Happy Mothers day, to all the special needs mummas, Hope we all managed to stay out of hospital with our lil ones, We celerbrted the first mothers day out of hospitalin 5 years yesterday, which is pretty awesome.
I dont know many of the kids or mums in this thread these days, but figured i would introduce my self.
Im amy Mum to a awesome 5 year old.
She is so pretty and cute, and has a gorgeous giggle that her whole body does when she laughs. She can talk up a storm and her walking is getting better over time, She has lots of ups and downs so she fluctuates with her stills a lot.
Mik has a few differnt diagnosis but the one that ainly effect her is her Unspecifific mitochondrial/ metobolic disorder of un known origine, Well what does that mean, it basicily means she has a mito disorder but which one we dont know.
How does it effect her, well with a whole host of issues some big some small, long and the short of it is she has had about 20 operations over the years, some on air ways but mainly stomach and small bowel and to place lines, one to fix her eye and one to remove muscle for analysis from her leg. She has next to no growth hormone in her body so take injections for that, ( which she hates) but they are helping her HUGELY she is now 97.1cm which is great for her she was 80 at the start of treatment neally 2 years ago they also help slightly with ehr blood sugar levels, Mik has a nastry habit of dropping her sugars with in moments of her IV stopping or hald hor of her feed stopping its one of her most frustrating and dangerous traits.
Mik feeds through a tube into her small bowel and is on that 24 hours a day she only comes of for baths ( a luxury there was a time not even for that) she has a drain into her stomach that is atatched all the time and a bag on the top of her small bowel, She runs two pumps al the time these days one for feeds and ther other for something else, we are lucky to have tini little pumps and bags from the US so the tw pumps are lighter than one kanger pump. when she is feeling up to walking she carries them on her back in he tinny little bag and we clip her drain to it as well and she gets around like that. Its amazing to see her jig around the housee the child they said at one point surprised them by making it as far as she had. that was 2 year ago.
She has global developement delay and although she can say just about any word you tell her to the understanding of them words is limited, and she has social issues etc etc who wouldnt dealing with all she has, She uses a wheelchair alot but can also walk a bit which is awesome. She has massive melt downs when she cant understand or when she is just being a funky monkey and when she is sore she goes very with in her self and there is no reasoning or explaing, Her level of understanding varries hugely in accordance to how her health is at that point in time.
We see ther therapists every week and she ges to ed support school although is having 6 weeks of this term under the order of her drs since last surgery. We are in the process of getting her a new wheelchair but as you all know takes months like someting 6 to nine months which is fine as we have a chair for ehr now which is fine but they are ordering her chair for the next 5 to so years.
The last 5 years have been rough and I can honestly say to the newer posters here the early days was the worst, the days of the unknown whats this whats that trying to explain things to drs i didnt realyl get my self, the scarredness etc, it does get easier. You get to the point where its your new normal where its all part and parcel of being a mum, Its still hard bloody hard and still heart renching but the day to day feeling get easier that doesnt mean the bad ones dont bring you right down over all I think day to day it gets easier.
Mikenzee is more effected health wise than neuro wise, sure she ahs her neuro issues epilepsy, and malformation in her brain and developement wise and hypotonic CP but she isnt hugely effected neurologicaly as a first site thing its when people get to know her that them querks shine through.
I hope you all had a lovely mothers day and i look forward to getting to know you all.
Hi to my long time mates Peta and Sue, remember our old chat threads lol, How things have changed hey love you guysxxx