Its getting better and better!

So its slowly sinking in-Lyall doesn't have a trachy and that opens up so many possibilities...........!

Today started with a visit from his brilliant and lovely speech therapist who was very excited about the new sounds he is making especially "G" and "C" as apparently they are really hard yet his are perfectly formed.

Then his community nurse came and she was equally happy to see him without his trachy. He was weighed and it was great that despite all he has gone through recently he is still the same weight he was last time she came. She also thinks he's got much taller so clearly he did some growing despite being sedated and ventilated for a week.

Then it was play time..........!

Lyalls friends Aiyana and Thalia came to play and it was just fab. Previously it was hard looking after other kids as someone had to focus on Lyall all the time. Thalia was very attached to Lyalls suction machine and given half the chance would open up the bag and lunge towards him to have a go at suctioning. Shes probably the only person who is disappointed its gone. She was however fascinated by his gastrostomy and after watching him have some water down his tube went off and constructed her own feeding tube construction out of some pieces of marble run!

We then did baking, painting, music, and even had moments of them playing in another room without us watching. Lyall and Thalia were chatting and giggling and when we went to check as things had gone quiet they were playing happily with the contents of the "sticking" drawer which were spread in a beautiful mosaic pattern across the floor! The painting was so lovely as today it didn't matter when they painted each other, even when Thalia did some lovely blue brush strokes across Lyalls neck!

Grandma and Grandad also came to visit and are building up to having Lyall on their own later this week-something that has never been able to happen before!

Then Thalia and Aiyanas parents, Kevin and Ailith came for tea. Ailith is recovering from running the Manchester marathon yesterday for our Leeds Down Syndrome group and raising over £1000-what a star she is!

We finally cracked open the bottle of prosecco they left on our doorstep on the day of Lyalls operation as we have lots and lots and lots to celebrate.

Its the little things that are actually so huge!

Just a quick update but very exciting developments today!

We took Lyall to see his good friend Isla. All the kids were playing upstairs. Previously this would have either meant one of us sitting upstairs with him, the game being relocated downstairs or him staying with us. Today however he played upstairs with no mummies, no suction and no worries! The sounds of his giggling kept drifting down the stairs and we could hear him bossing everyone around!

Then we came home and Max had a friend round. They decided they'd like to take Lyall out for a walk in his pram so after a quick agreement of what route they were going, checking of mobile phones and a run through of "what ifs" off they went. Apparently Lyall giggled lots but then it rained so home they came as the typical teenagers had gone without coats!

Generally calmer waters but still some choppy bits!

Its now just over 3 weeks since Lyalls operation, just over 2 weeks since he was woken up and 11 days since we came home. Its also been a period of time when we've gone through every emotion known to mummies except perhaps the one we would have perhaps anticipated given how successful things have been. We haven't yet felt "euphoric" which may sound a bit strange given how life changing the last few weeks have been.

However in all reality we think that’s probably fairly understandable. Things haven’t been easy since Lyall came home. He was still very dependent on morphine and has been weaning off this for over 2 weeks since he was woken up. This had a dramatic affect on him making him shaky, pale, disorientated, cross, had no appetite, no energy and generally not the Lyall we know and love so well. He really struggled with eating for ages and we had to resort to blending up food and putting it through his gastrostomy just to ensure he was getting some calories. He wasn’t weight bearing on his legs and was just sitting still on the sofa or in his pram. It was all really hard and on Thursday we both admitted to each other that we were getting worried as to whether something had happened.

Over the past 2 days he finally picked up a bit and has finally come off the morphine. He is eating lots more, is interacting more and looks much better. He’s still not walking without holding our hands but you can’t blame him-suspect if any of us had gone through what he’s gone through we’d still be lying in bed demanding 24hr care! Initially we just wanted to take him out and show off our amazing breathing boy but had to slow down and take things at his pace!

We have however noticed some remarkable changes since the operation and every day new things happen. The best thing has to be his giggle. Lyall has always been a happy boy with a big smile but what we’ve realised is that this smile was actually a full blown laugh which comes up from his toes and tumbles out of his beautiful mouth. He’s also started to try and say so many words. They’re not clear yet but he’s having a go and that’s just wonderful-tomato, shop, café, menu, Courtney(girl in fav Something Special episode), no, gone(as in trachy gone!), dvd, custard, apple, tea and lots, lots more. Words he could say before such as friends and family names are much much clearer. Blowing down a recorder is another amazing achievement, maybe by his birthday he might be able to blow out his candles! Bathtime has been so much fun-previously it was all a bit fraught as we tried to avoid getting any water down his trachy, Now he can have deep baths with lots of splashing, tipping out of water from jugs and generally an experience where anyone close by ends up being soaked as well!

Going out anywhere has been so much easier. We just get in the car and go-no suction bag, no emergency bag, just nappies and a change of clothes and we’re off! This morning we popped over to York to get something that wasn’t in stock in Leeds-we had a momentary worry as to whether we should take suction, oxygen etc but didn’t-no trachy means no need for emergency equipment and that’s a change we are going to have to get used to! We even managed to put shopping in the basket under his pram-an impossibility before.

So yes things have changed but no euphoria yet…..! As we said in previous blogs, its been an exhausting and over whelming 5 years since our 20week scan and all of those feelings can't just disappear in a few days. We are shattered but not just from the past few weeks, its like 5 years of tiredness is catching up with us. We had a life with routines set up around Lyalls medical care and are only just realising how much time things took. We seem to have gained an hour in the morning and one in the evening plus time in the day when we used to be suctioning, checking bags before leaving the house, one of us sitting next to him to prevent him pulling the trachy out etc etc. We've also gained shelves and cupboards that were full of supplies and space by his bed that used to have a suction machine and box of catheters. We haven't yet gained sleep as we still wake up to every change in breathing, every wriggle and he has had periods of being very unsettled overnight as he is weaned off the morphine.

But things are good and that is lovely. Everytime we see someone we haven't seen since before the operation it all becomes a bit more real. Peoples responses have just been lovely and we couldn't have got through this without all the support and love we have received from people.

Lyall goes back in to hospital on 17^th to have a review under general anaesthetic. The surgeon will look at his airway through a camera and remove any granulation that has grown and check the graft is healing well. That will be GA number 22 and his third in 10weeks. But hopefully it will be his last for a few months and we can enjoy some settled time before he starts school in September. 

We've got some big plans to try and raise some money for the hospital so watch this space for some exciting news in the next few days.....................!