Howdy all our lovely new likers ♡ An update from the last week. It was one of the most hectic weeks we have all had in a very long time we had 15 appointments in 4 days all up 750km of driving and bugger all sleep for me. Has been a long week of really rough nights for karter. We started off with a meet and greet with our new ambulatory care coordination team then a speech therapy dietetics review and feeding session( EPIC FAIL) Then physio where we discussed a future plan for karts concerning afos (ankle foot orthosis) and theratogs. We are back to the same weight bearing exercises we were doing from just a few weeks old due to the increased tone in his lower limbs and discussed at length the long term ramifications of such serious toe walking we are looking into a weighted blanket to see if that may also help with his tremors and leg jerks and full body startle episodes at night time. Then we had a few drs appts and another speech therapy session. This week we started karters instensive 5 week block of speech he did SO SOOOOOO WELL although it really brought home just how significantly delayed he is. Hes at about a 10month old level and is really struggling. So we discussed long term options which was a little difficult and fairly emotional. We then finally had his general pead review. And THANKFULLY shes agreed that acc team is best to coordinate our appts and things and that unless we need her shes happy to let us have extended periods between reviews but that shes more than happy to see us whenever if we need it. So thats one less appt we will have to worry about. Next week we have our first fitting for karts new wheels at the independent living center with our AMAZING o.t maria and may be looking at a bath seat to avoid another catastrophy like earlier this week (neck jerk in the bath=massive egg on his head) which was a tad scary. But thankfully this VERY long week is over. We got LOADS of visits with the gorgeous levi and his mummy and even squeezed in a little lunch date with them yesterday too :) thanks everyone for checking in on us throughout the week. And a HUGE thankyou to sarah for coming over today and being the most incredible help ♡we love you very much. Have an AMAZING weekend :)
Posted on: Sat, 16 Aug 2014 10:04:23 +0000
Trending Topics
Recently Viewed Topics
© 2015