This week was the first visit to a paediatric consultant.

He hasn’t seen Oliver since he was about two weeks old. He had noticed a difference in him, which we expected as he’s a totally different baby in comparison to then. He checked him over and mentioned the dimple at the base of his back. This isn’t something that was new to us as it had been discussed before but had never been highlighted as a concern but as somethingto watch. We aren’t sure whether it, perhaps, should have altered by now or if they’re being extra cautious but he’s now had an appointment through for his scan early on in the new year. We aren’t too sure what they’re looking for but we will cross that bridge when we come to it.

More great news though is that our consultant had spoken to his friend at Alder Hey, who happens to be an endocrinologist, he agrees that Oliver needs to start growth hormone in the first year of life.

This was like music to our ears

We know from talking to other families that the growth hormone conversation can be very much one way or the other, the doctor will agree and start it or you have to battle for it. We’ve had documentation sent over from other families in preparation for an appointment with the endocrinologist so that we can push for it. It was a huge relief that we know that we aren’t going to have to battle for it. We will still go armed with supporting evidence but are hopeful that we won’t have to use it.

We aren’t sure what’s going on with all of the teams that support Oliver, we know that the consultant that we’ve just had an appointment with isn’t the consultant he is supposed to have, this is the same for our speech and language therapist (SALT) but we have a feeling that because of his condition being rare that staff don’t want to let go of him. They want to see his progress and help him on his journey. What ever the reason is we’re grateful for the consistency not only for us but for him as well. 

Now for family time, Christmas is my favourite part of the year and we hope that in the future it will be Olivers favourite part of the year. Not for toys and presents but for the family time that we have.

From all of the Edmond-Jones house hold have a lovely Christmas 🎄🎅🏽 we hope next year has as many happy memories as this year xx