We got up bright and early - this was the big day. I lept out of bed at 5:45pm - after all we had looked forward to this day for months. Each doctor, each new medical institution brings with it new hope, excitement and a little nervousness too.
Perhaps this would be THE DAY - the day when we find out what is going on, the day - maybe it will put an end to the waiting , concern and uncertainty - maybe will get a diagnosis... Or will it open a new can of worms - whatever it is we are moving forwards and we need to do that.
Anyway I got the girls ready and we had breakfast at around 7am before heading to my brother-in-law's house. My husbands parents and my sister-in-law were waiting for us - we deposited our kids with their grandparents and cousin and then my sister-in-law drove us to the hospital. We really are so lucky to have so much wonderful support from the family. Everyone keeps coming together to help us and at least it means that the other two girls can enjoy their holiday. Despite the anxiety - this is one of the most beautiful things that has struck me at this difficult time - I have received so much strength and support. Friends calling up - even acquaintances that I barely know come up tome and offer to help; Talia beautiful toothy smile and warmth attracts people from everywhere. Her drastic small size alongside her adult expression and questioning eyes attact attention from everywhere.
The hospital was really very nice - very well done up and professional looking - quite different from the Spanish equivalent. The hospital was huge and spotless - I know that you should never judge a book by its cover but regardless the efficiency and cleanliness did help me to relax. This alongside my sister-in-laws presence was very soothing.
We were seen quite quickly - my husband and I are used to spending hours at hospitals - he always brings his computer and sets up a mobile office but this time the wait was quite short and we sat chatting to my brother and sister-in -law.
The Dr was very professional. He gave us lots of time and attention. He already knew what to expect as he had studied Talia's results and photo prior to our visit. After a thorough examination and full patient history, he explained that he had expected Talia to lookk more 'syndromey' - she looked better in the flesh than in her photos. apparently her facial muscles seemed more droopy in the photo but here in person she seemed to have better muscle otne in her face. His main concern was her weight - she is way under the charts and is diverging from the norm rather than converging and this troubled him.
He finally looked at us with a frown on his head and a look of concern - he was kind and empathetic and obviously what he wanted to tell us was tough and he did not want to be the bearer of bad news.
Anyway he said that we needed to check her brain development. He was concerned that the 26 week bleed had caused gross damage to the brain and felt the next step needed to be an MRI scan. We discussed this and then he agreed to call us that afternoon with an appointment for early on in the following week.
My husband and i came out in a daze. Thankfully his brother and my sister-in-law were with us. We were strong but I could feel the tears welling in my eyes. One side if me wanted to ball my eyes out and the other side of me just kept saying,'you're fine. Look around you. You are so lucky - you have two beautiful girls and this gorgeous baby - don't give in'. Then I tried a yoga tool called 'Pracktipakshabhavana´ -replacing negative thoughts with positive ones. I thought of numerous cases that I knew of - parents with twins who were both severely handicapped and where the parents couldn't even afford a pram, children dying and living in war zones and I also thought of many kids who do suffer brain damage and still manage to have relatively good standards of living. Deep down I know that we will play with whatever card we are dealt and that we will cope no matter what. Nevertheless it was an emotional day and my heart felt heavy - I had a dull ache in my heart. I looked into my husband's eyes and knew that he felt the same - we are in this together.
Our family were fantastic and I was pleased to get back to my mischievous kids. We stayed with my sister-in-law until after supper - we needed the emotional support that the family were providing for us
Thursday 6 March 2008
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
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
- Do you think this is neurological, a syndrome or metabolic?
- Does she need an MRI? If so what are the pros and cons? Are there any risks?
- Is her TSH abnormally high - could she need treatment for hypothyroidism?
- If she goes on like this weight-wise what can we do? How can we maximise her calorie in-take?
- We have looked at some syndromes, e.g. Prader -Willi, William's - does she look that she could have one of these?
- Could she have a dairy intolerance? Should we be trying other milks - such as Almond?
- We have been using Maxijul - how often should we be using it?
- Should we be giving her vitamins?
- What can we expect in the future?
- Weak muscle tone (hypotonia) especially her hands
- Low intake of liquids - diapers are rarely wet
- Problems taking a bottle but takes breast fine
- Weight issues (failure to thrive) - weight leveled off and actually lost a little over last month
- Born small - 2.320kilos, Height - 45cm, via c-section as she was breech
- Weight gain fine for first 7/8 weeks
- Dribbling when exerts energy (but could also be due to teething)
- Delayed developmental milestones
- Small head but in proportion to overall body
- Suffered reflux - first 3 months
- Choked in August (slightly) - could this have affected her
- Bleed at 26 weeks
- Bad flu and prescribed antibiotics at 32 weeks
- Partial Bed rest from bleed till end of pregnancy
- Intrauterine growth problems in womb after bleed. Baby grew at a much slower rate
- Early Morning - couple of oz (40-60ml) milk
- Cereal with milk or fruit with milk - 125ml (max)
- Lunch - 125ml of veggies or rice with chicken etc, often followed with a pudding (yogurt, fruit etc
- Dinner - 125ml food and sometimes a pudding
- Milk before sleeping - about 60ml
Diary of our time in the UK - Day 1
Day 1 - 20th Feb 2008
The Journey
On our way to the UK. We were all organised this morning - that certainly makes a change. Syaing in yesterday was a good move. It gave me the opportunity to sort through Talia´s paperwork and results at my own pace whilst the girls were at school.
Well,e mum and Dad were fantastic and came with us to the airport to give us a hand. Just really helps to have extra pairs of hands! Now we´re on the plane and so far, so good. Talia is on my lap and fast asleep - I fed her a yogurt on the way up so that hopefully her ears will be ok. She looks so gorgeous! The other two girls have been great (so far!!) They dressed themselves this morning and even managed to do a Kumon before leaving at 8am! Now they are busy pouring over their Nintendo an d eating skittles -a treat for the plane, the onetime their mum lets them have sweets. Andrew is excited to be on holiday and is leafing through his ´PC Answers´- his idea of a light read!
London
We are staying at the Premier Inn in central London and it is fantastic - we have a family room and it is huge. It is clean and very tastefully done up. They have just expanded and refurbished so our room looks brand new - even the cot still has a label on it. This actually is better than a 5 star hotel -so spacious and clean.
Dinner
My niece came over for supper and we had a lovely meal at a nearby Pizza Express. Umm - I love the American Hot Pizza and warm dough balls. It was so lovely to see my niece - she is studying in London, doing a degree in Physiotherapy. We have a large family and it is nice to see people on a one to one basis. We had a great meal and the girls were so excited to see their cousin.
The Journey
On our way to the UK. We were all organised this morning - that certainly makes a change. Syaing in yesterday was a good move. It gave me the opportunity to sort through Talia´s paperwork and results at my own pace whilst the girls were at school.
Well,e mum and Dad were fantastic and came with us to the airport to give us a hand. Just really helps to have extra pairs of hands! Now we´re on the plane and so far, so good. Talia is on my lap and fast asleep - I fed her a yogurt on the way up so that hopefully her ears will be ok. She looks so gorgeous! The other two girls have been great (so far!!) They dressed themselves this morning and even managed to do a Kumon before leaving at 8am! Now they are busy pouring over their Nintendo an d eating skittles -a treat for the plane, the onetime their mum lets them have sweets. Andrew is excited to be on holiday and is leafing through his ´PC Answers´- his idea of a light read!
London
We are staying at the Premier Inn in central London and it is fantastic - we have a family room and it is huge. It is clean and very tastefully done up. They have just expanded and refurbished so our room looks brand new - even the cot still has a label on it. This actually is better than a 5 star hotel -so spacious and clean.
Dinner
My niece came over for supper and we had a lovely meal at a nearby Pizza Express. Umm - I love the American Hot Pizza and warm dough balls. It was so lovely to see my niece - she is studying in London, doing a degree in Physiotherapy. We have a large family and it is nice to see people on a one to one basis. We had a great meal and the girls were so excited to see their cousin.
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