Those of you paying attention will have noticed I didn't post in August. That's because the 2 year post-op appointment was cancelled, and after much re-arranging, we ended up going on 29th October 2015. We took big sister as it was half-term and Daddy also took the day off too. We went to the British Museum to look at some of the Roman artifacts and meet up with Grandad who works there, & then headed to Great Ormond Street Hospital, via Coram Fields (play area) just the back of the hospital.
We were approached whilst waiting by the Clinical Genetics team for the first time. The lady explained that participation in the genetic study of craniosynososis should have been discussed around the time of surgery and if we were acceptable to it, she could have had bloods taken then, but somehow it didn't happen. So we discussed with her the options and participating.
We are keen to assist in the research to identify genetic causes and also perhaps give Kate reassurance if/when she wants to have kids of whether/how likely it might be for her to pass the condition on, so we agreed for her to give blood which was arranged there & then, and around our original appointment. They put on cream to numb the pain from the insertion which takes 30-40mins to work. She was a star and made the most fuss about removing the plasters, and didn't feel them take blood even though I was holding her & we had an additional nurse distracting her with a book just in case!
I think they might come to us depending on the results they get from her anyway, but just to be sure I am going to email the genetics lady as there are other factors from the parents that can affect the genetics, in case they want blood from us too.
At the 2 year post-op appointment we saw a lady this time who wasn't involved in Kate's pre-op or surgery. She was happy with Kate's look and recovery though agreed that there is a slight skew in her face, that I still am aware of. She advised that that there would be potential for reconstructive rhinoplasty (that's a nose job to most people!) to align her, possibly around teenage years if she feels it necessary. That was the first time that was mentioned. It would not be classed as cosmetic due to her craniosynostosis, so considered as due to the craniosynostsis, a medical condition & covered on the NHS.
I asked if she had had the operation sooner, i.e. when she was younger, and therefore there had been less time for the asymmetry growth to continue, that this could have prevented this skew. She said that they prefer to do coronal craniosynostosis cases between 15-18 months because if done earlier they tend not to work, and that cases where the surgery had been performed earlier in other countries, that they were having to re-do the surgery. How awful!
She said they'll probably see Kate next when she is 6 - so 2 years time.
We were also asked to go to Clinical Photography for post-op photos and agreed for photos being made available for teaching of healthcare professionals & medical records. Kate was an absolute star, doing exactly as instructed for the angles of photos they wanted to get.
Kate turned four a couple of weeks before the appointment and is as bright and cheery as ever. She now understands that she had a big operation on her head in the hospital in London, though no actual recollection of it, of course.
Luckily, most of her memory of experiences at hospital have been good and we always keep up-beat about going there, so she almost looks forward to it! On returning home I found we had received her next eye appointment date for February locally. I expect we will see the consultant as well then, as have the normal eye-testing.
Kate started a new nursery in September and has settled in well. This pic is a recent one I like of her after filling the party bags and wrapping pass the parcel for her 4th Birthday party.
Next update will be after Feb 2016 eye appointment.
