St. Caths spine appointment 

This morning was Oliver’s scan.

For those who aren’t aware, Oliver has a dimple at the base of his back with a tuft of dark hair. This is often linked to spina bifida.

It had been noticed from day one but they didn’t have any concerns. Then at his last hospital appointment the Dr decided that it would be best to ‘just check’. So we’ve had a bit of a worrying wait. Not that it would matter to us if it was spina bifida but I think it’s fair to say that we already have our share of worries and potential problems for the future.

If there is a god, it surely wouldn’t throw something else in the mix to test us?

Well there must be, the results came back all clear.

Nothing unusual found and the lady who did the ultrasound reassured us that her girls both have a dimple and it’s nothing to worry about, just the way he’s built.

2017 is already starting off well, let’s hope it continues!

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

1st visit to Alder Hey Hospital 

So today we went to Alder Hey for the first time, we expect that we will be going for visits here regularly.

Today’s visit was regarding Oliver’s testes. When he was born it was noticed by the midwives that they hadn’t descended and after a visit down to the high dependency unit they arranged a scan. At first we were told that he may not have any, after they felt around and couldn’t feel anything. The scan showed that he did indeed have them (phew!) but they were tucked up pretty high. So they arranged a referral to Alder Hey as they said he may need an operation to bring them down.

So we arrived at Alder Hey, a little apprehensive, as the last thing we wanted to hear was that he needed to have an operation. After a relatively short wait we went in to see the consultant. Explained that he had prader willi, as this hadn’t been passed over in the referral as it happened before the diagnosis. He then understood why the testes were undescended and when we explained they had to scan to find them he told us that it would potentially be two or three ops.

We popped Oliver on the table so that he could have little feel to check for any movement, low and behold they’ve moved!! They’ve started to drop down and aren’t that far away from come down in his little empty pouch! We’ve been told to come back in six months to reassess where they are and what may need doing but we have our fingers crossed that they will pop down into place and we won’t need an Op.

Oliver 1 – 0 prader willi