Appointment and Equipment Updates

We had an appointment Tuesday 21st September at Heatherwood with Dr Ed Blair who is a Genetic Specialist from Oxford.  He went through a little bit about how the gene anomoly works and how it would also affect any future pregnancies with the odds being 25% (1 in 4) of a future pregnancy being affected by SMA.  Statistically both Jason and I are carriers and these blood tests will confirm that.  CVS Testing will be able to tell if the pregnancy is affected.  We decided to leave the testing of Archie until he was older.  This is one of the first appointments in 5 months that Lily-Mae was poked and prodded which pleased her no end.

Lily-Mae's R82 chair has now been on ordered 8 weeks so fingers crossed we should be taking delivery soon.  Also her beautiful new white scotia cot from Centromed should be here within the next couple of weeks.  We also have a sales rep from a company called Leckie coming out at the end of October to carry an assessment for a standing frame called a Squiggle.  Now all we need is a lovely 5 bedroom house to fit everything in to.

Lily-Mae has her follow up appointment at GOSH on 14th October with Dr Robb and Physiotherapy as well as a follow up sleep study to check her bi-pap levels are correct and don't need adjusting.  I am trying to get a repeat videofluroscopy squeezed in as well so I can hopefully give her more tasters orally.

Her speech is coming on leaps and bounds - she says lots of words including mum, dad, archie, nana, dad-dad (grandad), bobos (auntie jodie), bath, cake, apple, horse, dog, chicken, bird, lub u (love you), pub, lager (courtesy of her dad), spoon, book, sam and lots more.  I have to call our local Portage team who are going to come round and do some learn and play activities with her which I hope she'll enjoy.