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Big Brother

19 Feb

It has come to my attention that it is not unusual in my house that we all pull together. This is incredibly noticeable with my elder son Meical, aged 8. Since Jac was diagnosed with his Diabetes 21 months ago (I can’t quite believe we are nearly at the 2 year mark…..what a lot we have learnt in that time!) Meical has been amazing right from the word go. He very quickly learnt how to check Jac’s blood glucose, under supervision of course, and would also be a third pair of eyes in watching Jac to look out for hypo signs. He has cleverly learnt how to count carbohydrates (it is necessary to count all carbs to  be able to dose insulin for food) He also has had to put up with various different behaviors from Jac, as when his blood is high or low he can get a little ‘temperamental’ shall we say!

It is very apparent how much we rely on him sometimes as often when we are driving in the car a mournful little voice will pop up from the back and say “Mum, I don’t feel well” This is our cue to test him there and then as it could be an indicator that Jac’s glucose may be high or low and he could need glucose or insulin immediately. Not such an easy feat to do the test and administer what you need when you are doing 70 mph on the motorway with no service station in sight! So then we pass over the medicine bag to Amazing Big Brother who tests, tells us the number and either sorts the jelly babies out or gives the correction insulin dose via Jac’s clever insulin pump. What a star! I often tell him how brilliant he is and I hope he knows it!

Enjoying the recent snow

My attention was also drawn this week as to how much Jac must be always conscious about his Diabetes. Last night when I went in to do one of his night glucose tests his blood was very high, so his glucose machine did it’s warning alarm to alert to the high reading. Jac stirred a little in his sleep, and murmured sleepily “Am I high or low Mummy?”

I replied ” You’re a bit high”

He responded  “Would you sort out the insulin Mum? I’m tired.”

“Of course I will darling, you go to sleep”

“Thank you Mummy, love you”

All this and he is still only 4 years old.

My gorgeous boys…..

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Happy and Sad Times

1 Oct

Well, I beat the Education Board! I will be honest, they stood little chance against me since I am well aware of how awkward I am, and they were blissfully unaware! Although I have to admit that even I had my doubts when faced with knock back after knock back. That saying, I think they just got fed up with my phoning their offices 3 times a day, and not just annoying one person but quite a few!. I learnt that the more people I spoke to, the more names they threw at me, so I would get their phone numbers also and phone them as well. I can only imagine their office. In my mind it’s an open plan design and when they answer the phone and I tell them who I am they would roll their eyes and pass me over to the next unsuspecting person. Literally 3 times a day for weeks on end to get extra support for my child who has a long-term chronic illness. What a joke. In the end though I did get to speak to people who were totally supportive and understanding of Jac’s needs. Funnily enough by the time it got to go to the panel meeting I think they were that sick of hearing my name that Jac’s case got approved easily,  Yay and high-five to myself! Jac got approved for 2 hours support every day while he is at pre- school.  A proud moment for my self- esteem as I would normally hide in a corner rather than speak out, but when it comes to my children then I guess I surprised myself! Unfortunately this seems to be a battle that I will face every year until Jac is able to be in control of his own diabetes, which they seem to think will be around aged 8, but I’m not sure when it will be. Is it really fair to ask an 8-year-old to look after his diabetes and long term health? Is this a concern that he needs as a child? Surely it is up to the adults in his life to ensure he is safe and well rather than him have to act like an adult and grow up before his time.

At the same time as all the stress of this was going on, it was also a sad time in our family. My Grandpa (at the grand age of 89) suddenly got very poorly and sadly passed away. It was a shock as he had been relatively healthy up to that point, but he suffered an aneurism in his heart, got poorly, and died within 24 hours of first getting ill. For him it was the best way to go. He would have hated to get ill and have to rely on people as he was so independent. It was also a big coincidence that my mum had gone over to his house (3 hours away) for a surprise visit , but what an amazing relief that she had. She was with him from the first feeling of illness to the last. Hard for her, but what a relief that he hadn’t had to be on his own, confused and in pain. He had his eldest daughter with him and I know that he would have been comforted by this. When he had passed away my mum (who is qualified as a Licensed Reader) was able to be with him immediately after dying and hold a little service and prayers. This would have meant the world to him and I am so grateful that this was done for him. Grandpa’s funeral was also taken by my mother at his request and was incredibly emotional. His wishes were for a particular hymn to be sung, and at this exact time in the service when the organ started playing, the heavens opened and the rain absolutely pelted down. Probably coincidence…..but you can’t help but think it was him saying goodbye. He was such a charismatic man and will be sorely missed. I can’t even begin to picture the following Christmas without him there, we will certainly be thinking of him and missing him always. It was lovely to see all the family at the funeral as we never get to meet together, but it was strange without Grandpa with us. We certainly gave him a good send off and I think there were a few hangovers the next day, mine included!

And so we continue, always remembering what we have lost.

I count my blessings every day for my gorgeous family, wonderful friends, and our happy lives. May it be long and joyful!

Support and the Education Board (It’s a shame they are not related!)

5 Aug

Well, so much for my uneventful couple of weeks! So far Jac has had random high numbers with blood in his cannula a few times, he has had massive mood changes due to the high bloods, with tearfulness and rages, mixed in with a desperate need for cuddles with me his mum. His big brother Meical has also been diagnosed with shingles near and in his eyes and has 5 different medications for this. Now we have to watch for all the complications for Meical that could come from shingles, and be aware in case Jac gets chicken pox from Meical’s shingles. It never seems to be easy! Just when you think you have things on an even level something always happens to throw a spanner in the works.

He loves his t-shirt from the Diabetes Uk Cymru family day in Bangor!

We have also just heard that Jac’s appeal for extra funding at school has been turned down by our local council. It would seem that they expect him at 3 years old to deal with his own diabetes, check his own glucose level and deal with possibly incredibly debilitating low blood sugar levels. I know that the school would never let this happen, and are going to do their best to learn how to care for Jac, but how on earth can someone who is uneducated in Type 1 Diabetes possibly make the decision that Jac is unentitled to extra help? The education board that made this decision must be crazy! I would love to meet them in person and give them a lecture of how our lives are now structured. My family life is amazing and I love my boys so much, but if people realised that everything we do is based around Jac’s health needs they might realise that it is not easy, and every minute of every day is a challenge. We have to judge Jac’s glucose levels, if he is high we give extra insulin and because of the high levels he may feel moody and irritable, if he is low we give glucose and he may feel tired,  groggy and poorly. We also need to make sure Meical is involved and has his own special time without him feeling left out. Wherever we are and whatever we do, we are always watching for signs of strange behaviour from Jac, to alert us to fluctuating blood glucose levels. But how can the council say he doesn’t need help is beyond me! I now have to mentally prepare myself to fight them to help Jac when I’m not feeling particularly boisterous at the moment.

Which brings me to another subject of support. I come from a relatively small family, and only have my mum living close by. My husband is also from a small family, and his parents both passed away when he was a teenager. So that leaves us in the position of only having my mum to care for the 2 boys when I need to go to work , or to sometimes  have a rare night off! But I would like to give thanks for my mum, because she understands how much pressure we are under, and she also knows how important it is for myself and Michael to have a night to ourselves to have a chance to catch up on some sleep! She has learnt how to carbohydrate count and to programme Jac’s pump with his insulin needs, so that for once a month (or more sometimes!) she has the boys sleep over at her house, and myself and Michael go for dinner, drink too much wine and sleeeeeeep! (albeit with the phone next to the bed for any problems that might happen,)So, I would like to say a big thank you to my mum for being there for us. We have no one else to help and appreciate the effort she makes for us.

We have a big trip down south planned for a couple of weeks time, so lets hope we manage to deal with that and everybody is healthy by then……

Support for the family from my mum

Normal Life

16 Jul

Playing just like they should be

For the first time in a year we have had an un-eventful few weeks! It is all down to the miracle insulin pump that Jac now has. He is now acting like a normal 3-year-old, with lots of tantrums, being happy and cheeky and funny and HEALTHY! His reasonably normal blood sugar levels mean that he is feeling normal 90% of the time although we do have the odd glitch with a high or low-level which could be due to a bad carbohydrate estimation on our behalf, or a funny time of day, or the wind blowing in the wrong direction! You get my drift.

This week I have been panicking about september. Now, I know that every parent worries about their child starting school, but multiply that worry by approximately a million percent and that’s where I am now! Jac will be starting pre school which is 2 hours every morning. We have met with the school and they seem quite eager to learn how to look after him, but Type 1 is not something in which they have experience so it will be a learning curve. This is fine, as I will be staying with Jac for the first week or so until they gain confidence with caring for him, and learning how to check blood glucose levels and how to watch for signs of a low-level. But my inner self is crying with fear about my baby being in someone elses care for 2 whole hours!!! Will they know that if he cries he may be low? If he is grumpy will they realise he is probably high? Or will they put it down to awkwardness and not test his glucose levels? My stomach is in knots about this next stage of letting go.

We have applied for funding for one to one care for Jac. This may not take effect in september as he is still not full-time and not the legal age for a child to be attending education. I am in the process of applying for the funding so that once he is full-time he gets the extra care he deserves. I don’t mean that the school wont take care of him, but I do mean that with a class full of children it may be hard to spot warning signs of Jac going dangerously low. It would mean at lunchtime that I wouldn’t come into school to give insulin, which I would never mind, but as he gets older he might not want his mum interrupting his school day! Also, if he gets the funding then the class get an extra pair of hands around to help out! I do think that Jac does have extra needs and until he is old enough to understand and deal with them then he deserves to be looked after and watched out for. Its funny, prior to Jac being diagnosed I would rather have hidden in a corner than spoken out about any issues I had. But since his diagnosis I am a Lioness. Strong, proud of my Sons and willing to fight for anything we need for Jac to have the education he deserves.

On another note, I hate talking about the weather, but bloody hell! I need some Vitamin D and sunshine! Enough torrential rain! Its bloody mid July! At least it’s not just Wales suffering this time, all of the UK is miserable. Come on summer, show your face…….!

 

Amazing kids!

23 Jun

Right from the start Jac’s brother Meical was amazing. When we had to stay in hospital Meical had to stay at his Nana’s house for the week but he knew how ill Jac was and he was very concerned. Once we had learnt to carbohydrate count the contents of meals and snacks  it wasn’t long before Meical also started to join in. He was able to calculate the carbs quicker than me a lot of the time! I had good maths at school (many years ago!) but these days it was all forgotten! However over the last year I have now developed a ‘Carbohydrate calculator’ in my brain. I can look at a meal/ snack and normally be very accurate on the carb content of it. Will I win an award for that? Probably not! I reckon myself and Meical deserve it though! Carbohydrate content is needed to calculate the insulin given for that particular snack/ meal so Jac can be dosed accordingly.

Meical is also very good at spotting Jac’s hypos, where he goes too low. He is able to check Jac’s glucose level and knows how to help him (he checks with us first obviously!) He has also taken a fair bit of hitting from Jac when his levels are too high and he is extremely grumpy. He has never once retaliated although it must be a pain for him. Jac does get told off and he does need to learn to control his temper, but it must be hard for him also feeling so high and irritable. They have an amazing bond together which I hope will remain that way for life.

It is now one year ago that Jac was diagnosed. What a year it’s been! It’s so hard to believe its been a year and how far we have come over that time. Jac was a very sick little boy, and now he’s a crazy kid who takes life with a good helping of positivity (along with the usual 3 years old tantrums, that boy has a big temper!)

In april of this year we attended a weekend run by Diabetes Uk. It is meant to help families deal with every aspect of diabetes. They run activities for the children, and workshops for the parents. The siblings are also included in all activities. It’s great for them to see other brothers and sisters with diabetes, and great for the children with diabetes to see others injecting and checking bloods.  I thought it was a fantastic weekend, although very emotional! It was so reassuring to meet other families and know that other people knew what you were talking about and how you were feeling. The children were looked after with mostly one to one care. Jac a little trouble settling in, but his helper was brilliant with him, even letting him play with his expensive phone to help cheer him up! Nothing seemed too much trouble for the staff and everybody seemed to enjoy doing their part. We hope to go again one day!

Our lives have changed over the last year, but for the last 2 weeks things have been looking great! Jac now has an insulin pump which is attached to him 24 hours a day with a cannula. It’s a great piece of technology which has transformed his quality of life. It has given him near perfect glucose levels for the last 2 weeks, so here’s hoping it will stay that way! More on that next time….

Have a good weekend everyone, I’m off out for a posh dinner, can’t wait!

Emma

Sadness

19 Jun

That period after Jac’s diagnosis was tough. I did the initial survival techniques and was coping brilliantly! But after that rise came a massive fall. I felt tired. And unmotivated. And ostracised from everyone. No one can possibly know what you are going through unless something major has also happened to them (which is not something I would wish for anyone). The cloud that descended on me was huge. I wanted to be able to deal with everything as I normally would, but I was incapable. It was even too much to hoover. Some might say it was depression, and I wouldn’t disagree, but I also wouldn’t say it was. I was just down and unable to cope with anything other than the health of my family.

I don’t want to bring up this part of my journey apart from to say that my true friends came forward! And for that I’m very grateful. I did admittedly become a diabetes bore, but only because that was all I could cope with at that time in my life. Sorry friends! But other parents in the same position? It was bad for a while. It’s only now nearly to the day that I feel back to normal.

Which brings me to my other point. Prior to Jac’s diagnosis I was reasonably fit. I went to the gym 5 times a week and worked part time. We also have another son aged 7 (more on his story on another blog!) and we had also had a new litter of springer spaniel puppies to add to our house. We now have 2 Springer spaniel dogs, 2 boys, my husband works full time and I work part time. Unfortunately, with a small family, my gym has hit the dust. I no longer have a gym bunny body, and have a little more wobbly bits than I would like! I’ve recently started training on my new bike in the hopes that I would tone up again, I’ve done 40 miles in the last 3 days so fingers crossed my flabby bits will bu**er off soon!

On my next post I hope to touch on the support from Diabetes Uk  family events and what happened after my dark time….

Release From Hospital!

18 Jun

After being inmates, whoops I mean inpatients, for a week it was decided that we were ready to face the world with all that diabetes would throw at us. We left armed with insulin, insulin pens, spare insulin, spare insulin pens, blood meter, spare blood meter, finger pricking devices, spare finger pricker device, you get the picture! Basically half of the pharmacy. I felt very scared and nervous leaving hospital, as we were going from a nice little protected bubble surrounded by doctors and nurses to the big wide world! I had all this medical equipment, had injected Jac 2 times and had now graduated to his stand in pancreas with the mammoth job of keeping him alive by injecting him with insulin. I felt a little inadequate to say the least. Overwhelmed probably is a good description.

As we drove out of the hospital car park, with a carton of orange juice on the seat next to me (in case of a hypo on the way home) and Jacs diabetic specialist nurses mobile number ready on speed dial, Jac piped up from the back seat “Mummy! We are going home! I’m all better now and no more leg medicine (his term for the injections)” My heart broke for at least the second time that crazy week.

I’ve brushed over the injection part of Jacs diabetes. But, believe me, it certainly was not nice. On the one hand I was so grateful for this miracle drug, which a few decades ago would not have even existed. On the other hand it is not easy to explain to a 2-year-old that we are giving him injections to keep him alive. He screamed, he ran away from me, he would sob in the corner shouting “No Mummy, no!” I would have to just steel myself, be very matter of fact and do it quickly and give him lots of cuddles after as well as a funky sticker chart where he got to pick a sticker after each injection. Funnily enough the blood checking did not bother him so much. For anyone who is not sure, to check glucose levels you have to prick the finger with a lancet to get a drop of blood which then goes onto a clever little machine which then gives a blood level. Generally Jacs levels would range from 2-25mmols, a non diabetic person is between 4-8mmols. His tiny little fingers with baby soft skin soon became very hard on the edges from all the lancet pricking.

So, our first day home involved pricking his finger every hour or so, and injecting him after he ate. If he was high, I was clueless as I had not yet figured out how to adjust insulin to carbohydrate (it was my first day home I had a lot to learn!) and if he was low I knew I had to give fast acting glucose. Also started the alarm settings for the night. Every 2 hours. I was so very tired, but also so happy that we had these tools to help Jac survive. Yes, it was a heck of a shock going through his diagnosis, but, we were lucky enough to live in 2011 when all these medicines could help him survive. I also knew we were very lucky to still have him. I was very determined that over the time I would do everything I could to keep positive and not let this change who he was. I also set on a massive learning curve and became a little addicted to finding out everything I could about type 1 diabetes…….

Till next time!

Emma