We started noticing something wasn't quite right with Albys head posture when he stared at people or things.
Alby would look from the furrows of his brows and he would also tilt his head to look at things.. At first I thought it was really cute "look at my baby look how he looks at people it's like he's really trying to suss us out it's so adorable" and other people would chuckle and comment on it but no-one ever knew there was a problem not even me or his dad.
It was only when Alby was 8 months old I started getting a little worried as he wasn't holding his head up like the rest of the babies his age he would have his chin on his chest and his eyes fully lookin up but I'll be honest I was so in denial.. no parent wants there to be anything wrong with their little baby after all your own child is so perfect to yourself even the most minor things that can be found it just completely rocks you. I didn't know if he was in pain or getting irritated by it, it was so stressful for me to even think of these things Albys such a blessing to me so I worry at the most slightest thing.
Later on in that week of him turning 8 months old I spoke to my health visitor who also said she had noticed him doing it but didn't want to worry me.. not quite sure a health visitor is supposed to keep something like this from you but thank god I noticed as well.
My health visitor referred us for portage in case it was just a habit that he had developed from looking up at the TV when he was in his high chair so a lovely lady came over to our home with some pretty cool sensory toys and Alby showed them it wasn't a habit and it was something a little more as his tracking with his eyes were perfectly fine and his hand eye co-ordination was on point to.
The portage lady did mention Nystagmus and asked me if I ever noticed a wobble in his eyes and I said no.. I really really didn't see a wobble in his eyes just his head posture didn't seem right.
We managed to get an urgent appointment the next day at the ophthalmology clinic at a local doctors. When we got there and his name was called we went on through to a lady who shined lights into his eyes checked the tracking of his eyes and held cards with pictures of boats and ducks on them to see where he looked. The words then came, "Alby has horizontal Nystagmus it's only subtle at this stage." At this stage? Could it get worse, is it going to affect him in the future? Will he get picked on when he goes to school because of the way he holds his head. They were just the thoughts going through my head but I asked the doctor what I can do to help and she said "Nothing"..
That's heartbreaking to hear no matter how subtle or how severe how the hell do you manage to deal with something like that, that you can't help your own child?
She then referred us to the hospital and his appointment was on the 22nd of May but let me tell you it was the longest wait I've ever had to do because all I just kept thinking was is he okay can he see how severe is this Nystagmus.. WHAT is this Nystagmus why does my boy have it.
When we got to the hospital we seen 3 people they all begin with O so I literally only remember the name of one of them, an opthamologist. The First Lady shined lights in his eyes and moved toys around but Alby had to be woken up as he was napping so was very very groggy and not really cooperating luckily I had my Mum with us and he absolutely adores his nanny so he behaved better than he would of with just me, she said she couldn't really see the Nystagmus but went ahead and put drops into his eyes. (This was to see just how much the eyes dilated.) We were sent back into a waiting room for the next woman to see Alby, at Coventry University hospital I really do swear they are brilliant and dealt with Alby amazingly. We went on through after half an hour wait the room was dimly lit and Alby laid on me whilst the doctor began putting lenses in front of his eyes whilst singing to him "can you see my twinkling light, over here, over here." I actually couldn't believe just how well he was being usually he wouldn't sit still and he would of thrown a tantrum by now. She went on to explain that Alby may need glasses as it turns out he's very very long sighted so when they did the lense test it turned out he would need a high prescription. Like what? Nystagmus and long sighted? Have I really been in denial that long that I've refused to notice his vision? Turns out it's normal for him to have the eyesight he does and it doesn't bother him as it is all he has known and I was beating myself up a little too much because if it's all he had known it's all I had known too. She said the next doctor may not require us to have glasses as he may pull them off but I said to her if it helps my boy I'm happy for him to have them.
After another 15 minute wait we went to see the Opthamologist who confirmed he had Nystagmus and actually explained it to us just what it was and why he was holding his head in these positions. She said he tilts his head because he has a wobble in his eyes and holding his head in these positions stops it or manages it. She then went on to explain about the Null points in his eyes not being centre alligned and then told us Alby does need the glasses not just for a short period but full time. I can't deny I did have a little cry because he's my boy and the thoughts that kept going through my head was horrible. Especially the next part when she said we would have to go to birminghams children's hospital for electrodiagnostics to see the activity from the brain to the eyes, she also went on to say he would at some point need sedating to have an MRI that scared me enough without her telling me if he's still quite unsettled he will have to be sent back to birminghams children's hospital to be out under general anaesthetic. Oh god the thoughts were just horrible my little man shouldn't have to go through that, but the MRI will determine what is causing the Nystagmus and if they rule anything out then me and Albys dad will have to undergo tess to see if it's from any of us.
Anyway we went to the opticians to try some frames on him and measure his head size to get his prescription sent off for his little glasses. He's having a lovely little blue pair and a grey pair but I couldn't help but feel sad.. they completely covered my babies perfect face. He didn't like having the frames on his face but I just tried to make sense of it all. Will my family think he looks funny? What about when he goes to school will he get picked on? Kids these days are bloody horrible. I just want to protect him.
I know now it's important for him to have his glasses and he is so perfect to me it doesn't bother me what anyone else thinks. Now it's an even longer wait for his glasses to arrive! And I cannot wait to see him see me for the first time properly.
I'm still researching Nystagmus but I know it can affect some kids really bad and I know some people have it a lot worse than my boy.
I'll be sharing Albys journey with his glasses and his Nystagmus appointments with everybody.
Monday 29th May 2017 Kirsty & Alby 'My Spectacular Kid'