All Night Long!

For the first time ever, Sam slept all night! He didn't once wake screaming in pain, choking or pumps beeping etc... so he slept from 8pm to 5.30 and it was fab! Which meant I slept well (it was my turn in his room) which was a bonus!

Yesterday we had our weekly outpatients appointment where he was assessed. His outputs are all looking good so he has now been increased to 9ml an hour of milk - I was reading back to a blog when he was about 19 days old and we were excited that he was on 1ml of milk every 4 hours! He has really come so very far! He continues to be putting on more weight than he should be considering the small amount of lipids he is on, so they took bloods to do a thyroid test as it could be he is not metabolising as well as he should be. This could also be a reason why he has a 'short stature'. He has always been short for his age and he is not growing as quickly in height as in his girth. This too is a medical problem I share with him.

We have had such a fun week! We are so thankful that Sam seems to have a really good quality of life. He genuinely is so happy and smiley and laidback, unless he is in pain. This week he attended his first birthday party when Francis' younger brother Eddie and his wife Karlene came over to celebrate Eddie's birthday. We have taken Sam to the beach with good friends the Schein family visiting from South Africa, and been a couple of times to pick up the girls after school. When at home we are able to wander around the house with him as he has around 60 foot of oxygen tubing. At one stage I got rather adventurous and put him in the front pack (all 6.7 kgs of him!) and had the oxygen cylinder on my back in a special back pack and went out to get the girls from school. I looked like some strange land-loving scuba diver! It was only about 15 mins in total but it was such a workout!

Sam loves it though and is mesmerised by the stimulation of moving trees etc.... oh I know this is such boring new mums stuff that people bore others with their babies achievements..... but it is so lovely to see him doing normal things like looking around and reaching for things... I just have to share it all.... At dinner we bring him through in a bouncy chair thing and he sits looking at us smiling and gurgling while we eat. It's so cool being the 5 of us in one place. I know it will be even harder when we have to spend time back in hospital....but I'm not thinking about that and just taking time to smell the roses.

This week has been busy trying to sort out support for us at home. The days are full and there just is no extra give should anything happen, like last week when Francis had a family funeral and all our stuff arrived from Laos..... so then Sam comes first and the domestics crash down around us - but we haven't resorted to turning underpants inside out yet! So we finally got funding through for carers to come to support us and had an assessment for some further home help. We realise it is only going to get busier as Samuel gets more mobile and older and determined to rip out all his non-natural appendages! So for now we have arranged for help Mon - Fri for 2 - 3 hours each afternoon, which will be great. We also need time freed up to do physio with Sam as he needs one on one time and have been given exercises to do with him.

We also felt it was important to keep in touch with the girls, as we just haven't been able to, but now can. So I'm just doing an hour a week in each of their classes which is lovely to get to know the kids they talk about and to see their relationships and concerns in school. The girls are smothering Sam with love and kisses and so keen to be with him and remarkably accommodating to the time we need to be with him.

We'll update the blog as and when we have news, but assume 'no news is good news' and we're too busy enjoying our time together to update - or busy scrubbing the bathroom - preferably the former!

X Shirl