My daughter Morgan Kristina was born 16^th May 2003, 2 weeks her due date in what was quite a quick labor. We arrived at the hospital around midday and I gave birth around 5.30pm.  Morgan was 6lb, 7oz.  Her body temperature was below what it should be so they put her in a heated baby cot next to me.  She was born with her right foot tucked up the back of her leg and the foot looked out of place and misshaped. We were so upset at the time and my husband was immediately onto consultants and private doctors to see how it could be fixed. A specialist was available through our stay in the hospital for those 2 days, but most of the diagnosis was that she had been lying in the womb with her foot caught and it would correct itself when she started walking. Thinking back now, if this had been all we needed to deal with that would have been a blessing. We were given exercises to stretch her foot and leg back into place.

Once we were home, we realized that Morgan was awful at feeding. She was bottle fed, but I could be sitting for an hour to feed her a small amount of formula only to start again to try and get some nutrients into her. She never really cried or was upset, but she must have been hungry as she was eating very little.  The health visitor visited regularly, trying to encourage more feeding. She was putting on weight, but the smallest amount (at least she wasn’t losing weight which was the main thing at the time).  

Once we reached the point where we could give some food, I think that might have been 6-8 weeks, I know these times have varied through the years, we would quarter a rusk in her formula and she loved it. She probably felt elated at having been properly fed after all these weeks of just formula. We gradually over time introduced some more puree foods and she always ate them fine, although puree foods continued for Morgan for years. Even now, although she eats proper dinners, it still has to be mashed down nearly pureed so she does not choke.

Morgan gained weight very very gradually. We were put in touch with dieticians because she was always well below her weight, but food supplements interfered with what she was actually eating so I just stopped them.  In hindsight when I look back on some health professionals, they had been more in a state about what Morgan should be eating or should not be eating when I should just have done what I thought was right myself. Eventually I did and Morgan is a good weight and height now, she just needed a little extra time to get there.  Morgan is a fabulous eater now, she has an extensive menu of foods she likes, even better than me, but I am such a fussy eater.

Morgan slept well in her first months. I would say from May to October and then all of a sudden Morgan would not sleep through the night. She was up through the night every night, and it was a challenge to get her back to sleep, if you could at all. We were all exhausted.  No sleep was worse than anything at this point, so this was very draining and unfortunately for us still is. Morgan still does not sleep. She falls asleep about 6pm when she comes in from her Day Centre, then partying at 9pm till god knows when, sleeps another couple of hours and then up again.  However in the last 10 years, we put her TV back on at night (the only thing that works) and she eventually falls asleep watching her favourite programmes, such as Something Special, Mr Tumble, Justin’s House, The Wiggles, Hi Five and Barney.  Morgan likes these programmes that she has watched since she was a baby and had never taken to other programmes that we have tried to introduce her too, so she just watches all of these.  

It keeps her happy and we always take the iPad out if we are out to dinner and she will watch some TV to let us eat.  We did try Melatonin and it worked sometimes, but after taking it for a while it stopped working. We have not used it for years now and she doesn’t take anything else at the moment.

Morgan also had hypotonia. In the early months she could barely lift her head although not for the want of trying, you could see she was really trying hard, this continued to show. She could not weight bare or sit up straight by herself. She needed support, but in time ( I cannot remember how long) she could hold her head, weight bear, and sit up straight (sitting up straight was always a challenge as she always wanted to lie down she still does this). She cannot walk independently, but she can walk with someone holding her hand. It seems as if she is scared to let go of your hand as she can walk, she just will not do it on her own.  She uses her wheelchair although I encourage walking where I can within the day centre and house to give her exercise.  Maybe one day she will walk.  What a dream that would be.

In regards communication, Morgan, I think, understands exactly what we are saying. Sometimes I feel when I look at her she has “locked in syndrome”. For example, if its dinner time, and you say that to her she rubs her tummy. She will come to you when she needs her pad changed (she cannot tell you before the pad is changed that she needs the toilet, that would be helpful). If she has made a mess of her TV room and thrown all of her toys everywhere, she will get in a wee telling off, she knows she should not have made such a mess. Another example would be asking Morgan what she would like to watch on TV. She would say Giggles (meaning Wiggles) or Umbel (mean MR Tumble). She will sing along to the beginning of songs, maybe one or 2 words but in context of the song that is on but not much more than that.  These are just a few examples.  But as you can see still very limited communication.

When Morgan was about 6 months old were referred to a Paediatric Doctor where over the course of a year, we (my husband and I) had blood tests taken. Morgan attended development specialists, MRI Scans, Brain Activity Tests until eventually the diagnosis was Global Development Delay. Basically they could not find anything wrong with her although they did refer to a possibility of Angelman Syndrome (but test was not conclusive for this) and Cerebral Palsy.  Now these tests would have been 2004/2005, so a long time ago, and medicines, genetics and research having come a long way since then.

Morgan is a very healthy young adult (as she was when she was a child). She does not suffer any seizures, has visited our GP only twice in her life, she very rarely catches the annual colds or bugs that the rest of the household get.

Morgan attended Additional Support Needs Nursery, Primary School and Secondary School (these schools were all linked with main stream buildings where the campus was shared with main stream children) until the age of 18. She now attends a Day Centre with young adults of a similar age and ability. It’s like a big nursery with an arts and crafts room, music room, sensory room and messy place kitchens. She loves it, clapping her hands as soon as we turn into the street.

Morgan is generally an extremely happy young lady who does laugh all the time, even has an uncontrollable laugh when there is not anything funny, which is funny to us as she looks so happy!  She is happy go lucky and takes everything in stride.  She does sometimes get upset and seems frustrated, as if she wants to communicate with us (which must be very frustrating to her) but this is rare.  When she is a bit stressed she crosses her legs and stretches out pulling her legs in and out. She did this more when she was younger and occasionally does this now, but getting her up to standing position and walking her around a bit eases this, maybe some calpol in case she has a sore stomach.