A Harry update - August 2018

So, I'm not exactly sure if I've done one of these before but I wanted to write a quick post to let you know all about Harry's updates!!

Milestones Harry has hit recently;
By recently I'm talking the last six months or so. Ask any parent, seeing their child hit any milestone is a huge deal, but for me, I feel that Harry has to work slightly harder to hit his milestones and so I feel all the prouder when he does!
Going back six months Harry was barely able to weight bear on his legs and couldn't crawl. He was barely able to sit unaided and couldn't move from laying to a sitting position. He now can sit unaided confidently, pull himself into a sitting position, bum shuffle, crawl (in his own special way) and is just starting to walk! We are beyond proud of him.

Harry has also picked up Makaton like a star! He can communicate exactly what he wants with his favourite signs being 'cake', 'sandwich' and 'Tumble' (Thanks Mr Tumble). He also says words such as 'mama' 'dada' 'harry' 'cake' 'nanny' 'grandad' and his favourite word 'HIYA' but he seems lots more comfortable signing at the minute.

Healthwise Harry is doing fab! He was diagnosed with sleep apnea back in May which we were referred to Addenbrookes hospital for. His ENT consultant (ear, nose and throat) said that although Harry's adenoids are larger than normal he didn't feel that was what was causing the breathing problems and diagnosed Harry with Rhinitis and prescribed a steroid nasal spray which definitely seems to be helping! He still has the odd episode but nothing compared to what it was like before the spray! He also doesn't constantly have a running nose which is AMAZING!

When Harry was born he was diagnosed with a PDA or Patent Ductus Arterisus (hole in his heart) which had been getting smaller. Finally, on our most recent cardio appointment, we found out this has completely closed up!

However, while checking for the PDA Harry's heart doctor noticed something new. An AVSD. This is a hole in the heart that is common in children with Downs but wanting to be sure of what he was seeing and what the best course of action was with it, the doctor referred us to Great Ormand Street Children's Hospital (GOSH) for a second opinion.

GOSH are the best there is when it comes to treating children, and we were happy to be in such great hands, but as a parent, there is nothing scarier than being told your child will be seeing a consultant at GOSH. You only really get referred there when its something serious, so knowing that there was some real concern about this AVSD was honestly a horrible time. Waiting for that appointment has been the longest two months of our life.

Harry has now had his appointment with the amazing consultant from GOSH who looked in depth at Harry's heart and told us that right now, its not causing him issues and is so small he feels he would be doing more damage than good going in to repair it, which honestly was the best thing I've heard all year! We know the likelihood is that Harry will eventually need this hole and leak repair, but doing it when he is bigger means that they can do keyhole surgery rather than open-heart meaning the risk is a lot less! So we are back at six monthly reviews for his heart and now he will be seen by GOSH rather than his old heart doctor but we are thankful for the little successes!

One of the biggest thing happening for Harry right now is his transition into the toddler room at the nursery. Normally children only stay in the baby room until they are two, however, between us and the nursery staff, we decided that when he turned two, Harry just wasn't ready for the transition and so the nursery said that they would keep Harry in baby room for a while longer. So about a month ago, the girls asked us to come in for a meeting where they told us they thought Harry was ready to give moving up a try! He's had a few sessions so far and the plan is to move him up permanently in September!

All in all, Harry is doing pretty brilliantly!! I will try and post one of these updates every 6 months or so, so keep your eyes out for them and all of the other posts in between!!

Where It All Started

Birth Story

Harry's birth story seemed like a fitting first post on here. Bear with me because it was written months ago. More posts to follow ever...