Friday, 31 January 2014

Little Shadow

Loving the playground
I am just totally in love with our little man today. I mean, I always love him, but some days I just stare at him and think I must have done something right to be given such a beautiful gift. He hasn't even been particularly adorable today; he's been a bit naughty and grumpy, but I'm just in awe of him!

Felix has become my little shadow recently. He likes to watch what I am doing and then copy me, which is great fun! He's showing so much interest, that I am making an effort to include him in as many things as I can. Tonight, I was going to be slicing mushrooms for dinner so, before I started, I got a butter knife out for Felix and brought a stool in to the kitchen so he could help me. Straight away, he climbed from the stool up onto the bench, rather than sit on it (he obviously had different ideas to me). He watched me carefully as I started slicing the mushrooms, and then started cutting his own. It took him a little while to work out how to hold the knife so it worked effectively for him, but by the end he had managed to slice up his mushroom into little pieces. He was concentrating so hard, and looked really pleased at the end result! He did a great job.

He has become a lot more aware of what he is/isn't allowed to touch in the kitchen, and we have actually taken the baby gate down because he has been doing so well. If he sees me put the kettle on, or if he goes near the oven, he says (and signs) "hot (ot)". He hangs the teatowels on the oven door, and puts his rubbish in the bin. I have shown him which drawer he is allowed to play in; it has wooden spoons, plastic utensils etc inside. If he tries to open any of the others, or opens the cupboards, I ask him nicely to close them, and 9 times out of 10, he shuts them straight away. Gone are the days of having a little whirlwind in the kitchen, pulling out everything out in sight.
So much concentration

Felix has always loved music and, over the past couple of years, has learnt to do some actions to songs, through repetition. We have always done 'twinkle, twinkle, little star' and similar nursery rhymes, plus some Wiggles songs etc. By seeing them over and over again, he has been able to do them quite well. However, I remember wondering, months ago, when Felix would spontaneously copy actions he saw on kids shows on TV without having to watch them many times.... my guess was 6 or 7 years old. usual, Felix is throwing all of my preconceptions out of the window. Over the last couple of weeks, he is like a little mirror. If there are actions to a song on Play School or Yo Gabba Gabba, he copies them with great enthusiasm. He is a delight to watch, and we often catch ourselves just staring at him with HUGE grins on our faces.
Those eyes....

Our little man is becoming more and more stubborn and independent, which we're actually really happy about. It means that he is showing his determination to learn to do things for himself, without our help. Although his speech is still developing, he makes it very clear to us if he wants to do something himself, usually by pushing us away. The funniest thing is when he wants us to listen to him... he SHOUTS! He doesn't say a polite "Mum", he yells "MUM, MUM", usually if he is doing something he wants us to watch. His big eyes get wider and wider, and then we're rewarded with his huge grin when we stop what we're doing to watch him. The most exciting thing Felix has done this week is completely eat two of his dinner time meals with a spoon or fork all by himself. It has taken him a really long time to get his coordination right, and to get the spoon to his mouth without the food falling off, but he has made so much progress. We're so proud of him!

That smile still melts me
In the past couple of days, we have started Felix on a gluten free diet and will be keeping his lactose intake to a minimum. We have been trying for some time, to get his bowel issues sorted out. He has had the big ones' like Coeliacs and Hirschprungs ruled out, but there is definitely something that upsets his digestive system. Using probiotics in his food has improved it slightly, but now we're going to investigate things in his diet, starting with gluten. We already know that too much lactose makes him vomit, but he seems to be able to cope with a small amount. It doesn't mean a huge change for Felix as he eats predominantly rice/corn products anyway, but we're hoping to see an improvement. Felix loves eating, so as long as he's still getting food, he's not going to care too much what it is!

The new school term has just begun, which means my frantic schedule of appointments and therapies with Felix is about to begin again. I'm looking forward to watching Felix's development over the next couple of months, and I'm sure we'll have lots of fun along the way!

Thursday, 9 January 2014

A Belated Christmas Update

Santa Number 1 (same photo as my last blog)
The best news I have to share in this blog, is the results of Felix's last MRI scan. I am very pleased to report that the size of his ventricles hasn't changed since his last scan almost two years ago. He still has Ventriculomegaly, but it is stable which is wonderful news. The Neurosurgeon is confident that Felix won't require any more MRI scans. Obviously we have to look for any signs of regression, head circumference increase or lack of development, but we are all pretty sure that everything is going to be fine from now on!

Felix was kept busy over the Christmas period, with lots of parties and three visits to Santa. Our local playgroup visited the 'Magic Cave' at one of the towns near where we live. The cave is located down some stairs and is basically a couple of rooms filled with Christmas ornaments, decorations and, of course, the bearded man himself. Felix was onto it straight away and flatly refused to walk down the stairs. I'm sure he can smell Santa a mile away. Nathan and I managed to wrangle Felix as close to Santa as we could, but there was no way he was going to sit on his lap!
Santa Number 2

Santa number two is a friend of ours. After seeing the very unenthusiastic photos with Santa number one, he vowed to make every effort for Felix's next visit with Santa to be a happier one. The second Santa experience was at the Down syndrome early intervention party. There was a crowd of beautiful little faces there that day and a lot of noise and excitement. After some singing and playing, Santa came in dancing to the music. Felix clung onto me a little bit tighter, but relaxed when Santa came over to give him a 'high five'. After several more 'high fives' and after watching the other kids go up and receive their gift from Santa, it was Felix's turn. He actually sat on his knee... only very briefly, but he sat there!! I was amazed! Thanks for all your hard work Santa! ;)

A few days before Christmas our little town had a Christmas party for all the locals. It was pouring with rain but quite warm, so Felix was enjoying running around and playing. Santa number three arrived on an SES (State Emergency Service) truck. Felix saw him from a distance and didn't seem to be worried at all. He was more interested in playing on the playground. Once Santa had sat down I carried Felix over to him to see what his reaction would be. He seemed to be quite comfortable, so I sat him on Santa's lap. For the very first time he sat, unbothered, and I was even able to walk away to take a few photos! OK... so he was far from giving me a huge cheshire cat grin, but it was the closest we were going to get for 2013! There is always next year!
Santa Number 4

The days leading up to Christmas brought with them an awful 'flu to our house. Felix and I were struck down pretty hard, with Felix coming close to needing some IV fluids due to dehydration. I spent my days in a fog, trying to prepare for Christmas day and the extra 8 people we had coming to stay. I'm not exactly sure how, but everything got done and we were able to enjoy a very relaxed Christmas day with our sons, their partners and our Grandaughter (one of our boys has a girlfriend who has a little girl. I enjoyed fussing over a 'pink' baby after all our 'blue' ones. She's a lovely addition to our family). I'm so thankful for our kids. They all pitched in and helped, and Felix was in his element having all of his brothers at home. He looked a bit lost when they all left again after Christmas.

Enjoying his new dress ups on
Christmas day!
I hope you have all had a good start to the new year. Ours has been a little bit shaky, with illness and a few other little bumps in the road, but I'm trying to stay positive. I'm currently enjoying having a break from therapies and appointments due to the school holidays, and working up some energy before it all starts again. There's a lot we are able to do with Felix at home to encourage his development through play, so there is always plenty to keep us busy even without his structured therapy. He has been counting anything and everything lately. Even though his speech is still developing, we can definitely hear a "four, five, six" quite often, which is so encouraging. My goal for the next few months is to start working more on colour recognition too.

Happy new year to you all. I apologise that the frequency of my posts has dropped off significantly this past six months. I will try to get back to more regular blogs over the coming weeks!