Kayleigh-May between September and January spent lots of time in and out of hospital with various illnesses which was hard. She has also been under a lot of investigations.
Kayleigh-May's list of diagnoses so far are now...
- Larygeneal cleft (cleft on voicebox) this is cause of her aspirating
- Twisted windpipe
- Slightly leaky heart valve and another heart valve is going in total different direction than it should be but thankfully no surgery needed
- Low muscle tone - she is still not walking at 20mths
- Mild hearing loss - she cant hear low sounds
- Severe reflux - on 3 types of meds for this and it wasn't picked up on till she was 17mths!!
- Global devolpmental delay
She is still zero fluids until the professionals feel she is well and strong enough to be operated on to fix her cleft and she now has a peg feeding tube which goes straight into her stomach. Since this was fitted she has gained weight, come on loads devolpmentally and is getting stronger.
We are currently waiting to see genetics team on 12 April as the paediatrician feels she has a genetic disorder as there is no other reason why she has so many different things wrong with her, yet she is still the most happiest, smiley baby i have ever known. She will give anybody stranger or family member a cuddle and kiss. She is now having regular portage sessions who are brill with her and we can see the benefits of portage.
We are still a long way from knowing what is exactly causing Kayleigh-May to be ill, behind and have so many health problems but with the support from our health visitor, close friends and family i know we will get there one day and we will always be there no matter what for our darling happy girl.
Daniel was confirmed as being selective mute. The teachers in the unit he is in learnt everything they could about selective mutism and finally after 3 years of being mute in the school environment and him being put in a special needs unit where there is only 7 other children in his class he has started communicating!! I am so proud of him :) He still goes mute at school from time to time but they understand and know how to deal with it so it isn't causing a problem as it was, he is still mute when around strangers or when he see's people in unfamiliar settings but we understand and work with it with him, now he is talking he is receiving speech therapy to improve his speech and language.
He still has dangerous behaviour and we now use a crelling harness on him when out and about with him for his own safety. He has also started licking things ie windows, fences, gates, tables etc behaviour we try to ignore and he has also started being violent towards his siblings and occasionally myself and spitting at people as well but we are trying to get him more help and will get it for him eventually.
Lewis is due to see the clinical psychologist on the 16 March for his assessment of autism. I am so nervous about this - what if they don't see what we see daily, what if i am wrong about his quirks and ways. He is also going to have an ados assessment done - date not arranged yet. He is doing great at school and the small group setting he is in helps loads.
The twins are amazing their teachers as well as baffling them, they both naturally write and draw upside down!! Their senco has never come across this before and really doesn't know why they do it. We are waiting for education psychologist to come see them and try to work it out lol. Lewis draws the most amazing house but it is totally upside down.
Adam is being re-assessed for adhd, his school feel he doesn't have adhd so camhs are involved with Adam. His temper is worse than ever at home, he snaps within a blink of an eyelid, his personal hygiene is still poor and we are really worried how he will cope when he goes to high school in September.
Chloe my little princess is doing great, she started a new school in September and they picked up she is struggling with her work, mainly maths, so has been put on school action and given an iep. We are working with young carers group in Stockport to give her more support with her school work and get her back up to scratch.
Me and Lee continue to stay strong and dedicate our lives to the children and meeting their needs. We really couldn't do this without the support of our health visitor who is amazing in her support to our family, also good friends we have made during one of many parenting courses we have attended. We are getting married end of March and the children are going to be our bridesmaids and pageboys... Adam will be giving me away - an important job, I thought he was the suitable person to do. He is very chuffed with this job and cant wait.