Fran had her first appointment with the cleft team in 2 1/2 years today. It was a really big deal for her and she got very overwhelmed by it; first thing this morning she positively howled in my arms over the whole thing, so much so that she was properly shaking and shivering. I feel bad because i obviously hadn’t prepared her well enough but she has been quite happy about it until today and usually loves it, so it was a bit of a shock. The meetings themselves were a lot to cope with for her, 9 people plus us in the room at one point and she was utterly silenced by it, something you don’t see very often! It is an awfully long time since she has huddled up on my lap 🙁
She also had to have 2 x-rays (“any chance you might be pregnant, mum?” FFS!!!!!!!!!!) which were major events for her too, one was a full facial, stand in this machine that will zoom round your head thing and the other was being alone in a room with a plate in her mouth.
Anyway, the end results of it all are pretty good. X-rays showed all her adult teeth to be there and plenty of them are in good places and the ones in the cleft are in the “right wrong places” – iyswim. Her little misshapen tooth is wobbly and it has it’s adult tooth behind it, which might have been missing, so this is a good stuff. She is clearly growing but the x-rays suggest nothing is fully formed yet, so we’ve been sent away until July when they will look again and possibly make plans for a first fixed brace that will open up her cleft a bit, ready for bone grafting. Seems odd to be making more space, but i guess they know what they are doing!!!!
So the plan is that her first fixed brace might be put in, in about a year but that her bone graft is unlikely to happen before she is 10, or even 11. Plenty of time for growth and getting bigger and more read for it. Some extra work might be done at the back of her mouth, depending on how good her speech is, at about 12/13 and nothing will be done to finally straighten her nose until she is 17, by which time she can choose it herself. Speech therapists were really pleased with her and overall, nothing sprung up to surprise us. Saw a dinky clefty 6 week old too, while we were there. So funny to be one of the big children in the queue. I remember looking at them and thinking we’d never get there.
And her surgeon flipped open his palmtop to show Fran this:
which is still the picture shown to each parent who discovers they are expecting a cleft baby. Such a fantastic thing to know that it makes such a difference to people to see that. Nothing we saw at the time compared to it. Even more fab to know that members of the team are now actively suggesting HE as a possibility to parents of cleft children who are having difficulties 🙂 We’ve done something meaningful.
So anyway, one foot stepped back on the NHS treadmill, but a lucky let off again for a while.
Laughed though; Fran was carrying her x-ray tag back to the surgery and asked why it said NHS. I reminded her we’d been discussing free, tax-payer funded, care the other day and the reasons why children always got free treatment and she said “oh yes, i’m a National Trust patient!” 😆
Middle two went to Hannah’s (thanks Hannah!) and had a lvoely time, then we all went off for lunch/pudding at Tesco – tried on some kid boots and found REALLY NICE ones in Brantano’s, which we will go back to get. Hurrah.
Home again for a chill, then i went to the doctors and got thoroughly told off for making a 30 day prescription last 40 days 😳 and found out the (not Peak Practice at all) reason for his absence. Gossiped with old neighbour a bit, came home, ate, kids all went to bed by 7pm. Eh?
Did remember that me, Ams and Maddy did do stuff together yesterday; we used some pattern block books i’ve borrowed from Sarah and had lots of fun with them.
Thanks Sarah 🙂
Amanda says
lovely piccy of Fran, and lovely post. :0)
Sarah, Dino and Mimi says
That made me smile.
Nic says
That’s great news about all being positive with Fran and how fab that her image and story is being used to reassure and offer comfort to new parents too. 🙂 Not to mention the whole HE thing. Hope you are justifiably proud. xx
Alison says
Good to hear good news of Fran 🙂
Allie says
That picture is so lovely – how fab that it offers reassurance to so many people.
Barbara says
Excellent stuff 😀
Lin says
Lovely picture of Fran. She is such a beautiful girl, as are the others.
The National trust comment brought a smile to my face too. 🙂
Sarah says
Really pleased to hear the meeting results were positive. That picture of Fran is gorgeous and it must be fab for you to think that that’s what’s being shown to other parents!
I’m glad you got in trouble with your doctor too – don’t do it again!
merry says
Yes boss 😉
Although a quiz that tells me i’m 88% clinically insane was possibly a worse shock!
Claire says
Gorgeous picture of a gorgeous girl. Really glad the appointment went well and I’ll ditto what Sarah said about your doctor too.
Jules says
Really pleased to hear the appointment went well. That is a gorgeous piccie, and how wonderful to think it is being used to encourage others.
Ali says
Great to hear how well Fran is doing and I love that her picture is being used in that way. In our situation too it would have been lovely to have seen a picture of an older child with such a positive outcome when F was newborn. A picture like that says so much.
Jenny says
Merry, would it be possible for me to send a link to this entry to a couple to whom I’ve just taught antenatal classes and who’ve just had a cleft palate baby?
merry says
of course 🙂
Carol says
Picture of Fran is lovely. thinking of you all.
Lucy says
You must be so proud.
t-bird says
Such an adorable pic! glad the appointment went okay even if it was a bit much for her at the time (I’ve had the all round the head x-ray so I can really sympathise on taht one!)