Luna-mae.. 7 months old.
My daughter luna Mae was born on the 4th September 2018.
Luna was diagnosed with Hypotonia & hypertonia, global development delay on the 1st March 2019, age 26 weeks. At that present moment in time she was 6.5kg, 64cm long and had an below average head circumference. She also presented a poor and weak swollow.
Luna was unable to latch onto a bottle until she was 8 weeks old. At 6 months old we attempted to start weaning her which resulted to her gagging, choking and turning blue before projectile vomiting the puree. This in turn caused her to refuse bottles. She dropped from 6.54kg to 6.0kg on 25 days. Which lead at an NG tube. There are alot of referalls going around and appointments we are waiting for.
Ultimately they believe luna has cerabul pulsey as all of her symptoms match.
Luna is a big risk to herself especially with some of her muscle spasms. Which are often painful. Some of these happen at night which lead to her head spasming backwards, potentially blocking her airway, or causing her to choke on and inhale her own reflux.
Luna is unable to sit, roll over, reach, grab and will even struggle with fixing and looking at objects. It's also believe that she is having absent seizures.
We are attempting to raise money as luna now has alot of medical equipment to carry around in our car which is no longer big enough. In a few months time she will have a specialist wheelchair made for her to use too. We have been approved for some private therapy in Nottingham which is another reason we need a new car, for the regular travel and benefits this therapy can offer luna. We will be going for a mobility car however this will no be until luna is 3, due to guidelines.
As well as a new suitable vehicle for luna. There is some equipment that will help and guide lunas development, such as the p pod supportive seat. However the NHS do not offer it due to the cost at £900.. An oxygen sensor for at night so we can keep an eye that her spasms are not putting her at risk again a couple of hundred pound and not avaliable on the NHS. Also sensory equipment, specialist clothing for once her PEG is fitted. All these companies charge a lot of money for the adaptive equipment, and clothes that will support and help with her development.
Financially we are trying to save as much as possible however I won't be able to return back to work as luna requires around the clock one to one care. The risk of her suffocating or choking is too high. As well as being attached to her feeding pump 9 hours a day, physio appointments and hospital appointments for her. Currently this month alone I have spent £50 on hospital parking as well as another £40 on tape, stickers and creams for lunas face due to the reactions she having.
Any donation will be a massive help. Please don't feel obliged to donate. We all have our own lives and different situations to live through