- dysphagia - she cant swallow fluids at all and aspirates them
- global devolopmental delay
- hydrocephulus - only mild
- plagiocephaly/unusual shaped head
She has only just started sitting up unaided in the last week or so and can now sit for 10-15 minutes!! She rolls over now and then but not often, isn't weight bearing on her legs yet but has started pushing her arms up to support herself when on her belly.
Kayleigh-May has an ng tube 24/7 for fluids and is zero fluids by mouth due to her aspirating fluids silently which they discovered during a videoflocuspy - nobody as yet knows why she is doing this. She can eat pureed foods but any lumpy food makes her gag and finger food she tends to aspirate too. Lee has trained to pass her tube as she pulls it out 3-4 times a week, it is a horrid thing to have to do to your own child and he hates it but it saves hospital trips all the time. Also Lee being able to do it means we can go on holidays etc.
We took a huge decision in last couple of months when we were offered a larger home in Stockport area. We knew Stockport was better for healthcare for children so took the chance - best move ever. We cannot fault our new health visitor one bit she is amazing and has done so much to help us not only with Kayleigh-May's needs but also with the other childrens needs. I am so glad we decided to move again it feels right. The kids settled just as well again because we moved how we did in December and it was a smooth move.
Health care planned already thanks to our great health visitor is physio, speech therapy, paediatrician appointments which are all coming in to help with Kayleigh-May and her needs.
The ng tube is causing problems, we have to attach it to her face with so much plaster to try stop her pulling it out that the plaster is making her little face sore. We were given special barrier cream for it but this seems to make her face worse sadly. So we think that a gastro tube will be fitted eventually via her tummy which will save Kayleigh-May being stared at, any long term damage done by the ng tube will be avoided and her skin will become healthy again on her face.
Kayleigh-May's weight gain even with high calorie milk isn't good so we haven't a clue what to do - she eats so much and has 400-500 mls of high calorie milk a day as well as 2 weetabix every morning, 2 pureed meals a day and desserts after dinner and tea that are high calorie desserts yet her weight gain keeps dropping or small gains now and then.
We are always worried about her but do everything we can to make her happy and she always comes across as a happy contented baby who despite her problems always has a smile ready. So we have answers for her since her hospital stay in January and will more than likely get more answers over time but until then we will continue caring for her and fighting for her as any parent would do because despite anything she is our baby and we love her to bits.
Yes sometime we feel alone and like there are no other parents out there in the same situation dealing with the same amount of health problems as us but we know there is and that there are parents who deal with worse, and every time one of our children smile or say I love you to us we know we are never alone so long as we have our children round us and that we are very lucky indeed to have such great children.