Nate's Journey: September 2015

Hello everyone, sorry we've been M.I.A for the last little while! It's been a busy time!

In terms of quick news, Robin and I had the chance for a quick trip to the States over late July / early August. We flew into LA, headed down to San Diego spending time in La Jolla and San Diego itself, then across to Las Vegas where we had five days staying at The Venetian Hotel and caught a couple of shows (Jersey Boys at Paris Paris, and Le Reve at Wynns) back to San Diego and a few nights in the beach spots of Del Mar and Coronado, and then up to LA and to Santa Clarita where we got to spend a night with my brother Craig, and his wife Kate, and kids Grace, Alice, and baby Patrick, in their lovely new home.

Hanging in Beverly Hills

It was just fantastic for us to be able to get a break away from all of life's challenges, and to get some quality time together, some sleep, a lovely warm (slight under-statement) climate, and to see some sights and family. All sans child!! What luxury!

Nate was hanging out with Granny and Grandaddy back at home (translation, spoilt!) over this time, and had Aunty Helen coming to play as usual. We talked to him everyday on Skype and everyone coped really really well. Massive thanks to my folks....an awesome experience. We'll pop a few more of the holiday snaps on the next post for those interested.

Nate has had an eventful time this winter, while thankfully managing to not get sick while we were away, he was quite unwell just before that, where he was referred by his GP to Starship A&E. Thankfully they let us take him home from there on antibiotics and ventilin, instead of admitting us to Starship. Since we have been home from our trip, he has been sick twice more in the space of about four weeks, and on antibiotics and ventilin both times, and with one other Starship A&E visit. Probably from being in daycare....but that in itself is a bit of a catch twenty-two...we could keep him home and he likely wouldn't get so sick or so often, but of course his development would pay the price (and he needs all the help he can with that). You'll have all seen our last post showing how much fun he has at his daycare, which shows why we choose to keep him there inspite of the bugs. Here are a few more shots of the little man in action there - it's amazing how much he blossoms with all the other kiddos around him and such amazing teachers.....check out the below and his fondness for balls of all sizes....

Cheeky man!

Throwing his ball down the slopes!

I'm a total star!

And here he is fostering his love of the ukulele with Jade. We hope in time to be able to manage music classes for him, because he shows such an interest and it obviously makes him super happy.....:-)

So you see what we mean.....such a great experience for him! We love getting the updates from his teachers, they clearly dote on him. And he also gets lots of quality time with Helen to the library, the local park, to see the ducks, and out for walks. A toddler's life! He is a lucky little man! Here he is at home finessing his strumming.....

Still it is a real worry for all of us when he gets sick, he struggles to cough up the flem/mucous because of his hypotonia (poor muscle tone) so a virus often becomes bacterial fast. His breathing always worsens and we end up on ventilin. He is now on a daily flixotide preventer, and I'm guessing we'll have an official asthma diagnosis in time (last time his Respiratory Doctor said he was too young to diagnose). He is still on his Airvo machine at night, although we can't use it when he gets ill so he hasn't had it much at all over the last month and a half.

In other news...Nate also had another hearing test recently, which suggests his hearing is now worse than last time in his right ear. However because he wasn't very cooperative, this isn't definitive and we have another test to come. Hopefully he plays ball for that one, so that if he needs a stronger hearing aid, we can get it ordered. Nate also had his brain MRI which in one way was good, in that it ruled out hydrocephalus (we were worried about that due to how quickly his head has been growing), but in other ways, it really wasn't so good. It basically indicated that he has LESS white matter than the last time he had a brain MRI (which was around 15 weeks or so), and they don't really know why at this point (or that's what they are telling us at this point). They said we would repeat it later this year, and we're hoping that with this next one, that this isn't a trend in the making. We don't really know what this would mean for Nate, but it wouldn't be good and in fact could be quite dire. Hoping for otherwise. Obviously.

In terms of what is coming up, we have another sleep study due (a pain to go through, as it's an overnighter and with lots or wires and monitors attached to him......in fact getting those on him as a 2.5y old, will be a TOTAL nightmare), as well as another appointment with his Developmental Paediatrician. I'll be asking what further support we can get around speech and also some behavioural challenges we have with Nate (due to communication and understanding challenges), but I'm guessing that there won't be much, at least not that is funded anyway. I know there are so many people/families that are worse off than us, so I try not to moan about it, but when you are faced with the bills we are around all of Nate's therapy needs, you honestly realise why so many special needs families end up divorced. The pressure on all fronts can be immense.

But of course we are so super blessed to have our little man, and we remember that every day. I see families losing their special kids almost daily on the Facebook groups I belong to, and I am so thankful to be one of the lucky ones who have their BooBoos with them. Every day he delights us with his little Nate-star'isms.....like when he helped himself to a chippie from the bowl, and I said take one to Granny, and he shook his head and shoved it as fast as he could in his mouth (there maybe communication challenges, but he understands anything about chippies!)....or when he was at daycare when he helped himself to his friends piece of birthday cake after he had finished his own.....or when you ask him for a kiss and he gives you his face up close for you to kiss him....or when Robin gets home at night and he runs down the corridor madly signing 'shoes' as he loves to help Daddy take his shoes off.....or when that little tongue of his comes out and you know mischief is about to begin! We just ADORE our little man, he really is just so special and so loved by everyone who knows him. A delightfully, cheeky, mischievous and loving little man :-)