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Sunday 2 March 2008

UK Diary - day 2

Nice day - no doctors planned so we can ease ourselves into being in London. Got the girls ready and we had a leisurely breakfast at the hotel - an eat as much as you like breakfast buffet... O-Ooh -there goes my diet! I need to lose weight but when faced with 'already paid for' breakfast - one needs to make the most of it, don't they? I mean it would be wasteful not to do so - wouldn't it. We decided we would have big breakfasts and dinners and light lunches (if at all). This decision meant that I wholeheartedly threw myself into my breakfast - adding in extra for energy!

Spent the morning walking to Covent garden (15/20 min walk) and Oxford Street. Bought a few bits and pieces - nothing very exciting. Had a quick soup and then headed to my sister-in-law's house for tea and an early supper. Was lovely to spend time with my sister in laws and their kids. As soon as the girls got there - they disappeared with their cousins, only to be seen again when it was time to leave.

Went to bed early, exhausted and thinking about what the day ahead held in store for us. We would be seeing a Paediatrician in the morning .... what lay in store for us????? Would we finally be closer to having an answer for Talia. Before sleeping we made the following list:

Key Questions
  1. Do you think this is neurological, a syndrome or metabolic?
  2. Does she need an MRI? If so what are the pros and cons? Are there any risks?
  3. Is her TSH abnormally high - could she need treatment for hypothyroidism?
  4. If she goes on like this weight-wise what can we do? How can we maximise her calorie in-take?
  5. We have looked at some syndromes, e.g. Prader -Willi, William's - does she look that she could have one of these?
  6. Could she have a dairy intolerance? Should we be trying other milks - such as Almond?
  7. We have been using Maxijul - how often should we be using it?
  8. Should we be giving her vitamins?
  9. What can we expect in the future?
Symptoms and History

  1. Weak muscle tone (hypotonia) especially her hands
  2. Low intake of liquids - diapers are rarely wet
  3. Problems taking a bottle but takes breast fine
  4. Weight issues (failure to thrive) - weight leveled off and actually lost a little over last month
  5. Born small - 2.320kilos, Height - 45cm, via c-section as she was breech
  6. Weight gain fine for first 7/8 weeks
  7. Dribbling when exerts energy (but could also be due to teething)
  8. Delayed developmental milestones
  9. Small head but in proportion to overall body
  10. Suffered reflux - first 3 months
  11. Choked in August (slightly) - could this have affected her
Pregnancy
  1. Bleed at 26 weeks
  2. Bad flu and prescribed antibiotics at 32 weeks
  3. Partial Bed rest from bleed till end of pregnancy
  4. Intrauterine growth problems in womb after bleed. Baby grew at a much slower rate
Feeding (typical day)
  1. Early Morning - couple of oz (40-60ml) milk
  2. Cereal with milk or fruit with milk - 125ml (max)
  3. Lunch - 125ml of veggies or rice with chicken etc, often followed with a pudding (yogurt, fruit etc
  4. Dinner - 125ml food and sometimes a pudding
  5. Milk before sleeping - about 60ml

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