We had our first specialist appointment today.
We’re in the middle of a staycation and took a short break from our family time frolics to see a lovely professor and her team at a hospital in Manchester to talk about my right and man and his arm. As you can see from the cover photo it has been glorious weather, which always makes any day that is waiting room heavy all the more enjoyable.
We didn’t quite know what to expect, or how long we would be there for, so we over prepared…or at least I thought we had, Jon accidentally forgot the emergency lunch so we ended up sampling the ‘delights’ of the hospital canteen!
Yet again I was amazed by how brilliant children’s department waiting rooms are, this one had a fantastic outdoor area too so our daughter could have some fun running around out there in between each appointment. Adult waiting rooms need to step up!
We had an initial appointment in which we all introduced ourselves, they asked a few questions about when we found out about his hand and general pregnancy questions. My right hand man just smiled away at everyone and I’ve never seen someone so happy to be half naked than when it was time to take his T-shirt off so they could have a look at his muscles!! After this they sent us off for an x-ray so they could take a look at what was and wasn’t there. I’ve mentioned before it seems like there is something beyond his wrist.
This is when we were glad of our ‘in the hospital’ entertainment bag as this was very much needed at this point. My right hand man did not like this part of the day. I stayed in the waiting area with our daughter and we could hear him crying from there! My daughter turned round to me at one point and said “Mummy I don’t think he likes his x-ray very much.” No…not even a little bit.
After this we were sent back down to the children’s department and waited around for the appointment to discuss what the x-rays showed. At the moment they can only see bones up to his wrist, everything perfectly formed. As we can physically see that there is more after that, the fact they didn’t show up on the scan would indicate those bones haven’t fully developed/hardened yet. Apparently as Jon and myself are in a very good place emotionally about it all and my right hand man is doing so well we don’t need to see this particular doctor for another two years. In the mean time we’re going to be referred to our local limb centre for all occupational therapy and any physio needs etc, as well as going to see a geneticist.
The term ‘symbrachydactyly’ has come up before around his hand, we asked her if this is what it was and she said at this stage she would say no, she would call it ‘transverse absence’. Always nice to put a name to it!
So we’re happy, everyone there seemed really nice, they wanted to make sure that we knew he would be absolutely fine in life. We had an amusing conversation in which she explained he will be able to do what ever he wants in life, except maybe be a concert pianist, I explained that actually there is a guy who has one hand and that is his profession. She then declared that she no longer has an example of careers people with one hand can’t have! We are looking forward to where this journey takes us, and in the mean time we just continue living life with no limits and embracing ability in all its wonder.