Parents of disabled children-Special needs forum support group

hi,
i am mam to a 3 year old and a 6 week old. my baby was is scbu for 4 weeks initially due to feeding problems and poor tone. then due to unusual features ( lovely to hear) which suggested a genetic problem. he has also breathing difficulties due to a small jaw and poor tone. he has had every part of his body scanned, and everything seems ok so far, some results still pending and he may need a repeat mri. his genetic results came back normal to the hospitals shock. and he is at home now ( we had o2 fitted).
over the last few weeks his limb movement and feeding has improved and he no longer needs an ng tube. the concern is his breathing, which according to the docs will either improve as he gets bigger and stronger. or get worse as his bigger body will put strain on his breathing system.
in addition i an aware that regardless of breathing issues the tone problem could hamper his motor milestones.
would love to talk to anyone who had children with these problems or similar
rach xx

hiya,i don't have any experience of breathing problems but my 1 year old has feeding problems and has hypotonia.he has a genetic condition and has had physio since 3 weeks.he still isn't sitting or rolling but he has a special chair and this has helped him so much by supporting him in an upright position.he can now hold his head steady.
i'm glad you have him home and he has made some improvements.other people on here have told me not to worry too much about the future and sort out the here and now.this is so true. look forward to hearing more about your little ones. xx

Thankyou for the reply!
I have been desperate to find a forum where i could find people in a similar situation, or just others with special needs children. you are so right about dealing with the here and now, but i still cant help thinking about the future- though its more short term things that i worry about- the next hospital appointment or assessment by experts. nate has a physio but shes on holiday at teh mo but will start working with him once shes back.
im having a bit of a "wobble" at the minute as im conscious my daughter is getting a lot less attention, and as a result is acting up. she is a lovely but very sensitive little girl and im struggling to spend time with her. nate is just a baby so we can spend some time together but as he gets older, and as his needs become more apparant things will be more demanding. im wondering how on earth i will manage!
By the way your children are gorgeous!
xx

hiya
am being nosy today and reading all posts dont know any ideas about your son but perhaps your daughter could help out when you are looking after your son, little things like fetching nappy and wipes or anything that she can safely help with and telling her how grown up and great she is being a little mum (unless u have a total tomboy on your hands in which case she would prob prefer to change the pooey nappies )
not first hand advice just repeating ideas that i have seen on here from parents with more than one child

hi!
yes she does all that, and can be really helpful and gets lots of praise, but then ten mins later is like a completely different child!
i think its all been hard for her- she sometimes cries that she misses the scbu nurses.
xx