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

[tietanyan]

Hi all
thankyou all for your warm welcome and letting me vent. we had another hiccup yesterday with the accomodation, they rebooked our family room, and for some reason had only booked it for one night, then they over charged DH for 3 nights. so he is not happy. But little Jethro is king of the ward at the hospital, everyone knows who he is and he inpressed his doctor by walking, he was relieved that it wasnt as bad as he first thought. He agreed with DH that it is CP but he said that CP is just a label and doctors generally say that when they cant find a cause, so that is what he is looking for now, but my little man is king of the ward, he is a case study for all of the students and he loves all of the doctors and nurses (which is good for him usually he hates them) so besides the tiny accommodation rooms and everything being communal (yuk!) all is going well at this stage. tomorrow is the big day, MRI we should have the results straight away as his doctor will be sitting in on it so we will know very quickly whats going on, so everything is looking up at the moment.
thankyou all for your kind words and support, it really helps.
chat to you all when i know some more
have a great day
Jess

[ellasmummy]

DD - haha isn't it just lovely having a diagnosis of 'sh*t luck', really clears things up!! I know what you mean about the cpap, they tried that in hossy with ella, and the plan was to go home on it.....she went absoulety nuts and was holding her breath, and got so distressed they have never tried it again! nasal prongs do the trick though.It is such a tricky area heart/lung/throat, i had no idea how much everyday activites could be affected, even if the issue seems unrelated. Having Ella has certainly opened my eyes to a lot of things, and made us appreciate everything a lot more.

DD and Sally - defs hear you with the frustration in regards to verbal communication (well lack of a lot of other things too ). We attended a 'Hanen' and 'Makaton; workshop, have you heard of or been to either of those? I found it did help, as Ella was non verbal and couldn't sign until about 2 and a half yrs or so. Even now she says mum, dad, oma, opa, and up. and wont sign anything except for food.

TieTanyan - we are waiting for an MRI, as I think Ella show soooo many signs of CP. She had 2 brain bleeds at 6 days old, grade 3 on one side and grade 2 on the other. She used to have seizures from this, but doesn't anymore and is not on any meds, although still has the 'epilepsy' title as you never really get 'rid' of it. She has right side weakness down her whole body, drools quite a lot for someone with all their teeth, and had/has a lot of feeding and swallowing issues. All of these things of course can be explained by things that have happened to her along the way, but I would just love an official 'diagnosis' I suppose. That really sucks about how much you have been stuffed around with accomodation, you really don't need anything stressing you out, on top of the hospital stay and waiting on results! I hope you get some answers from the MRI

[tietanyan]

hi all
well diagnosis is in, jethro has a lesion on the right side of his brain, not sure what caused it but he was born with it, thats all they could tell us, he is now walking (YIPPPPPEEEE) so that is one hurdle over with, yes it is CP which we already Knew just nice having something. hope everyone is well and enjoying their long weekend, off to work, chat soon
Jess

[MistyFying]

Jess I'm glad you have a diagnosis - but better still, your clever Jethro has taught himself how to walk That's good news

[Early Kids]

Jess, I'm glad you guys have your diagnosis and WOOHOO for walking!

Not much to really say, so much going on I can't put things into words right now.

Hope everyone is well

[ellasmummy]

Jess,

YAY for the walking!!!! How exciting!!!

Glad you got a diagnosis, it is always nice to have answers, even if they are not particuarly good to hear.

Sally - hope everything is ok with you

Not much to report on here - same sh*t different day!!

Hope everyone is well. x

[Bridg]

Jess- Yay for DS walking!! Clever munchkin. Glad you got a diagnosis, but bummer it couldnt have been a good one.

Will be back later to do a few persies.

[Isaiahs mommy]

Im not sure if im posting this correctly.. I love the idea of the chat topic.
My name is Crystal and I have 2 children. My son Isaiah has developmental delays, CVI (Cortical Vision Impaiment) and is going to get checked for CP (Cerebral Palsey). My son has a lot of issues with feeding and develpment and no one can explain why. I love the idea of this support group and would love to chat. Again I dont know if im even posting this right.

I was wondering if any one would be interested in joining in on a 'Parenting babies and children with special needs support/chat thread'?

There seems to be a lot of parents on BB that have children with special or additional needs, these needs may however be individual to that family (meaning my DD is hearing impaired and I do not know of any other hearing impaired toddlers on BB) so I thought it would be nice to have a place to come and chat with other parents who understand what it is like to parent a child with additional needs.

This could also be a place to come to find support for any upcoming appointments or surgery your child my be attending in the near future as this can often be a stressful time with alot of unknowns and fears.

When I fell pregnant with my second baby I knew there was a possibility that she could carry the same condition as my DD1 although the woman of BB are wonderful and offered alot of support during this time I would have loved to have chatted with parents who truely understood my fears as it is something they have or will one day be facing themselves.

I think support for parents of NICU/SCN babies is important, my girls were both in NICU/SCN however they were not prem so I feel that I do not fit in when chatting in a NICU based thread as their 'problems' were/are sometimes different to those of prems.

Also, chatting about the day to day parenting and just our family life in general.

I have only touched on a few things, I would love to hear what others think .

[MistyFying]

Hi Crystal... welcome to BellyBelly And yes, you are posting this right

[Early Kids]

Hello Crystal, welcome to BB

Brendan had his paediatrician check on Tuesday and has been informally diagnosed with PDD (an Autism Spectrum Disorder) We have now been referred on for formal testing so he can get an assistant for daycare and some other help.

Hows everyone else?