She has always been a contented baby as if she knew from birth that her siblings take up a lot of time and attention and she loves watching everybody moving about around her. Her favourite thing is when Daniel will come lie on the floor next to her and sing, she loves this and gets all excited and smiley.
When Kayleigh-May was approximately 8 weeks old a cough appeared. It only occurred whenever she drank fluids of any kind... water/juice/milk. After two weeks of this cough Kayleigh-May was getting more and more upset and struggling to consume her fluids and more importantly her milk, so I took her to the GP. The GP examined her and said it seemed to be a vocal problem and he would refer her to a paediatrician straight away. I requested that she be seen by the boys paediatrician who already knew the family.
After this we started to struggle with her bottle feeds. She would get so distressed once coughing fits kicked in that she would refuse her bottles after each fit and it eventually got to the stage where she was consuming about 6-10oz's of milk per day. I weaned her to see if that helped any and she took to baby food and pureed food great and this became her main source of diet so even though her weight gain was on the low side she was gaining weight not losing it. She didn't seem to have any problem at all with her cough when eating solids.
Kayleigh-May also started getting recurrent chest infections and then she was admitted to hospital as she was totally dehydrated, very wheezy and really unwell. By this stage she was only drinking 2 or 3 oz's of fluids a day. By being admitted to hospital she got to see the paediatrician before her actual appointment, the initial diagnosis was reflux and they started her on three types of reflux medication to try sort it out.
As well as this it seemed she had bronchitis and a chest infection, then tests came back she also had rotavirus. So a very unwell little girl who eventually needed a drip to rehydrate her for 24 hrs. Once the drip came off Kayleigh-May still wouldn't drink fluids and it got to the point it seemed she had developed a fear of her bottle of anything that represented fluids going into her mouth. So an ng tube was put down to tube feed her fluids.
During this time her paediatrician became concerned and said she wasn't convinced the chest xray was showing up a normal chest infection, that it seemed more like some kind of fluids or matter on her chest. This as well as the severe coughing fits Kayleigh-May was having seemed connected, as well as the fact Kayleigh-May at nearly 7 months old couldn't roll over, reach out for things with her arms, attempt to sit up unaided and couldn't sit up aided. She was also very, very floppy in herself. So the paediatrician rang a specialist speech therapist who deals with babies who have feeding problems.
The speech therapist came and she spent over an hour and a half with Kayleigh-May observing how she reacted towards the bottle and listening to her vocal areas and chest areas etc. Kayleigh-May wouldn't drink from her bottle but when she fell asleep on my knee I managed to replace the dummy with the bottle and she started drinking. By the time the first 20ml had gone down the cough had kicked in and the speech therapist knew immediately what the problem was. Kayleigh-May had dysphagia which is difficulty swallowing - her brain isn't telling her to swallow the fluids, all the time she keeps breathing the fluids in which means they are entering her lungs and causing the coughing fits.
She is due a videofluroscopy so they can find what level her swallowing is capable of. At the moment she can handle 4 month baby foods great but no fluids and no lumpy food. We are now encouraging her to take few a ml from the bottle then the minute the coughing starts the rest by tube and until we know how thick her food can be. As she projectile vomits on lumpy or stodgy foods she has to stay on 4 month baby jars. This is a problem that can not be fixed but can be dealt with and managed and if it means Kayleigh-May has to have an ng tube for a long time then we will manage.
Kayleigh-May also had a head scan. This has shown up two of her ventricles are larger than they should be and she has extra fluid in her brain/skull area. We know that this is going to need monitoring as her head shape is already unusual but not overly large - it is in fact quite small, so for this we have no answers as of yet but hopefully will in the near future.
So now as this is typed I'm sat in a hospital room with my daughter and we have been here for 11 days. Managed to get some answers and still waiting for some. At the moment no-one knows the reason why she hasn't reached her milestones as yet, but hopefully with help from physios and the paediatrician and speech therapy team she eventually will.
In the meantime I will learn to cope with another child who has disabilities but is still perfect in every way in my eyes.