Today I met at school with 12 individuals - some from the Ministry of Health, some from Ministry of Education. Sam has been at school since February and it was time to talk about the transition to school and for the Ministry of Health physio and O.T. to step away and hand over to the Ministry of Ed physio and O.T.
My initial thoughts (as I sat and looked around the table) were:
1. Man Sam keeps a lot of people in work!
2. I don't get why we have to swap over to new people when he has relationships with people that have worked with him for years and know how to motivate and push him.
Then one by one each person introduced themselves, their skill/profession and how long they had worked with Sam. I felt quite emotional as they went around - some worked him him since he was 2 and still in a standing frame unsure if he'd ever walk, Ange explained she was his current Teacher Aide, but had been his TA at kindergarten and carer at home since he was 5 months (I was welling up about now), some haven't worked with him but will be 'picking him up' now that he is under the Education Dept....
I opened with the parents perspective on how Sam has transitioned. I explained how Sam wakes squealing with delight wondering what letter they will do at school today, or that it's library day! I explained that because of the hard work of the people around the table is hasn't felt like a transition - he just woke up one day and ran into school and hasn't looked back. There were discussions on various ways we can help him get physically stronger through specific exercises and how we need to create times of quiet for him, as he is so desperately social but he gets exhausted trying to keep up and not miss out on a thing.
So it was a very special meeting and after school Sam was so excited to tell me they had done the letter F today and then sang the little ditty that goes with it.
Since school started, it hasn't been plain sailing - he has had 3 admissions - 1 for a broken central line (that was kind of crazy/scary and I just didn't write about it!), 2 for urinary tract infections. But with the support of Starship and the community nurses, we are managing to mostly keep him at home and having daily IV antibiotic infusions.
A funny story from his last admission. One of the consultants was asking Sam about school and said, 'What's the best thing about school Sam?'..... Sam answered, 'Thomas' Mum Natalie'. Lots of laughter and then the Dr asked what was she like and Sam answered, 'She's blonde!'. I have since met this lovely lady, and she is indeed very nice and hangs out before and after school and helps out on the playground.
On Saturday Sam had a full eye check up as it was wondered if his lack of concentration is due to vision. Well, his eyes are very good, but he is long sighted and more so than normal for his age/stage. He has trial specs for a month, and he will be watched in class to see if they help him. From my untrained eye (no pun intended) it would appear that most of the boys in his class have severe long sightedness, if lack of concentration is one of the symptoms! Joking aside, we are happy that his whole being is being looked after so well and if specs help, fab! If they don't at least we have tried and we will adapt. I am constantly amazed at the patience and skills the teachers and teacher aides have - I truly admire anyone that sets foot in front of 20 little individuals and seeks to inspire and herd them for 5 hours.... phewf, tired just thinking about it!
Sam currently has a pseudomonas in his left kidney which is proving rather problematic to shift.and is resistant to all oral abx. We await a plan......
BUT, my plan is to get on a plane and escape to Perth, Australia on Friday! My little bro' and his gorgeous wife and boy live there... and I figured it was time I met my nephew who is now one! Francis got back last night from Tanzania and is due to head to Myanmar in a couple of weeks, so he is doing Daddy Day Care so I can escape for 5 days. My plans are just to chill, sleep, eat, read, hang out and repeat......
So it has been a busy term juggling work, hospital and growing girls... but I leave you with photos of Sam hanging out at school - desperately trying to fit in and just be like all the others...... the thing is we all know he's rather special!