We're home
... and it went brilliantly. We'd always been told that Nell's speech problems resulted from some non-specific, mysterious, super-weird DiGeorge palate anomaly that wasn't, alas, one of the known and correctible DiGeorge palate anomalies, such a a sub-mucous cleft (where the cleft is hidden by the roof of the mouth).
Ergo, we all believed that she was really pretty unlikely to ever speak intelligibly. As I wrote below, we were told that this was an exploratory sort of surgery, and wouldn't produce any tangible result.
Anyway - they went in, the genius surgeon found an occult (i.e. cunningly concealed, even during X-rays and videofluoroscopies) sub-mucous cleft, AND FIXED IT. It honestly feels like a miracle (and like someone's listening when I pray for things that don't sound possible). We are now cautiously optimistic that, with further corrective surgery, Nell may actually speak "properly" and clearly. I am literally delirious with joy.
Other completely amazing thing: she was very poorly and on a morphine drip until Friday lunchtime. It is now Monday morning and she is back at school. Her mouth is sore, obviously - they repositioned the muscles and the whole shape of the roof of her mouth is altered - and she has to keep off crunchy food for a bit, but that's it: she's on nothing stronger than Calpol. Children are amazing. Doctors are amazing. Surgeons are amazing. The world is beautiful.
The picture is of Nell on Friday afternoon, dripless and morphineless, eating, incredibly, not ice cream but a (lightly) toasted cheese sandwich.
You might be interested to see these two articles at the CLAPA site
http://www.clapa.com/article.php?id=28
http://www.clapa.com/article.php?id=36
Posted by: fannyanntut | 1 Sep 2008 14:45:13
So pleased for your beautiful girl - makes you believe in everyday miracles.
Posted by: Kate Lord Brown | 12 Aug 2008 21:01:02
Fantastic news and another great picture of an amazing and inspiring little girl.
Heather
Posted by: Heather Wilkinson | 12 Aug 2008 14:31:11
Please do you have any more information. My daughter has a submucous cleft and barely speaks - our surgeons here are telling me surgery won't help her - maybe they are wrong?
Posted by: Jill | 29 Jul 2008 19:48:29
Oh hurrah - am so happy for you all!
Posted by: Philippa | 22 Jul 2008 19:32:14
I'm so happy for you-thank you for the post, it reminded me that sometime good things do happen to the people that deserve them. Look forward to hearing what Nell's first words are.
Posted by: Catherine | 21 Jul 2008 10:58:03
Yay, go Nell! So glad it all went so well, reading this made my day as well as bringing a tear to my eye. Best wishes to all.
Posted by: J Graham | 12 Jul 2008 21:24:25
Fabulous news! And doesn't she look wonderful in her Ugg boots?!
Posted by: Olivia | 10 Jul 2008 20:57:47
How utterly wonderful. Nell looks gorgeous (and like her, I'm still wearing my Uggs in July).
Posted by: Mopsa | 9 Jul 2008 22:02:27
oh, wow. Congratulations!
Posted by: navi | 9 Jul 2008 21:18:31
I just popped in to see if you'd had time to post following Nell's surgery and this is just the best news imaginable. Very happy for you all.
Great picture of a lovely little girl.
Angie x
Posted by: Angie | 9 Jul 2008 19:42:22
This has really cheared up my day on this dull rainy morning! Yes, surgeons are amazing. We hear so much about the problems, but so little about the miracles they perform every day. My son's had 10 operations and has come out of every one in an considerably better condition than he went in. And, he still loves hospital ?!!
Posted by: Annabel | 9 Jul 2008 11:42:52
Look at the darling!
You may have to change the name of this blog.
Congratulations on a good outcome.
Posted by: Sara O'Leary | 9 Jul 2008 00:30:35
SO pleased to read this and so happy for Nell and for you all. Great surgical outcomes always give me renewed hope and inspiration. The jury is still out on Alannah's palate and speech, so particularly love your positive story. Thanks!
love Rosie
x
Posted by: rosie | 8 Jul 2008 21:52:29
Wonderful picture. I really enjoy reading your blog - thanks from a fairly new mom on the special needs scene and congrats to a very clever Nell back at school.
Posted by: Millay | 8 Jul 2008 18:54:35
Yay! Fantastic news.
Posted by: Elinor | 8 Jul 2008 17:18:35
I am so pleased, I know how stressful it all is. My son had the same surgery a month ago (I imagine under the same amazing surgeon). He's two, we were told he would never speak due to his chromosome disorder so have hope this will improve things. It's still very early days but since the surgery he is babbling more and making new sounds (in just a month!), so lets hope Nell starts chatting very soon.
Posted by: Caroline | 8 Jul 2008 17:09:12
Well done - a great win for all.
Posted by: Paul OZ | 8 Jul 2008 04:11:38
What a star! I am so pleased to hear that Nells' surgery went so well. I am amazed that she's back at school already - what an amazing little girl you have! I follow your blog a lot - my daughter (18 months) has complex congenital heart disease that's not correctable but which requires life saving surgery so I know how it feels to see one's child go through risky surgery. I too want to thank the NHS on its birthday for giving me the gift of my daughter who would not be with us today without the treatment and surgery she has received on the NHS. I am so grateful.
All my love to Nell x
Posted by: Maria | 7 Jul 2008 23:22:20
What a gift :) Well done to all especially brave and beautiful Nell.
This story turned my day around - I was on the verge of throwing my stroppy teenage daughter out to fend for herself!!
However, you have cheered me up and calmed me down. There are tougher things in life to contend with than untidy bedrooms, sibling rivalry and unrelenting cheek.
Warm wishes to all the family.
Posted by: Di | 7 Jul 2008 15:28:28