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....

It's been a while

Alot has happened since last post, ronnies got his legs in casts again to break his toe walking habit. He had them on for four weeks to start with it but as soon as they were off he started doing it again, so he's got them back on for six weeks this time. He's so good with it and doesn't really notice them.
Callum's appointments have continued and he went in and had his blood tests to check his hormones as he's not growing as he should. He had to stay in overnight as they wanted to monitor his blood sugar and tested it every 3 hours through the night. They put a drip in the next day and took blood every half an hour for a 3 hour period. That was tough, probably the hardest thing I've had to do with him do far, I know it needed to be done but each procedure is more distressing for him.  We have a 4 week wait for these results.  If he has a problem with hormones he will need an injection every day until he's in his 20's, if his hormones are ok then the reason he's not growing is because if the syndrome (whatever that may be) and they won't be able to do anything about it.  We saw the paediatrician last week who told us the muscle biopsy came back clear which is great news x he told us that Callum will always have low muscle tone and things will always be hard for him, he will also need to wear splints when he walks.  They also discovered he has a heart murmur which they think may be caused by his muscle tone so got to go back in two months about that.  We are awaiting a walking frame with wheels to help him learn to walk. I really can't believe he's going to be 2 in December but,  No matter how hard things get or how upsetting things are we are lucky to have Ronnie and Callum and I am going to enjoy every moment with them
Both xxxx

Overload

Well what a week, Callum had his muscle and skin Biopsy and grometts last Thursday. He did really well and has recovered fully. We now have a 2 to 3 month wait for results. We had cheek biopsy results back which were clear so that was positive news.
Ronnies ear has been fine since his grommet was taken out two weeks ago do that's good. I took Ronnie for his appointment with the consultant about his toe walking this afternoon, he's been doing this ever since he started walking. He's had physio and exercises to do but nothing has worked. So today he has had half leg casts put on both legs to break the habit. These will need to be changed every week and remain on for 6 weeks. Poor little chap, he's been so good about it and taking it all in his stride. I honestly feel like I live at the hospital. It's not the best timing either with him just starting school and he's just joined a local football club. We will make the best of a difficult situation, and hope that this does the trick. Would love to know when and if things are going to get easier and less worrying xxx

Ronnies First Day at School

Today was Ronnies first day at school, I can't believe he's so grown up! He looked lovely in his uniform and went in ok to start with but did cry when we left. It was a long wait to collect him as he does full days straight away. I didn't need to worry as when I picked him up he came running out and was so happy I am so pleased, we are so lucky to have got him into that school with all his friends x x
Ronnies ears have been causing him problems again and he ended up in hospital overnight with it a few weeks ago. We saw the specialist yesterday and he needs to have the grommet removed as its the cause of the continuos infections. He needs a little operation for that to be done, not very nice for him but will sort the problem out.
Callum started back at his special group today and we tried to do some painting with him but he got very upset when he got paint on his hands, he's very sensitive to textures but we will keep trying. He has progressed well recently and has started to sit up on his own and crawling a bit too. Both are fantastic to see and it's nice for him to be able to sit up himself now too. We are nearly 5 weeks into the 6-8 week wait for the results of his cheek swab, every time the phone rings my heart sinks. He's going to Bristol for his grommets and muscle and skin biopsies on 20th of this month do will be a relief to get that over with.
Still trying to keep positive and hopeful that whatever it is causing Callum's problems won't be to bad.
Very lucky to have such lovely boys and so proud of how well Ronnie did today at school xxx