Nate's Journey: Physio does NOT always equal fun!

Propping on ones arms, and looking at his plethora of toys, is unfortunately NOT what Nate calls fun! At times you have to harden your heart, grow thick skin, and just keep pushing him through it :-(

Mummy I've had enough for now!

It's just SO much easier for him not to do it - which is precisely why of course that he must do it - to build his muscle strength, so that he can try to offset his weak tone as much as is feasibly possible. We use all manner of tricks to try simultaneously distract him and help him - from the TV, another person/face to look at, a noisy toy, his music box, a book, moving toys, and so on - sometimes that works, and sometimes it doesn't. But we pull out all stops trying :-).

By comparison, a typical baby might do tummy time 2-3 times a day, and would develop in strength quickly. I read somewhere that a 7month old typical baby should be able to lie on prone for 15minutes at a time (general rule is of twice its age, plus one minute). Generally they can also roll and sit by around about this age.

Nate does physio at least 3 times a day, but is unable to lie on prone (either unsupported or supported) for a full 15minutes even once in a day. He is also still unable to roll, or to sit unsupported. Physically though, he is on the 50th percentile of 'typical' babies for his height at 68cm, and is now tracking just above the 25% percentile for his weight (7.64kg as at 34weeks or 28weeks adjusted, taken on the 6th November).

When comparing Nate to other T9Ms around the world, he is neither ahead nor behind what others seem to have experienced developmentally at this age - inspite of their differing levels of Mosaicism, the T9Ms generally seem pretty consistent at this early age. I don't find that overly comforting, as you always hope you have the exception!!

As I have mentioned before, the impact of the hypotonia (or low muscle tone), will be a delay in his ability to hit his early milestones. This then has the ongoing impact of delaying the later milestones. For example you usually can't walk, until you can roll, sit, crawl, and pull to standing. The delay in these gross motor and fine motor milestones, then results in a delay in cognitive development, which is due to the lack of discovery and engaging with the world around them through active movement. The 'developmental gap' between a typical and a trisomy child, generally then widens further over time.

So you can see why early intervention is a MASSIVE focus. The goal being just to limit the developmental gap. We try to do all that we can around this - currently that consists of sessions with the CDT physio, private physio, conductive education, and the early smiles programme. However the bulk of the hard work is the at-home physio that goes on around these sessions - which has to be driven by Robin and I, Nanny Sylvie, and Granny & Grandaddy. The repetitive three times a day of 25-35minutes - minimum - is an absolute MUST.

However in reality, it is unlikely that everything that we are doing will be enough to stop ALL of the possible developmental impacts for Nate. Of the 100 odd T9Ms in the world, there are only one or two 4-5year olds who are currently within the realms of 'normal' or 'typical' for their age. But they are still proof that early intervention, a committed focus (combined with potentially less trisomy cells within key organs like their brains!), is worth its weight in gold.

We hope that if we continue to throw everything we have at it, that it might be enough to stem the tide of at least some of the developmental delay. Convincing Nate of that, and maintaining that focus day-in day-out, will be our challenge!

Anyway here are some shots of our little man in action over the past week......x