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!