With the Easter School Holidays upon us I have a moment to breath and update.
Last term finished with a super-dooper-fabulously-awesome bang! It was the last morning of school and Sam took a bite from his biscuit (aka cookie). Such an iddy biddy little action that reduced me to tears. His carer rushed over to tell me. The kids were all sitting with their lunch boxes open and eating - Sam just picked up his biscuit and copied them! He had the piece in his mouth and he just sat their frozen for about a minute looking dumb-struck. After a bit, he mumbled to Ange, 'I don't know what to do, can you take it out?'. So Ange fished out the soggy remnants. After school I was asking Sam what it felt like to 'eat'. He said, 'I can't do it, I don't know how'. So I showed him how to chew and moved his jaw about. The next morning the first thing that he said when he woke up was, 'I am NOT going to eat today... hmmpff!', with arms folded across his chest! So although it was not truly eating, it was truly a major step in the life of Sam. We had been told from other families with children learning to eat, that it was the positive peer pressure that inspired them to do it - no amount of specialist feeding programmes or parental encouragement did the trick, it was watching others eat and feeling like they were missing out that made the difference.
So it was a fabulous end to a brilliant Term One of Sam's school career.... and just so you can all share the joy - I even took a pic of his biscuit!
I am working on the idea that although he is nearly 6, when it comes to food he really is a baby, so we are starting to give him pureed apple etc to see if he will start to swallow that.... we are hoping once he figures that out chewing may come next.
The thing is that we don't know if food will actually exit his stomach and into the intestine, which is why his milk feed goes into this Jejunum and not his stomach - even the milk wasn't exiting properly. But if it encourages normal human interaction (and so much of lifes celebrations are done around food), it will be worth it.
With no school, comes free time. Time free from school, but we have had a few hospital appointments, monthly bloods/urine samples etc. Sam has just gotten over another nasty urinary tract infection, which saw him on strong antibiotics again. On Saturday he has an optometrist appointment, Monday a gastroenterology review. We saw Sam's lead paediatrician last week and he has referred Sam to a genetics consultant and also for an ultrasound. There has been some recent research showing positive signs that the gene has been identified for Sam's rare condition, which has implications on knowledge for him and the girls. The ultrasound referral is due to him having quite puffy legs with an increasing amount of varicose veins. This is unusual in a child and could be due to pressure on some veins in the abdomen - hopefully an ultrasound can find the culprit.
But with free time, I've had time to dream..... and with every dream there is an element of impossibility..... so with my rose coloured spectacles and time to dream, I have signed up to do the Auckland Half Marathon again. It's been two years since I last ran half marathons. Last year was a hard year with Sam having around 6 months in Starship and with tiredness my only dream was of sleeping...... even this dream seemed to escape me so cream buns and sugar drinks helped to keep me awake - no surprise I have put on 10kgs. So with new resolve I have decided that I need a goal and I have committed to run and fundraise atleast $2000 for Starship Childrens Hospital. This year two of my sister'n'laws (& anyone else that wants to!) are going to join me and we aim to do the hard yards in order to help raise funds to help the many thousands of kids that find their way to Starship each year. I do not love running, but I know I am healthier when I do and that pushing myself out of my comfort zone is also a good discipline for me. I can always find many reasons not to train, but once I make it public I don't want to let myself down and I want to reach my fundraising goal as I am so grateful for the care Sam has received and want others to benefit.
I have been slack updating the blog - I get tired of my own voice and the dullness of what I have to say (another uti, more abx, few nights in hospital etc...) gets repetitive. Sometimes it's actually quite depressing and upsetting for me to formulate the sentences as I put Sam's life in print.... so I have kept quiet for longer periods to help me cope.... but with my new goal, new training regimen (ahem.... A training regimen) I promise shorter more regular updates, hopefully with humourous antedotes and something that can crack a smile or two for you.
I leave with happy thoughts as last month I escaped to Perth for 4 nights to stay with my brother and his darling family. It was such a great escape - loved every minute of it, neat to hang with my new nephew, discover Perth and the surroundings and hang with my fun family..... ah, it was bliss, most definitely too short, but still worth while.
I leave you with a photo of Francis and Sam hanging out in my absence!