Family Life

Well ..... It's been a long time since my last blog - I stopped blogging as it all became to much to bear with Callum, I struggled, we struggled, our family struggled but, we got through it and continue to do so.  Callum had his Gastrostomy Tube in July 2014, it was a difficult decision to make as although the nasal gastric tube was horrid for Callum, it was temporary and moving to a Gastrostomy Tube seemed like a permanent solution.  That word solution though is the positive part of it all, to have a solution to something is what we look for when tackling  life's problems. I have come to realise that although it's a very different life to what we planned it's about managing it and finding the positive side to everything.  Whilst it took me a long time to come to terms with  Callum's Gastrostomy tube and get used to him having a tube coming out of his tummy it has kept him quite stable.  There have been too many hospital admissions to remember since my last blog and each one seems to be more scary and draining than the last but, we get through it and keep getting on with it.  The disruption to family life seems more noticeable now which I know is down to Ronnie getting older, he's 7 now and is at junior school. As a parent you naturally shield your children from traumatic events or upsetting situations but when those things are happening in your house and it's happening to their sibling it is impossible to do this, it leaves me feeling like I've let Ronnie down and I feel so guilty that he has seen countless paramedics rush into the house to stabilise Callum and then rush him to hospital in an ambulance with me going to, not knowing when Callum and me will be back home again.  But this is our family life, and we all have to manage it as a family. We have fantastic families who help us so much especially when Callum's in hospital, so at least Romnie has a routine which he is familiar with during these periods. Without them I know we couldn't do it.

It's been a while........

I've been meaning to write but then something else happened and it's just all snowballed from there.
Callum got chicken pox in October last year and unfortunately since then he's been quite poorly and in and out of  hospital ever since.  To cut a very long complicated story short Callum is now being fed through a tube which goes into his nose and into his tummy. Callum is unable to maintain his blood sugar and he just doesn't eat enough to maintain it now.  He's always had feeding issues but it's just got worse and worse to the point we are at now; he will only eat beans, chips and weetabix just little mouthfuls never the whole serving.  He now has 4 tube feeds a day at 7am, 12pm, 5pm and 11pm.  He has a high calorie milk which is basically a meal in itself. He has a pump to slowly pump the milk in so that he can tolerate the feed, this takes half an hour to go through.   To say we have found this difficult is an understatement.  I know it is necessary but I now feel like a nurse/parent, the amount of medical supplies needed is such a lot, we've been given a community nurse who comes out weekly to change Callum's tube and we have monthly delivery a if everything that's required: giving sets, syringes, ph paper, tape, tubes, milk, dispensers ect... Boxes and boxes of things it really does feel
Like a hospital here and it's so hard trying to find room for everything too.
The plan is to see if having regular milk feeds it may stimulate Callum's appetite but sadly that do far is not the case he is eating less each day and he is now in the waiting list for a gastrostomy which is a tube directly into his tummy.
During the month of March we spent 3 weeks in hospital it's such an unsettling time for all of us and our family, I feel like I'm abandoning Ronnie during these periods he's 6 in July so is becoming more aware of things now.  Thankfully I have an amazing family and family in law without whom we could not manage.
Throughout all of these new problems Callum remains happy and is enjoying life. Which of course is the most important thing in all of this.
I honestly feel like it's all happening to someone else, I look around the house and see all of the boxes and can't believe it's happening.  Watching Callum asleep when he has his 11pm feed reminds me of when he was a baby and I would never have imagined we would get to this.
I think added to it is when we go out or I'm out with the boys on my own peoples reactions to Callum are genuinely lovely but then there's others who stare and ask really tactless questions.  I'm getting more used to it but again it's another side to all of this.
Callum's also got to wear bifocals in his glasses now as his low muscle tone is affecting the muscles in his eyes.  I chose him a fab new pair of glasses today.

Pardon?

It's been a while since my last blog, I felt like i needed a break, I don't know why, things sometimes seem easier if you don't think about them so much don't they?
I keep thinking the same thing, this is as bad as it will ever get, nothing else can go wrong can it?
When I say wrong I mean we won't have any more things to worry about........
Why oh why do I even let those thoughts enter my mind?

I feel like my head is going to explode with it all, so I thought I would write about it.

We have had a flurry of appointments over the last few months for Callum, a couple of overnight stays in Bristol and Great Ormond Street doing various tests looking at genetic syndromes and metabolic disorders, most of them I struggle to understand as they are so complex and scientific almost.

With each test there is the hope that this one will lead us to a diagnosis, but there is also anxiety, as Callum is a bit older now he is becoming more aware of things hurting, and doesnt want to be held and poked and prodded, and I hate that he has had  to have all these invasive and distressing tests done in the first place.  But I think we may be a little nearer to getting a diagnosis.

A metabolic error has shown up a positive result and we are awaiting the results of a skin biopsy to confirm this.  Bristol rang this afternoon to ask us to come for an appointment on Thursday to discuss the results.

We were also told that it looks like he has a very rare genetic syndrome, we are awaiting X-ray results to determine this.  We are also awaiting his results from his MRI scan of his brain and lumbar puncture.  We have an appointment in December to go through all of these together with the brain wave and muscle test all of which were done at great ormond street.

We were also informed that his b12 is low which needs to be investigated further, so more blood tests were taken on Friday.

 I feel like I live at the hospital at the moment.

This is where we are up as at 11:00pm tonight.

Oh but then the other worry is my oldest son, we've had concerns regarding his hyperactive behaviour for a while, so today we took him to see the paediatrician. After going through it all with them they've said there is a possibility that he has ADHD.

You really couldn't make it up could you?

But I refuse to wallow or be negative about the challenges we are facing as a family, we are lucky to have each other and each others families supporting us.   Things can only get better and with time things will be calmer and less worrying I'm sure.  I won't pretend that it's not hard because it is hard bloody hard in fact, but we will get through it and deal with whatever the next few month have in store.

It's now a yes

Fab news, can't believe it but we asked the panel to reconsider Callum's place at the special school and he got in! We found out on Friday and it gave us a good boost and a great start to the weekend.  I think I slept the best I have in a long time on Friday night, I didn't need as much under eye concealer the next morning! 

The week before was tough, a 2 night stay in Bristol Children's Hospital having continuous blood glucose monitoring, liver scan and another brainwave test. Although it was draining and upsetting it was all worth while and it's over now.  We've got to go back on 29th of July for another 2 night stay to have a fasting glucose monitoring test done.  Not looking forward to it but I'm just going to enjoy the next few weeks happy in the knowledge that we've got Callum into the best setting for his needs. Xx

Overload

Today we had an appointment for Callum with the Metabolic Team in Bristol. We've been concerned about how unstable his blood sugars have been since he started walking.  He has to have a metabolic supplement in his drinks in order to maintain it throughout the day.  Callum will only eat certain foods ( mainly orange coloured food)! So it makes a difficult situation worse.

They want Callum to come back into Bristol hospital for 2 nights on Wednesday to have Continued Glucose Monitoring for 48hours.  This involves inserting a device, like an implant into his arm, they then have to put a plaster cast on his arm to keep it in place.  his blood sugar will then be continually monitored and tracked.  While he is on the ward they have also arranged for a scan of his liver to be done as its been enlarged for a while, they also want to get someone from the eye clinic to check the back of eyes.

A lot to take in at one time.

It's so difficult as I know it all needs doing but I'm worried what they will find out...

It's hard because I feel  like I'm abandoning Ronnie again!  Steve will stay at home with Ronnie so he doesn't get unsettled so at least one of us can be with each of

them!

As Ronnies getting older he does pick up on things with Callum and gets so upset when he's in hospital. I think lots of FaceTime is in order so the brothers can see each other!

I feel so anxious about it all x

It's a No then

So much has happened since last post, Callum's doing really well physically and amazed us all by taking his first few steps on his own, without his walking frame in April and week by week he progressed to what we have now.... A lovely little boy who can walk! Fantastic and amazing all at the same time, this has opened up so many doors for him, and us as a family we are thrilled with his progress.  

Sadly we still don't have a diagnosis, we've been seen by metabolic specialists in Bristol who are running more blood tests, he's now on a metabolic regime which we add to each drink to help maintain his blood sugar, as since he's been walking his blood sugar levels have been dipping a lot as he's using more energy.  We also saw a neurologist at great ormond street who thinks part of his brain may not have developed properly so they want to do another MRI of his brain under general anaesthetic and do a lumbar puncture at the same time. 

Callum still attends the special needs group weekly and he has just had a place turned down at a special needs school to start play group sessions.  I'm so disappointed and cannot understand how Callum will manage in a mainstream playground, yes he will have one to one support, but his needs are so complex and he doesn't learn in the same way as others and has fixations on things which take up a lot of time.  I don't want my son to be the different one, I think as times going on I am accepting that he will always be different.  

What I always remember is that he's happy and enjoys everything he does and vice versa for anyone who is involved with Callum.

The next phase of battling for Callum commences now, I think because Callum is undiagnosed it's almost a grey area where help is concerned because its unknown what the future holds and whether he will continue to progress in the same way.  Wish me luck! 

It's been too long!

Haven't written for a while, everything going along the same really.
Ronnies doing really well and we have mastered his sleeping, which has had a positive affect on his behaviour, and he's still really enjoying school which is great.
Callum's had a few up and downs, his blood sugar dropped very low in December and January but the last few weeks have been okish. I've had the usual rollercoaster of emotions recently with everything I think as Callum's getting older its becoming more apparent that he's different. Having a child that's different isn't any less rewarding or enjoyable it just comes with more worry and uncertainty. I have moments where i burst into tears, at the most inappropriate times, but it is just so very heartbreaking at times. i often feel in a bubble with Callum, but then i see something and it just hits me and makes me realise what a struggle life will be for callum. We will, with the help of our amazing family and friends make it as easy and happy for him x

We had a letter from the genetic team today about starting the DDD genetic study, Steve and I have got to have a sample of our DNA taken as well as Callum's, and the first results could take a year and then after that who knows, but at least the ball is rolling now. We have lots of appointments coming up, a metabolic specialist to find out what's causing Callum's blood sugar problems, an endocrine specialist and we have asked to be seen by great ormond street too which we are waiting for an appointment for.
Tomorrow we have a meeting with all the professionals who help Callum to discuss which playgroup he should start in September, I've looked round a mainstream and special needs one and feel the second option would be better for Callum. (Will be glad when its over)! I've also been struggling with Callum's behaviour (if that's the right word) he has become fixated on things (the latest is sunglasses) and often does the same thing over and over again, I'm hoping to get some ideas on how to manage this tomorrow too. To be continued....