I couldn't resist posting this, Noah was at the creche on Friday and for fun his physio put him on a bike .... well he is Dutch after all!
Saturday, September 25, 2010
Sunday, September 12, 2010
Good News!
It's been a very lovely weekend after a very stressful week. Noah's stent change operations was going to be delayed by 2 weeks, so I had to do a lot of calling and pleading to ensure it went ahead as planned this week. We were fortunate enough to be told we could go on Wednesday, but the operating theatre was busy and so we couldn't get slotted in, so we were asked to come back on Thursday. By Thursday evening at 18:00 I was loosing hope, but by 18:45 Noah went down to surgery.
Noah had been keeping himself entertained with DVD's and his books. I love this photo because it shows how much his fingers are improving, he's turning his own pages here.
Dr Hoeve practically bounced into ICK1 to give us the good news that Noah's throat is healing which means that he will probably only need 2 more stent changes. WOW!!!!
Our ICK1 nurse said "congratulations, what next?" errrrmmmm.... we looked at each other in confusion ... we're so far into Noah's future, we don't have any plans for "what next". I think I will be busy next week talking Noah's team and begin planning for what comes next!
This is so huge, we still can't get our heads around it. Another 6 weeks, then it will potentially be another phase in our lives. I think Thijs summed it up best when he said, "I can't wait to see what Noah does next ..", our amazing boy just keeps surprising us.
We wanted to do something nice this weekend as a family and so we took the bikes out and enjoyed a trip around the area. It was a lovely day Noah was very tired by the time we got home, but I'm glad we got some fresh air.
I still get blown away by the pretty scenery where we live. I love living here :)
Some of Noah's therapists stopped by last week to see Noah at home but also to see if they could help improve his environment. One of the greatest things they brought was a walker chair, Noah is able to sit and still be able to move. This allows him great freedom without costing him too much energy. He loves it.
Our new target is to get Noah to communicate with us, for him to understand that he can have an impact on his environment and effect what goes on around him. A baby learns that when baby cries - someone comes, baby cries - activity is changed, baby cries - food or bum change, it doesn't take long for baby to realise crying is a way to impact it's environment. You can see how Noah didn't learn this and if you couple this with his physical problems where he couldn't move around either, it's a challenge to open up his mind and realise all the possibilities. Of course Noah's team are up for the challenge! Here is a great video of Noah moving around and enjoying cause and effect ... "I press a button and something happens!"
Noah only learned to press a button for himself this morning .... but he enjoyed pressing the buttons for 90 mins straight - It's lucky we love him!!! We're very proud of him :)
Noah is teething a lot still. There are plans in progress to try and get him to see a specialist dentist because he has all his teeth, but they keep on coming! Having a feeding tube in his nose for so long plus teething so quickly and now add the stent in his throat, trying anything with Noah's mouth is just a "no! no!".
He doesn't put anything apart from his 'doekie' or his hand in his mouth, so it's been impossible to get him to try and eat or accept something like a teething ring.
I got told off about his lack of mouth hygine so Noah has had to learn to accept cleaning his teeth twice a day. It was hard work, but he even manages to laugh now so huge progress. So imagine my surprise when he accepted some food earlier this week! Of course most of it went over his clothes, the floor and me ... but he was still smiling so I call that progress!!
One of the coolest things happened today. Noah is always a very happy child, he smiles a lot and is hardly ever grumpy. I've only really seen him get excited but never laugh, until today. Noah is usually a bit curious about Lilo, but mostly Lilo and Noah tend to ignore each other. That all changed today when she was playing with her squeeky chicken toy ....
.... he laughed so hard, how our hearts didn't burst with joy I'll never know.
xx The Drostens
Noah had been keeping himself entertained with DVD's and his books. I love this photo because it shows how much his fingers are improving, he's turning his own pages here.
Dr Hoeve practically bounced into ICK1 to give us the good news that Noah's throat is healing which means that he will probably only need 2 more stent changes. WOW!!!!
Our ICK1 nurse said "congratulations, what next?" errrrmmmm.... we looked at each other in confusion ... we're so far into Noah's future, we don't have any plans for "what next". I think I will be busy next week talking Noah's team and begin planning for what comes next!
This is so huge, we still can't get our heads around it. Another 6 weeks, then it will potentially be another phase in our lives. I think Thijs summed it up best when he said, "I can't wait to see what Noah does next ..", our amazing boy just keeps surprising us.
We wanted to do something nice this weekend as a family and so we took the bikes out and enjoyed a trip around the area. It was a lovely day Noah was very tired by the time we got home, but I'm glad we got some fresh air.
I still get blown away by the pretty scenery where we live. I love living here :)
Some of Noah's therapists stopped by last week to see Noah at home but also to see if they could help improve his environment. One of the greatest things they brought was a walker chair, Noah is able to sit and still be able to move. This allows him great freedom without costing him too much energy. He loves it.
Our new target is to get Noah to communicate with us, for him to understand that he can have an impact on his environment and effect what goes on around him. A baby learns that when baby cries - someone comes, baby cries - activity is changed, baby cries - food or bum change, it doesn't take long for baby to realise crying is a way to impact it's environment. You can see how Noah didn't learn this and if you couple this with his physical problems where he couldn't move around either, it's a challenge to open up his mind and realise all the possibilities. Of course Noah's team are up for the challenge! Here is a great video of Noah moving around and enjoying cause and effect ... "I press a button and something happens!"
Noah only learned to press a button for himself this morning .... but he enjoyed pressing the buttons for 90 mins straight - It's lucky we love him!!! We're very proud of him :)
Noah is teething a lot still. There are plans in progress to try and get him to see a specialist dentist because he has all his teeth, but they keep on coming! Having a feeding tube in his nose for so long plus teething so quickly and now add the stent in his throat, trying anything with Noah's mouth is just a "no! no!".
He doesn't put anything apart from his 'doekie' or his hand in his mouth, so it's been impossible to get him to try and eat or accept something like a teething ring.
I got told off about his lack of mouth hygine so Noah has had to learn to accept cleaning his teeth twice a day. It was hard work, but he even manages to laugh now so huge progress. So imagine my surprise when he accepted some food earlier this week! Of course most of it went over his clothes, the floor and me ... but he was still smiling so I call that progress!!
One of the coolest things happened today. Noah is always a very happy child, he smiles a lot and is hardly ever grumpy. I've only really seen him get excited but never laugh, until today. Noah is usually a bit curious about Lilo, but mostly Lilo and Noah tend to ignore each other. That all changed today when she was playing with her squeeky chicken toy ........ he laughed so hard, how our hearts didn't burst with joy I'll never know.
xx The Drostens
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