This week, we had a few appointments and it made me realise how although we are undiagnosed and that is extremely emotionally draining we have it a lot better then some in similar situations.
We went to our local hospital who just advised that we see GOSH so much, there is no point going to see them for 7 months. Our next appointment is more for a catch up and to keep us on the local hospital’s books. Our open access letter has changed slightly and we are awaiting this to come through but other than that there was nothing they could do.
Our health visitor came round the following day. We were talking about my biggest anxieties, what stresses me out about having an undiagnosed child. I said with all honesty although I worry about BBG, my daily anxiety over her gets put aside due to the time it takes to care for her but also because of MO and his needs. Even when he is at school a lot of our day revolves around his needs and it just leaves us with hardly anytime to really sit and be anxious unless we are thinking or talking about it all.
However, I am extremely anxious the day before a hospital appointment for 2 reasons
1- They will say there is nothing wrong with BBG and discharge us with a child that we know is not well
2- They will give us an answer to everything in an appointment we think is just a quick check up not an answer giving appointment.
Thankfully our Health Visitor said that we really do not have to worry about being discharged but for the first time ever did mention that her fear is that we will get an unexpected diagnosis.
She knows what family of conditions they are looking for is, and she knows what BBG’s symptoms are. She also mentioned we are seen a lot in GOSH for an outpatient. That some families take a year just to be referred and be seen, whereas we are seen every 6-8 weeks by 3 different departments. That by the time she was 6 months she was already booked in for a day of extensive testing that generally takes months to organise. That since those tests showing negative results, GOSH is still really keeping us busy with more tests and appointments.
She turned to me blankly and for the first time ever uttered the phrase she has never even hinted at before, ‘we need to start preparing you mentally for when you hear shortened life expectancy’, before when I have even hinted at this phrase she has said not to worry, that we will get there if we get there, and yet this week she read a report and uttered that phrase. A report that I read 100x beforehand and saw nothing jumping out of the page. Then thinking of it, I wonder if she is reading between the lines, she is extremely experienced and specialises in complex disabilities. She may know why GOSH are being so on top of BBG and her development, she may know a reason why they haven’t made us sit and wait for months to get seen.
All of these points have made me realise that I am so grateful that we are seen by GOSH. I am so grateful that our local hospital referred us onto GOSH by the second appointment, knowing that BBG was complicated. I am grateful that I am not still under my local hospital, I am grateful that the Doctors didn’t just look at me and say to wait and see what BBG did, I am grateful that we have been told we will be under GOSH even if they never know what condition BBG has for the rest of her childhood. I am grateful to know that although we are still in undiagnosed limbo land we are being listened to, we are being treated by some of the best doctors and specialists in the world. Whereas some of the parents I have spoken to are not in such a lucky position.
I guess the doctors know what they are looking for isn’t something nice which is why they are keeping an extremely close eye on BBG. There is obviously something that they aren’t telling us. However, I am just glad they are listening to us the parents as we say there is something not right with BBG.
We will keep fingers crossed that in 3 years time we can just laugh at all the stress this has caused but for the time being we will ride the undiagnosed wave and count our blessings that we have a wonderful team of professionals all helping my baby girl get a diagnosis.