We are at 6 and a half months old now and doing so well. It’s the first time we have actually felt like real parents and been able to get on with baby type stuff.
Kyan 6 months old
Kyan had an appointment at the Edwin Lobo Children’s Developmental Centre back in February to check up on a few things. It was our first appointment and we were quite excited about it as we couldn’t wait to see what we could be doing to help Kyan along with his development.
We saw the paediatrician first (our physio was also in on the appointment) and she was pleased with how Kyan was doing. ‘Reflux’ dominated most of the conversation but she was happy with how he looked like he was dealing with it and pleased we are still under the care of Great Ormond Street. She checked him over and said he was doing well, and then passed him on to the physio. She said his legs and trunk muscles were good but his upper body – arms and neck – were weak. We knew this as he still couldn’t life his head at this point.
Tummy time!
Once the paediatrician had finished she was going to see us out when we asked about portage and speech and language (I knew to ask about this thanks to all the reading on the forum I had been doing!). She showed us into a room filled with professionals and lots of other families. We saw the speech and language lady first. She said we had missed the first course but they run 5 a year and she would book us on the next one.
Our gorgeous boy
Next we saw the optician. She explained about eye problems that are associated with babies/children with Down’s Syndrome and so booked us in for two appointments – an assessment and an eye test (she wanted to assess him then and there but he was asleep!). So we don’t have that appointment until next month.
After that we saw the Early Years Support lady. She was lovely and explained that they don’t usually start thinking about support until the baby is 6 months old but seeing as we asked they said they would refer him now. They will be sending someone to our house for early intervention and portage and then help us find a nursery (if that’s what we decide to do) or child minder and even help us with getting him into a school and making sure support is in place before he starts. We couldn’t believe it!
Kyan's first trip on the train
So, a couple of weeks later we got our letter from the paediatrician – who stated that Kyan was a ‘delightful baby’ (proud mummies!) – and were pleased with her findings. Interestingly at the time the letter came, Kyan was holding his head up and sitting quite nicely (supported of course!). So that made us feel even more positive about what we were doing with him – as the letter stated he could not lift his head. Amazing how quickly
they can change and develop! Within 2 weeks he was already doing some if the things the letter said he couldn’t. We can’t wait for our next appointment to show offour gorgeous son!
Future lifeguard!
Last week we had our next appointment at GOSH (Great Ormond Street Hospital). Poor Kyan had to be put under AGAIN (that makes 4 times already!). But as always he was very good. Entertaining him all day while he couldn’t eat was a nightmare, but he did well. Entertaining him after the procedure while he still couldn’t eat was even worse, but we got through it! (The slowest hour of our life!) We were in ENT (Ears Nose Throat) this time and the procedure he had was a camera down his throat to check his airways. We found out later that day that Kyan’s airways, just below his larynx, are 53% closed. They said this was small even for a baby with Down’s Syndrome but should get bigger as he gets bigger. This explains why we have had so much trouble with his reflux!!! The doctor didn’t seem too worried about it and said that we were just to keep an eye on him – make sure his breathing doesn’t get noisy or he doesn’t lose any weight. So although we still don’t have a cure for his reflux – at least we don’t feel like we are overreacting when he has his attacks!
Speaking of reflux, it has appeared to have settled a lot… for now anyway. We think this is due to weaning and him growing in length. Lots of professionals told us that weaning would help and we believe it has! Kyan is really enjoying his puree food. He has porridge every morning now, as well as some lunch and dinner (and still having plenty of milk too!). We are yet to find something this boy doesn’t like!
Kyan dressed to celebrate St Patrick's Day
In fact, his reflux has been so good lately that Lauren, Kyan and I actually went out for dinner on Thursday night. That’s right – we left the house and ventured all the way to Pizza Hut! It was the first time we have been able to do that – and we survived!! We are finally at the point where we are comfortable (well Lauren more so than me!) to go out in public and not worry so much. Lauren and I even got to have a decent conversation without worrying about Kyan refluxing and not breathing properly (of course we only really talked about him!). Next week we are stepping it up a notch and attempting a birthday party! Fingers crossed that goes well…