Update 23.05.14

Its been a busy week so I haven't had the time to update this blog

Monday morning I took to my son for his chest X-ray he was really good and did just what he was asked by the lady, she asked him his name and his age and he didn't even look at her and I had to answer, this didn't surprise me as he has never answered either of these questions for anyone, he just doesn't talk when out and very rarely talks at home.

Tuesday was his birthday, unlike other kids he doesn't get excited about things like birthdays, he did say 'oooh' when he saw his presents and enjoyed opening them, he hasn't actually played with any of the toys that we got him since, he has looked at them but not really played with any of them. I had made him 2 cakes a small square one to take into pre-school and share with his classmates and a dinosaur one for at home. He did sit and blow out his candles but didn't eat any of the cake, I threw some of it away tonight as it was just sitting on the side.

Wednesday I got a letter from the comm peadiatrician saying that they are going to discuss my sons case at their team meeting/panel and make a decision on whether or not they will see him, I will then get another letter letting me know the outcome, if the outcome is no they won't see him for any reason then I will be going back to the GP to get him re-referred until they agree to see him.

He also had his first full day at pre-school on Wednesday, he loved it but was really tired when he got home, they said that he had done really well and he ate some but not all of his pack up which is what I expected.

Thursday was a pretty normal day, hubby was off work and son was at preschool

Update 16.05.2014

Current weight 28lb which is an increase of 0.4lb, this means that it is going in the right direction, he still isn't really eating and is refusing to eat much variety of food, he is eating mainly cereal and only drinking milk refusing any other liquids but it is a big improvement on what he was eating.

I got home from work today and got the bike out, the sun was shining so I oiled the chain/gears and put some air in the tyres and dug out the helmets, and after tea we went out for a bike ride, my daughter sulked and grumped about it and refused to bike up the hill near my mothers house, but then I guess that it what 14 year olds do.

Down hill all the way home though so she was happy then

Got home and put the lad to bed no bother, he went to sleep straight away and then I went to do the food shopping, I have started doing this on a night when the lad is in bed it just  makes it so much easier as he hates shopping so much.

Good things about today
1. he ate something
2. he put on some weight
3. he went to bed without a problem
4. I got the shopping done
5. I got the bikes out
6. The sun was shining
7. I got a letter from the local CCG saying that he will be discussed at the next children's panel to see if he needs allocating to a Peadiatrician.

No appointment yet but a letter is a start, at least I know that he is on the list and that I will hear something soon.

Plans for tomorrow

Play centre with friends and their kids
A little bit of gardening in the afternoon

Update 14.05.14

Well he is still now eating and not weighs only 27lb

He has an X Ray on Monday to look at his chest and see if there is anything other than the normal causes for his constant coughing and yes he is still coughing.

I have spent the last couple of days trying to chase up his referral to the community paediatrician it has not been fun, I rang the number the GP gave me and they put me through to 2 or three different people until someone gave me another number, I spoke to 3 different people on that number before someone took a message and said they would get back to me, this was on Tuesday and guess what nobody has.

On Monday they put me through to the wrong department and I just gave up.

After Tuesdays phone call I rang the GP and asked if they could also chase it up for me, they said that they would, I haven't heard anything yet so I will be ringing them back tomorrow after work to find out what is happening.

Tuesday night after they didn't get back to me, I was an emotional wreck, it just seems like my son who is the world to me is just a name on a piece of paper to these 'professionals' and they can't even do me the courtesy of giving me a call and letting me know what is happening, the referral was put in in March FFS its not like it was done this week.

I'm not sleeping and bursting into tears randomly, I can't concentrate at work and struggling to remember what I am doing or should be doing when or where, even the gym isn't making me feel better it normally does. I can't clear my head of anything  and I am constantly worried about him and his weight, his speech, his school in Sept everything.

Anyway enough about me, I took the lad for a walk on Monday to see his new school I had to take some forms in and I thought it would be nice for him to see his school, he seemed happy when he saw it and excited to go inside which can only be a positive thing.

Practice cake 10.05.14

Its the boys 4th birthday in a couple of weeks and I have bought a new cake mould, this is the practice cake that I did today, hopefully it will be a bit tidier on the day, but it gave me a better idea of what I am going to do.

Back to the docs 09.05.14

Well after another night of coughing fits I asked my husband to take him to the docs, but apparently he didn't have the time, the last morning appointment is at 10 and he didn't start work until 1pm so I would argue that he did have time and that he in fact has his priorities wrong.

I called the docs up from work and got a teatime appointment.

When I got there it was our usual doctor so I didn't hold out much hope of been listened to but he did listen and agreed that the cough has been going on for far to long.

He is sending him to the hospital for a chest xray and has asked me to chase up the appointment with the community paediatricians for his development check. He also wants me to take in a water sample so that he can check it for sugar because he isn't gaining weight.

All in all I think it was a worthwhile visit or at least it will be if it gets us some answers to why he always has a cough and why he doesn't eat.

Update 08.05.14

Today is my long day at work and boy did it drag today,

Anyway...  the lad was brought downstairs this morning by the hubby, but he didn't scream the house down this time, he did whine and he wasn't happy about it but he didn't quite scream which is an improvement on how he has been over the last few months.

He didn't eat his breakfast again, and only had a cheese dipper a rice crispy bar for his lunch, wouldn't eat any tea but did have a small amount of cereal. The hubby said that when he refused breakfast he gave him a millkshake which he did have, and he has had some after his lunch and again after his tea with calpol in as he still has a slight temperature and still isn't himself.

This not eating thing needs to stop soon, he doesn't normally have as much milk as we have been giving him over the last few days, normally he just has a cup with his breakfast but since he started to loose weight we have upped it to replace some of what he is missing.

The hubby has got him a box from shop, I am sure that he was a cat in a previous life he just loves sitting in boxes.

Its my favourite night at the gym tonight, body combat and spinning, means I am there until 9 but it is worth it, I always feel better for it.

Underweight 07.05.14

I weighed the boy this morning he was 29lb last week, this week he is 28.4lb any loss is not good when he is so tiny, the not eating thing is starting show and I am worried about it, today on the way home I got him some meal replacement milkshakes as he loves milkshake, I am hoping that these will help stop him loosing anymore weight and that if I can get him to eat a little bit aswell he will get back on track.

I think it is important that I weigh him weekly at the moment so that I can monitor how he is doing and if we don't have any increase in weight in the next month he is going to have to go and see the doctor, I can't have him not eating. I know that children aren't supposed to be fat but he is very thin at the minute.

I put his weight and height into the NHS calculator and it said this, this is very worrying, but he does only need to out on 3 or 4 pound to be healthy. In theory when he is well that shouldn't be to difficult.

He is coughing again, he seems to always have a cough, the Doc is sure it is not asthma, again I think I am going to start a diary and log the nights/days that he is coughing and the nights/days that he isn't, he doesn't seem ill in himself just tired so I think that there must be a reason for him always coughing. This has been going on since he was a baby and I think it is the only reason we have ever had to take him to doctors.

Good Morning 07.05.14

Poor lad was coughing all night last night, I was up with him a few times and have made the decision that he is not going to preschool this morning, he is cough cough coughing and snotty as hell

Not sure what causes it with him, he is always coughing and always snotty its getting to the point that I might have to try some piriton or something to see if it is allergies rather than illness with him.

He hasn't eaten any breakfast and has drank his milk, I'm going to work soon, luckily he can go to my Dad for the day and I finish at 2.30 so will be picking him up not to long after the hubby has dropped him off.

Have a good day everyone, I need caffeine to get through the day I think after so little sleep.

Update 06.05.14

Today I have been at work and the hubby has been off so he got the boy up, the boy on the other hand didn't want Daddy to get him up and screamed the house down when he went in to him, I am not sure why he does this but every morning is the same if I go in he is happy as anything jumps up out of bed and there isn't any problems, if Daddy goes in he screams, we decided that even though this is the case when I am at work and hubby is off he needs to get up for Daddy so we let him have his strop.

He refused to eat his breakfast and when I called at lunch time my husband said that he hadn't had any lunch either, by the time that I got home from work it was 3pm and he had had the tiniest amount of pastry from a pork pie, I put the grapes from the fridge on the coffee table and started to pick at them, not a massive amount of food but better than nothing, he totally refused to eat his tea to even though he was allowed to choose it and put it on the oven tray.

I left the grapes on the table all night and he did eat about half of them before bed and I went to the gym leaving the hubby to put him to bed, the lad is again happy to go to bed with him so long as I am not there if I am in the house he has a tantrum about it and refuses to go, this meant that I had to go to the gym slightly early to allow my husband to have an easy bedtime with the boy.

This afternoon we had to fill out a form for his next assessment with the speech and language people, it was a lot of questions about what he likes to eat and drink, what he likes to play with and how he plays, one of the questions was about social games that he likes to play and other than peek a boo which is mainly his roaring in our faces and laughing his head off about it we were both struggling to think of anything, but we had a whole list of things that he doesn't like, circle time, action songs/nursery rhymes, noise, crowds, busy shops, swimming.....

Took the lad for a walk to the post box and let him post the letter he seemed to like doing that.

Update 05.05.14

Well after not eating anything yesterday he went to bed at the normal time and didn't seem poorly or anything, he woke up in the middle of the night and was sick, I was thankful that he only woke up the once but he did cough quite a bit in the night.

When we got up this morning he seemed much brighter than yesterday but was still very warm so I gave him some calpol which worked like magic, he still didn't eat any breakfast and I still cancelled our trip to the Deep I was a little upset about having to cancel as I was looking forward to taking him but I didn't want to risk him been sick or ratty on the way round so we will have to go next weekend instead.

He ate a little more for his lunch only a cheese dipper and a yoghurt but significantly more than he had been eating, he then watched a bit of telly with his headphones on, he seems to find this a much better way to watch the telly, especially if the washer/dryer are going in the other room. He is still covering his ears quite a bit especially when he is in the kitchen and the washer is on, the dryer is on or the kettle is on, he also doesn't seem to like the hoover to much. He is also shushing us when we are talking if there are a few people in the room.

He didn't eat much tea just a tiny bit of mash and then another yoghurt, again probably not much more then 500cals for the day which is still a worry but after he was sick last night I guess that it is more to do with him not feeling 100% than anything else so I am trying not to worry to much and just keeping an eye on it as the days go by, I gave him some multi vits again.

I have some questions that I need to sit and answer with the hubby for Speech and Language before they come out and see us on the 27th, he is working late tonight so maybe I will make a few notes and see if he agrees with what I have said as I really want to get it posted back, I will be speaking to work tomorrow about taking that day off, its half term that week so it might be nice to have another day off anyway so that I can spend it with the kids, or maybe get the garden sorted it looks like Steptoes Yard at the min.

Positives from today
1. no major tantrums just one minor strop about picking up toys
2. loved his bath and went to bed really easily
3. went to shops without a fuss but had to sit in the trolley to do it
4. ate something, even if it wasn't much
5. didn't wake up at crack of dawn
6. played with his toys a little bit even if he was just lining them up across the room
7. I got the housework done

Watching the box 05.05.14

Headphones for watching the telly, he seems to struggle to watch it without them, he seems to struggle to concentrate on it, so when it is something he really wants to watch this is what he does. Today he is watching inspector gadget.

Update 04.05.14 Nil by Mouth

Or at least that is how it had felt today, the lad doesn't seem to notice when he is hungry and it is starting to get to be a real challenge to get him to eat anything at all.

Today he refused to eat his cereal that he asked for, and then when I did egg on toast for my breakfast he asked for that to so I did him some, he at 1/4 of a slice of toast, I gave him some yoghurt covered raisins to eat whilst I was in the shower and a fruit juice, he didn't have any of them.

He then fell asleep, I don't know if this is because he hasn't eaten enough to get the energy he needs to keep going or because he is tired from coughing in the night.

He woke up I gave him some lunch which he didn't even have 1 bite out of, I managed to get him to eat a small pork pie before we went to my sister in laws, whilst out she offered him chocolate cake which he wouldn't eat and a drink which he wouldn't drink.

For tea I cooked him pork in pastry and mash which is usually one of his favourites he had one spoonful of mash and refused anything else. So before bed I gave him some multi vitamins and a large cup of pink milk which he did drink.

It is such a worry when he doesn't eat, he can't have had more than 400cals all day which is nowhere near enough to sustain him, he is so thin and I worry that if he does get ill that he will struggle to fight it off.

Other things that have happened today
1. He wouldn't interact at all with his cousins who are both around his age (1 a yr younger and 1 older) at all
2. When his uncle was trying to get his attention he wouldn't even look at him or acknowledge him but it was clear that he could hear him
3. Everytime that the washer has spun or the dryer has been on he has had his hands over his ears
4. Minor tantrum over putting toys away

So much for the housework 04.05.14

Poor thing has been awake coughing all night, just climbed on me and did this.

Looks like the cleaning and washing is going to have to wait today

Update 03.05.14

Its been a really long day today.

Firstly I got a letter from Speech and Language saying that they want to come out and do another assessment on my son on the 27th of May, this will be with his normal therapist and her senior who needs to do a separate assessment before we can put him forward to the autism panel for a confirmed diagnosis. I would normally be at work on a Tuesday but I think that I will try and swap my day rather than asking them to change the appointment, I don't want to end up having to wait a few more weeks for them to come out and see us.

The lino was fitted in the kitchen this morning, my son was interesting in this he stood and watched the guy doing it for a bit without saying anything to him.

When he had finished and left I took the lad to the park for an hour, whilst I was there one of the children who did talk time with us at the children's centre was there with her lad, and her boy who is the same age as mine just seemed so much more able, he was climbing up the climbing frame, swinging on the swing and chatting away to his Mum, my lad is still going on the baby slides and in the baby swings and has no interest in playing with any of the other children at the park. It does make me sad that he doesn't play with other children, I do feel like he is missing out on something, but then I look at him and he is happy he doesn't seem to realise that he is missing out so maybe for him its not such a bad thing.

I get home just before the parents come round, my Dad had decided to come and trim up the kick plates and put my washer/dryer back on for me as hubby was at work and I needed it sorting, this was nice of him but I would have likes a little but of warning. It took a couple of hour and I was helping, in-between my Mum trying to get the boy to do stuff that he wasn't interested in. They left just as hubby got home and then we tried to do some washing. Washer wouldn't work.

I ignored this and cooked tea, I let the boy choose what he wanted for his tea, I cooked it for him and then he refused to come to the table and eat anything at all, he ended up going to bed without any food, he hasn't really eaten very much again today, which as always is a worry, but then yesterday he did so well.

After tea we sorted out the washer, moving it around must have dislodged some gunk or something as the pipes where blocked, it took us a while to sort it out but it is working now, making a noise when it spins though so looks like I will need to get a new one soon, anyone out there want to get us one?

Jobs for tomorrow - clean the house (its a tip), finish the washing and ironing, go see the sister in law and take nephew birthday pressie round, cook tea, and go to the gym.

Update 02.05.14

Well firstly the Ed Psyche didn't ring me or email me to let me know how long I will be waiting for an assessment for my son, looks like I will be chasing her up on Tuesday, I know that they are busy but she could have even asked her admin to email me I only want some sort of a rough idea.

Whilst I was at work today the floorers came and put the concrete stuff down in the kitchen to level the floor which meant that I couldn't go straight home, this meant that I went to my Mum and Dad's after work and instead of picking up my son stayed there and then went out to pub for tea with them.

I have honestly never seen my boy eat so well when out of the house, I got him a child's fish and chips and kind of expected him to play with it and not really eat but what he did was eat all of his fish, half my Dad's fish some of my mums and then all of his chips. I am really pleased with this he hasn't really been eating that well recently so to see him munching away like that was a real relief, he only weighs 29lb at the moment and could really do with putting on a pound or two.

When we got home the floor was dry enough for me to be able to make a cuppa and finally put my feet up which I did whilst he was playing in the bath, he has gone from hating baths to loving them again it took me a good 6 months to get him to accept baths and then a little while longer for him to start enjoying them but it has been worth all of the work with him to see him playing with the bubbles and his water squirters.

He then had his story and went to bed without so much as a whimper and went straight to sleep, so all in all not a bad day.

Roll on tomorrow and a new floor finally a new floor in the kitchen, maybe a tidy house and if the weather is  nice a walk to the park

Update 01.05.14

I rang the Educational Psychology dept today to find out if they had received the referral for my son and see how long it might be before he gets seen, I am so conscious of the fact that he starts school in September and it is unlikely that he will be able to cope without additional support.

They said that they got the referral through on the 29th of April, approx 3 weeks after I had been told by Pre-School that it would be done, they really did drag their feet with that one, but at least I know that it has been done now.

The Ed Psyche who is will be seeing him should be giving me a call back in the morning to let me know approximately when he will be seen.

Its good to know that things are happening in the background even if it is very slowly.

In other news we had the carpet fitted in the hall and stairs whilst I was at work, when I came home the hubby was stressed about it and had been rushing around all afternoon, after apparently doing nothing all morning while the boy was at pre-school, no matter how many times I tell him that he should get his jobs done whilst our son is out of the house he doesn't do it, choosing instead to play minecraft on the PC and then get stressed about getting stuff done with a nearly 4 year old to look after at the same time. He then proceeded to cook himself some tea while I did mine and the kids, he couldn't manage to do both and I also hoovered the stairs whilst cooking tea. He did volunteer to clean up after tea which he never does so I will let him off a little bit.

The carpet looks good, so much better than the old one, tomorrow the fitters are coming back to level off the floor in the kitchen and then on Saturday they are laying the new lino in there, I can't wait to get it all finally finished.

Taking the kids to pub for tea tomorrow night with my Mum and Dad, hope that the boy is ok with it, he doesn't tend to eat much when we eat out, even less than he does normally so I am expecting the same thing tomorrow.

That Moment When.... 01.05.14

The hubby gets the lad up instead of me.

Unlike yesterday when he woke at 5:30am the boy woke at the normal time of around 7am, as I need to leave for work at 7:30am and the hubby is off work on a Thursday I leave him for hubby to deal with.

The boy isn't so keen on this idea though and as soon he sees that it isn't me getting him up the tantrum starts, and it keeps  going until he is downstairs and sat on my knee.

This is something that up to a few months a go wouldn't bother him but now he point blank refuses to get out of bed for his Dad, we have made the decision that this can't be the case when I am at work there is not time for me to get him up when his Dad is here and has time to sort him out. So today hubby lifted him out of bed and carried him to the bathroom, he was refusing to come down so hubby left him in the bathroom having a strop.

A few minutes later he made his way down the stairs and jumped on me, he is now sat next to me so close that he is touching me as he always seems to have to be when I am here eating his cereal.