn't really meet your needs.I have a shoe horn that I use to shave my legs with,its hopeless as a shoe horn as I can't flex my hands or feet to use it,nice try though OT and at least it is useful. I stick shaving cream on the end of the shoe horn, rub shoe horn with cream down my leg, wash cream off the horn and then use it again to scrape the cream off! Hey presto, smooth legs,no "special" four foot aid or carer to do it, a long shoe horn I can hide from my friends in a drawer, can't do that with most aids or a carer!

Extra long shoe horn is good for shaving legs if you have fixed, bent arms from amazon.co.uk

  I ask any one reading this to get involved with these uni students projects, be you well or disabled, it will be these guys that ultimately make things better for us all in the future. One of them may design easy to use and groovy looking baby equipment so no disabled parent need feel isolated because they can manage a car seat or a buggy.Maybe one of us might give it a go at being a "dragon", we would want to think others were behind us. If any of you are that way inclined count me in to help you. x

This chaps e-mail if you can help is:

chris chapman clchapman2008@hotmail.co.uk

If you're happy and you know it clap your hands!

My son started doing this at the weekend after months of singing the song to him and demonstrating how to clap your hands as in my version, I can't turn my palms to clap normally so I clap the front of my hand with the other. Guess what, so does he! After observing other babies, I realise they know how to clap the "right" way and he claps the bonkers ways of his parents, bless him! Still he will learn the "normal way" which is far more sensible but not quite as funny.

So why have I not blogged for ages? Well because my husband and I are so exhausted we have been lining up for the sink to be sick in due to taking a lot of painkillers and other medication to get us through a busy time. I absolutely adore my friends, they keep us going but they also have no idea of how tired we get. The fact we have been up since 5am and with joints that are mostly broken,fractured, deformed and all needing urgent surgery, trying to smile for friends, make cups of tea, wash dishes and sort our child needs, driving every one every where, playing games with them and with our son etc etc. It does not register that perhaps this is exhausting stuff. I should think every parent feels exhaustion when juggling the art of entertaining friends who have no understanding of child rearing and who are expecting you to still be footloose and fancy free and all things to every one as well as being a parent. However we also have huge amounts of pain and mobility limitations to contend with, what takes one parent ,one minuet to do, such as changing their baby,takes us 10 mins,leaving us in pain and our poor son fed up from being mucked about with for so long. Every activity that is just a bit of time from a well parents day is hours from ours and a lot more taking of morphine and steroids to kill the exhaustion and pain for a little longer.

 I drove friends to Bristol and back again on Saturday to see a fab show "We will rock you". My husband drove on Monday to Bristol and back again because friends wanted us to all hang out and shop together, which was lovely and then on Tuesday I drove us to Bristol for my hospital appointment, then to IKEA in Bristol and then my husband drove us all back. Our son was perfect throughout it all, he never gets upset when we are out.When we went shopping on Monday he loved looking at every thing and even IKEA and Southmead Hospital held its individual fascinations for him.

I need my ankle replacing, they need to find a company prepared to design an ankle joint small enough for me, apparently joints come in standard sizes and they don't go as small as my paediatric size. However someone made me a perfect ankle for my right side and so I don't see why they can't just do the same for the left. So I am on the waiting list. I am dreading it not for myself, surgery is my culture, I have never known a life without it every year so it is no different to someone feeling annoyed they have a paper cut. I feel for my husband and my son. I hate being useless, I can not seriously sit in a plaster cast on my foot watching my ill husband care for my son alone so I shall be finding out a whole new set of "how to with baby" instructions to put on here. I shall not sit back and let him do it all, otherwise we will be having to sync diaries for each others required surgery and more concerning our son will end up spending too much time around hospitals, something I want my son to stay very firmly away from having had my childhood around the darn places.

I have previous knowledge of ankle replacements from the right ankle having been done, I can not use crutches during non weight bearing weeks as my shoulders and elbows will end up needing to be replaced if I put weight through them. So I am going to place a wheelchair upstairs and one downstairs so I can scoot around both parts of the house using my good leg to move me about.No reason why my son can't sit on my lap still and I am sure both he and I will adapt.

I know primarily I wanted this blog to help other disabled parents where a huge gap exists. However equally, unless disabled parents talk of the realities and make it normal to all then the gap will continue. Life is not awful, in fact life is very happy most of the time.Both the husband and I are in pain and we need day time naps like old biddies do, we stick our "Pain Pods" on, stick pain killers in our mouths,inject our Anti TNF medication and get on with our days, no more than brushing teeth is to every one, its a job that has to be sorted and not really talked about.

 I do get exhausted trying to come across as normal to every one outside of my family unit.However, equally, I love the fact my friends don't think of me as "poor sick Carrie". I like the fact they feel they can say "oh you boring old person for going to bed at 11pm". That is normal. I love the fact my son claps his hands the wrong way with a huge smile,feeling so proud he is clapping his hands and not giving a darn that he isn't doing it the "right" way or the same way as every one else.

So lets all take a leaf from the book of baby Christopher and clap our hands my weird way, feels good doing something different doesn't it :oD

x

Speedy blog today.

My best blogs seem to be the ones done on the run, or the slow walk in my case!

Well the round up of our weekend has been a good one.

I was persuaded by my sister and my brother in laws sister to purchase a snowman zip suit from Saninsbury's for our son to wear on Christmas day, I'm not sure I would feel full of good will to all if I was made to dress as a snowman at Christmas but heck, it has to be done. No poppers to be seen on this suit so if you want to humiliate your baby like I am and have creaky hands then get this. I have checked all retail shops for accessible outfits and the Supermarkets yet again win the award! Also in Sainsburys, there is a spider outfit for little ones that has no poppers!

Secondly we went to see "We Will Rock You" at Bristol Hippodrome yesterday. It was excellent and also as a day out to the panto with children this theater is excellent at sorting out accessible seats for both those in wheelchairs and those who can transfer to seats but can't do stairs like me. Can't fault them and what is more, you get half price stall seats and you can take a carer/friend and get their ticket half price as well, or at least a huge discount. We Will Rock You was fantastic but our son stayed home with Grandma as it really was rather loud and probably scary for a nearly 10 month old!

Grandma no doubt had memories flood back of her four children yesterday! Christopher does not sleep during the day AT ALL! He is up, he likes attention, he will entertain himself for ooooo no more than 10 mins and then he moans until you read or cuddle him. Poor Grandma looked a bit exhausted when we got home. Mum has always been great, always there for me but in a way that has encouraged me to keep going,the children in my hospital ward were brought in toys, my parents brought in "Letts revise" guides! However when it comes to parenting I am absolutely exhausted and I sometimes wonder if life would be so much less painful and exhausting if we sat in wheelchairs and got carers in......NO! No can't do that, won't do that. I have a serious aversion to wheelchairs in the home, they are like big black spiders, I want them out ASAP! I know I have to use one out and about and my OTs would often feel I should use one every where but as my specialist said when I was a child or shouted at parents who allowed their arthritic children to use wheelchairs,"USE IT OR LOOSE IT".

My friend with Juvenile Psoriatic arthritis, who is a UN interpreter and now living in New York, is known as an "insanely happy fog horn" by my sister. We always try to be the best we can be,we don't really talk about our illness publicly, in fact I only do so via this blog, she does it through a therapist because she was finding it difficult to constantly keep the stiff upper lip we had been trained with throughout our childhood, in fact it was my friend visiting me and telling me about how she realized we bottled it all up and kept it all quiet that made me think, actually she had a point, maybe sometimes we needed to talk about the "arthritis" word. Sure we are in pain and sure we have regular tools taken to our joints to fix them but we never stop using them for the fear of god we had installed in us by this scary consultant we both saw and equally we both know how right she was to screech at those who sat around, I guess really both my friend and I have an awful lot to thank this doctor and our parents for.

Today my uni friends are still over, we will just relax and stay in as we have to travel back to Bristol next week to see a man about a new ankle joint.

Am sat here cramming a grain bar down me, it's 11am! Every parent knows how it is!

x

New thing to do with a nine month old!

I found something new to do with our son today! We have loads of books which we read to him at least three times a day, "Penguin" by Polly Dunbar  being his absolute fave!

From all sorts of good book shops,but  lovereading4kids.co.uk  is a fab website for children's books.

We do flash cards, we sing songs, we put him in a walker and although he doesn't walk, he at least is in an upright position and his feet can touch the floor and all it needs is the thought being there. We also sit him on the bed which acts as our floor for the main part and we spread toys around him. We try to put him on the floor at least for an hour a day because in the 20 mins it takes us to manage to get him on the floor, he may as well stay put for an hour.

Fantastic calm,kindly "Cbeebies" tv programme on at 6pm and on BBC2 10.50am.

We really don't like tv but I think we cut ourselves up about using it at points during the day. Our son has Waybaloo on BBC 2 followed by In the Night Garden around lunch time, then it goes off. Then we do more reading, singing, bed/floor time. However it gets dull, I'm going to be a bit honest and say that often parenthood seems dull when at baby stage of development. It is rewarding, the smiles, the chuckles, even the noisy farts and the look of complete content when he does it, all make my day and seeing him first thing in the morning makes my heart feel like it did as a child on Christmas day,every day.

Why is it dull? Well because it appears that it is your role as a parent to be a toy demonstrator which sounds fun but day in and day out, it gets a bit slow.This particular job description as a parent involves you showing off your brick building skills before the bulldozer (aka baby),comes along, you spin spinning tops, you try to play with the Xylophone before your child sticks it in his mouth etc.They watch you, try to copy, then get bored and grab something else, shove it in their mouths and its back to you to do more demonstrations.

Today I found baby massage. I gave him his mid week wash by putting him on his changing matt and giving him a bed bath. Afterwards I dried him and got him off his matt, onto our bed and on top of a towel. I dug out baby oil which lurks in the back of his drawer as we hardly ever use slippy lotions as for two people with very poor grip this stuff is hazardous, please use very little if you have similar difficulties. I put a drop of oil on my hands and gently moved my hand over his little feet, my hands are stuck in fist shapes and my fingers have grown weirdly and lean to the side in a walking stick shape so I can't actually do normal massage.However I gently used my back of hand to move the oil over his feet and legs which worked for him. Then he rolled onto his front so I took the opportunity to pop some oil on his back and rubbed it in, he nearly fell asleep.

If I can do baby massage then I should think any one can give it a try. Its about finding your own way, you don't push like you would massaging an adult, babies just need a gentle rub, its supposed to be nice for baby and bonding for you.

Anyway he loved it,I loved it, to all bored parents maybe give it a whirl. It kills a good half an hour so really it is a win win situation, moving the day on and entertaining! Chris has a glow in the dark star show that is projected from a turtles back, not only does it project stars on the ceiling but it also has a relaxing sound track of flute playing or sea and orchestral music so I put that on during the massage, you could almost have mistaken a sixties house in Gloucester for Bath Thermal Spa!

CloudB Twilight Turtle from Amazon uk

Happy days people. Keep positive, keep having the "I can" attitude guys but take care of yourselves too x