Before we had Quinn, we knew that there was a 50/50 chance of whether she would have my blood disorder because it is hereditary. I had hoped that she wouldn’t have it especially with her leg deficiency because if she was to have any operations or anything it gets a bit complicated and she would have to go to Manchester to be treated/operated on at the Royal Manchester Children’s Hospital. This is due to mine and Quinn’s blood not being able clot, so we must have some sort of treatment to help our levels go to the same as a normal person (I had something called ‘Voncento’ when I had Quinn.)
We had to wait for a letter to come through the post to go to the Children’s hospital and meet with the Haematology doctors. We got this letter and the first appointment was us meeting the consultant which turned out to be the doctor who saved my life when I was little so was a little surreal meeting him so many years later. We met with Dr Will and he spoke a lot about Quinn and confirmed a lot of what I already know as it is the same as my blood disorder. They took some blood off Quinn (she just sat and stared at the doctor and watched the blood come out of her arm, not one cry, whimper or anything it was a shock to us all how well she was with it) they sent it off for testing and said we would get the results when we went back 3 months later. They gave us all the information that if we needed anything, we have open access to this hospital and can call them at any time if we need anything for Quinn. We will have to visit Manchester to see the haematology doctors quite regularly, we went again 3 months later and got the results which we already knew (that she has my blood disorder), they didn’t need to take any blood at the appointment but they were more interested to find out how I deal with things on a daily basis if I struggle with doing anything and who looks after me at the Manchester Infirmary hospital. We are now under a different consultant because Dr Will retired but they all seem nice and they want to see Quinn again in 6months time (they said at this appointment they would like to test Quinn again just to check her levels are remaining the same and double confirm the results again).
We also see a doctor at Manchester for Quinn’s leg and this doctor is one that will work alongside Preston and over see what they are doing (even to this day we are still a bit unsure as to why we see him). The first time we met with him Quinn was only very small I think roughly 3 months old, he had a look at her leg (didn’t say much different to what Dr Jepson had said ) and introduced himself and said he was happy with what Preston had told us and would leave Preston to continue their care and he would see us again in 12months time to see the progress.
When we are taking Quinn to her appointments and things its completely different walking into a hospital with a child that has a limb missing as people don’t really pay much attention as they are too busy with why they are there rather than taking her into a supermarket. At first when we were out, we kept her wrapped up and didn’t really let her leg be on show (even in pictures and things). We noticed that we were doing this and we don’t want to hide it away and when Quinn gets old enough to understand we want her to be proud and not hide away so we shouldn’t be doing this. When we are out shopping you know people are looking and we are very open if anybody wants to talk to us we are very happy to answer questions but one thing I do not like is when you know they are staring and look at Quinn then look at myself and James and kind of turn around because they feel awkward. I know it must be hard for people to not know what to say but we don’t want anybody’s pity we just want people to know if they have any question, even if it feels like it might be rude then just ask us (in person, a message, an email, a phone call) in whatever way you wish we don’t mind and don’t bite (I promise!).
So honestly if you do want to know anything at all please don’t be afraid to ask. We are still wanting to find that one person that has a child in a similar situation to us and Quinn (so if you know someone – please point them in our direction). I would love to talk/meet up with other parents with disabled children and feel like they have no one to talk to.
We would be delighted if you will continue to read my next blog which will be based on Quinn getting her first and second prosthetic leg and how she dealt with them – updates will be on our Instagram. If you have any questions please do post them below, I would love to answer them for you. We love reading any comments, so it would mean a great deal to us if you post in the comments.
Much love from Natasha, James & Quinn