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
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
Well he is still now eating and now 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.
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.
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 meAll Posts 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.
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.
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.