Parenting babies and children with special needs support/chat thread?

[DaintreeDream]

Hello Sally and Bridg

Maybe we can chat in here and see how many others jump on board?

I will introduce my girls.

Matilda is 22 months she has a partial chromosome 5q deletion, pierre robin sequence (cleft palate and small jaw) her jaw was destracted at 9 weeks of age and her cleft palate is yet to be repaired, we are on a waiting list for approx. September, she is fed via a naso-gastric tube and has been since birth she does eat minimal solids but does not drink anything orally, Matilda also has moderate to severe hearing loss and wears a bone conductor hearing aid resulting in speech delay, she also has severe sleep apnea. Matilda spent 3 months in NICU/SCN.

Annabelle is almost 4 months, she has congenital heart disease - hole in the heart and coarctation of the aorta, she had open heart surgery at 6 days old. Annabelle was on a naso-gastric tube for just over 5 weeks when we finally were able to remove it and she is now fully breastfed. Annabelle was in the cardic ward and PICU for 16 days from birth.

I 'think' I have covered everything.

I would love to chat with other Mums (and Dads) with children with additional needs as sometimes I find myself saying 'oh don't worry your child will walk when they are ready, Matilda didn't walk until she was 21 months' - then I remember that she has a chromosome deletion and feel that it doesn't really count as she is 'different' if this makes sense?