An Update on Ffion

Hi everyone,

 

I have decided to add an update to Ffion's blog (courtesy (with much thanks) of Kenny's cousin Adele). I guess some of you may have been wondering how she's been getting on.

 

We waited for a long couple of months for an appointment to see a general paediatrician, which was sparked by my noticing that she was very delayed in supporting her head and couldn't turn it fully to the left. In the meanwhile, her general development continued to progress, just very slowly. She's 7 months now, and can't roll over yet. She has just started to take an interest in toys, but not holding them. She does, however, have a beautiful smile and is more and more willing to share it. 

 

It was easy to say she'd had a difficult start, but as time went on, I wondered if there was something more.

 

Our appointment was on Thursday and was very encouraging. She was diagnosed with probable thoracic scoliosis which is a curvature of the spine towards the top. We've been referred to an orthopaedic surgeon and this referral should happen pretty quickly as her neck and back muscles are beginning to compensate for the spinal problem. She will need x-rays of the area, but we are probably looking at surgery.

 

She was also diagnosed with developmental delay, which was good in a way, because it puts my mind at rest that I wasn't being paranoid! It also means that she gets referred to physio to help her get moving, and speech and language therapy to encourage her to make more noises and to also help with her feeding (we are very much stuck in puree-land and she can still be vomity and retchy). We have a referral to an opthalmologist too, just to check her eyes aren't holding her back. The community paediatrician will continue to keep an overall eye on her.

 

I think the idea is that they throw all these therapies at her in the hope she catches up, and reassess the situation if she hasn't by the time she is 2.

 

Kenny has applied to go down to 2 days a week when I go back to work (3 days) in April, otherwise I don't think we will manage all of these appointments. However, with all the changes that are happening in his department, they are being very slow in deciding. We are also about to move house, closer to Cardiff, which will cut down on everybody's travelling time. Everything has been done, we're just waiting for a date now. Fraser continues to be a happy and sociable chap and is trying to get his head round the concept of a new house. We keep pointing it out it him, but I don't think he really understands what it will mean for him!

 

I will try and find a recent photo of Ffion to put on here, so you can all see what she looks like now. I will update again when we have any significant news. Thank you for your kind thoughts and prayers for us all.

 

Sally x