This wee video compilation popped up in my facebook memories along with this text: "Elis had one of his regular check ups with paediatrics today, we met with a doctor we haven't worked with before.
DR: "Wow well he shouldn't be able to do that!"
Welcome to the household catch phrase, doc! This kid won't be told he "can't" do anything 🙈 - can't believe he'll be turning 1 in 2 months 😠(still can't sit though bless him, much to his frustration)."
And a year later we have been told that we are being discharged from the paediatric team at the children's hospital and getting transferred over to our local community paediatric team as Elis is doing so well and has no serious health concerns. The community paediatricians are the ones we need to communicate with when it comes to getting occupational therapists to adapt nursery and school environments to suit his needs so we'd need to be in their care eventually anyway. But it is a massive relief to get there already and know that he for the time being doesn't need to be monitored as much as he has been. Up until now we've met the paediatricians about every 3 months since his birth to monitor how he's growing and developing. They've kept an extra close eye on his head circumference as excessive growth is an early indicator of hydrocephalus (water on the brain) which is life threatening and common in those with achondroplasia. They've plotted his growth on his own grow charts as there is no point in him using the same charts as average height kids. Here are his graphs to give you an idea of how someone with achon grows, if he continues on his current curve he is predicted to be about 130cm long as an adult which is the average height for males with achondroplasia. Girls have different growth charts so mind to not compare how someone from the opposite sex grows. While height can be somewhat predicted through monitoring it is not possible to tell what the length in arms and legs will be as it is very individual from one person to another.
The paediatricians have also liaised with our other teams like his physiotherapist and the orthopaedic surgeon (he was discharged from them both a few months ago thankfully) as well as the audiology team. He has an appointment with his audiologist next week to see what is happening with his glue ear and if his hearing has continued to worsen or if it has improved since the last visit. As he isn't speaking yet we are keen to find out if his hearing could be a contributing factor, and if so what steps we can take next. We have also been referred to a speech therapist so hoping to hear back from them soon, I'll update on all of this as and when we find out more though. Our eldest had selective mutism when she was younger and couldn't speak to anyone other than me and my husband until she turned 4. She only really started to speak closer to 2.5 year's age so we are not unduly worried about Elis just yet. But we are of course keen to find out if there is something making it trickier for him to learn to speak. Their other sister, in contrast, was a chatterbox from an early age with a wide vocabulary before her second birthday.
We were also a pulse oximetry machine to take home and do a home sleep study. Because his last one went well and we haven't had any concerns he's not needed one since last year but it's still important to monitor his sleep. You can find out a bit more about how it works by clicking here to get to my post from our last sleep study. We ended up doing the study over two nights as the first night Elis managed to unplug one of the wires somehow. The second night went much better though so hopefully they are happy with the data collected. We should find out more the next time we meet his paediatrician, that is, unless there is cause for concern in which case we'll be called in sooner to discuss our options.
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| I always make sure to put him in pyjamas with socks attached to stop him pulling off the probe from his toe. |
This is not the journey I pictured when I was pregnant, especially not once we had his diagnosis. It has gone a million times better than I ever thought which just goes to show you can't worry too much about what might happen in the future because you simply don't know. You just have to take each challenge as it comes, and Elis shows us in abundance that anything is possible. I am sure we will always have hurdles to overcome, but I also know he is capable is so much more than I ever could have dreamed of. Next step is tackling his hearing and speech, but in the meantime I am ever grateful for his continued good health and progress.
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