Wednesday, 21 May 2014

What a difference a day makes

I am sorry for my silence over the last week. We as a family have been through one of the toughest weeks of our lives.
On Wednesday I took OB to see our GP for an emergency appointment, we were worried about him in many ways but the real decider that something was wrong was when he awoke two nights in a row just screaming for water like his life depended on it. I took him to the GP with a heart sinking feeling that my little boy had diabetes, he has lost weight, drinking and weeing all the time, funny smelling breath. I wanted to be wrong maybe he was growing, had a bladder infection I took a sample just in case.
Seeing the doctor when he tested his wee I knew by his face we were not in a good place. He apologised he had to tell me this way but OB had type 1 diabetes, I knew it but the tears just fell and that's when the other side of my brain just took over. Where are we going to, ward name, hospital, what do we need to bring.
Calling your husband in tears to tell him your little boy is diabetic is not easy, understanding me was even harder, a mix of sobs, sniffs and a laugh to try and keep OB calm.
So the family team took off to hospital, mummy, daddy, OB and ATM. When we arrived we seemed to enter a strange whirlwind of events though sometimes the whirlwind just dropped us down and we sat there not quite believing this was real. 
So the four of us troop into the ward, where we re greeted by such a warm welcome we felt instantly safe. The nurses were amazing though they were reeling of numbers to us which mean nothing, to be honest trying to stop ATM from running away while they take OB bloods and vitals is not easy, I grew an expert at listening while a Small child bite into my arm, shoulder etc I nodded and smiled thorough gritted teeth. 
We somehow managed to send a day in the ward, I think most of the time was waiting around for local annasetic cream to work, or to see a consultant who tried to explain diabetes to us while we chased two children around a play area. Time came for OB and I to be transferred to the hospital who could take us over night, we were given a bag of items and paperwork, getting my boy strapped into the ambulance and saying goodbye to my husband and ATM was hard and I suddenly felt very alone.
We arrived at our new hospital, OB slept the whole way, I knew this was not the best start as it was 5.30pm and I felt extremely sick from the ambulance it was like being driven in a boat.
We chose our bed and OB got busy, up and down the corridor in every room, temper tantrums as every exit was sealed, seeing my husband enter the room I have never felt so relieved. It was now gone  8.30 OB was wide awake and we had still not eaten all day. Come 11pm he was still up we took it in turns to walk him up and down. Countless times we were told with his readings he should not be so active, he is defining medical experts. Finally Hubie has to leave, I virtually pin him to the bed and get him to sleep, they check him every two hours I wake every two hours, he is up at the 5.30am check. Oh my it's going to be a long day.
Today we at least manage to eat, we get a DVD player, we bring the iPad and connect it online. We start to learn how to look after our boy, checking his blood doing his injections learning his readings are as bad as they sound. He is asleep it's 9pm. I hear them check his bloods but can not open my eyes, they leave the 5.30'check phew.
Next day a new nurse, new news two diabetes nurses re sick you may not be able to go home, I collapse the thought of keeping him in the ward was too much to deal with. This seems to do the trick, people are coming to see us as they want to get us home. The day passes in a blur of meetings,am dietitian, the consultant,countless injections, visit from the diabetic nurse. Then 7pm we can leave.
We we are taking our boy home both scared we would break him, as he collapsed in his car seat we knew it was right for him no matter how scared we were.

Tuesday, 13 May 2014

Is Sand food

Part of OB issues is eating non edible items, when I say non edible items I am talking sand, mud, leaves and the most favourite item that tasty treat known to all as playdoh.
This condition is probably the most unrecognised and taken the least seriously of all of them however for us parents it's one of the scariest. We had a trip to Sheffield park and OB tried to do a walk by eat of a leaf, when your at a beautiful  NT property and your son try's to eat a leaf that you have no idea what it is or if it could possibly position him it turns from a lovely walk in the sunshine to one littered with dangers. It's not only the NT gardens that worry us it's our own garden.
We moved to the countryside and have a lovely garden, let's clarify this it was lovely when we brought the house, after three years of neglect it's a rather weed dominated borders but the grass looks good. OB will eat anything he eats mud all the time, the worst one is trying to keep an eye on him with leaves, he picks them and wants to eat it, you can not do anything other than watch and dive in when needed.
I have spoken many times with professionals about this and we have the following, we need to know if it's sensory seeking or a compulsive action. My problems with this is that as a mum I do not know the difference between the two types of behaviour which is why I seek help to clarify why he has this desire to eat none edible items. Trust me I watch him all the time, that's all I do, but I do not know the difference between the behaviours. I change my mind everyday from one to the other as I watch him and try to stop him eating mud or sand. 
So what have we tried to stop this, we have tried giving him food items next to him eg raisins to chocolate biscuits when he is playing with playdoh but believe it or not he prefers the playdoh. We have tried taking him inside the moment he eats something I tried this for two weeks I ended up shattered and achieving just going inside and out again and still him eating.
I am hoping when we see our consultant on Thursday that finally  we are taken seriously about how distressing this can be to a parent. We have been turned down for NHS OT once and told not to re apply as they are so short staffed and would not be able to see us. If not as with salt it will be down the private route. 

Sunday, 11 May 2014

Meal plan week commencing Thursday 8th May

Sorry for my late meal plan list I am not sure where the time has gone...

Thursday - Green Spaghetti - http://www.bbcgoodfood.com/recipe/secret-green-sauce-spaghetti

Friday - homemade chicken burgers - in ciabatta rolls with avocado,salad and Harissa Mayo

Saturday - cheat meal of aldi Chinese bag. Boys to have pizza and salad (it's shop brought pizza)

Sunday - roast turkey, roast pots, carrots and broccoli

Monday - Monday night pie - http://www.bbcgoodfood.com/recipes/10310/monday-pie

Tuesday - Courgette Lasagne - http://www.bbcgoodfood.com/recipes/4716/creamy-courgette-lasagne

Wednesday - omelettes and chips

Saturday, 10 May 2014

Please may I talk to......

Since I started having a feeling over two years ago that OB development was not right I have had to become that mother who is always on the phone. You know that feeling when yet again you pick up the phone to chase an appointment or some information that was meant to be sent. You reel off your child's details each time and your contact number for someone to call you back, you become expert at leaving short messages on answer phones to try and chase those answers.

Today summed up this constant stream of phone calls, we last had a catch up with our NHS SALT in March and OB has not had any SALT from the NHS since January. We were told yes he will have another six sessions but will not be until after Easter. As Always on the day I ask why we have to wait so long can he not have any sooner, I get that look of please do not go there again. So Easter has been and gone and still no appointments. Today the appointments arrive and we are only down for four sessions, yes you heard that four sessions we have had nothing since January.  This is not right, but the sessions were meant to be a pre school as they need the support, I have mentioned this twice and it's in his notes, but this has not happened. Yet again a parent has to get on the phone and find out what's going on and put it all right.

This then brings me onto our Early Years service, when OB was just two years old they were very supportive, we had meetings, targets and even extra play therapy. Fast forward two years later, post EHP plan which I will write about soon. This is where we are, a visit to pre school after comments made in the EHP meeting. They introduce a traffic light system for pre school to implement, his 121 half mentions it to me as I was trying to get two children together with lunch bags and coats out of the door. I then get a report in the post. No phone call to talk it through just a report. How as parents can we be constant with methods of helping our children communicate if we do not have a full understanding of methods being implemented at pre school,or if I have a opinion that the new idea may not work and want to talk it through. A system is being implemented that I have no idea about other than a google search, with out my thoughts on if it will help OB. As you can tell it means I will have to call and talk it all though to make sure I understand the reasons why it's being implemented, together with how we work this at home.

OB will be starting his transition to school this term, there is a meeting planned for June 16th at 9.30 apparently. I know of this but his 121 is already saying she can not attend and reeling off the reasons. This meeting is in June and the only time we as parents will be involved with all the professionals in one place, for a very important time in OB life. We have to pay our private SALT to attend as the NHS SALT  will never have met OB, I have been told I have to decide who will be lead salt in the meeting. I can not believe I have to tell them who it would be let's think about this someone who has never met him or someone who seems him every two weeks...who would we choose. 

As a parent I have learnt I have to be the co originator of my child's care and support,that I have to battle to get him what he needs and deserves, but also I must step in and voice opinions on subjects that I personally have very little knowledge on but know in my heart it's not right for my boy. I have to have the strength in my opinion to stand up against professionals and fight a little boys corner, to question why. Aother week will start with me on the phone, leaving messages and hoping all my battles are ultimately helping my little OB.

Sunday, 4 May 2014

Meal review

It's been OB birthday this week so everything has been a little hectic but a quick review of last week and a quick guide to this weeks meals....

Thursday - a BBC good food recipe courgette and bacon pasta - not a success would eat pasta when all sauce has been removed. I think it's to do with the look of the sauce too many bits in. However the rest I us loved it.

Friday - big bowl of salad I have seen one in a busy mums cook book of leaves, avocado, bacon and egg on top think I am going to do something along that line. Boys will have carbonara as salad is not that well received. Did just the simple carbonara and it was eaten all up, I put nothing extra and peas on the side. Simple seemed to work.

Saturday - fajitas for parents the boys will be having tortilla pizza. Massive success was eaten all up with smiles. 

Sunday - lasagna busy mums cookbook version with garlic bread and green salad. Another success after a wary start. All eaten up esp the pasta.

Monday - busy mums cookbook chicken and broccoli gratin. Ate the broccoli but nothing else. Did not like the look of the breadcrumbs on the top.

Tuesday - honey and mustard sausages busy mums cookbook with green veg. The potatoes were eaten all up the sausages as always were left behind untouched.

Wednesday - smoked haddock and potato bake not sure the veg but thinking runner or green beans. This was not liked at all by OB. But the rest of us loved it.

At this moment I am not getting anything that clear other than bits and fussy looking food. I shall keep watching and reporting to see if I can get any clues and to why and what he will not eat. I am determined to figure something out. 

This week it's sunday already 

Friday - tuna fishcakes

Sat - pizza and chips for OB party with the family

Sunday- chicken pie

Monday - spag Bol

Tuesday - quorn a la king

Wednesday - baked potatoes - beans and cheese