So Jake was now around 6 weeks old. He started becoming unsettled alot and showing signs of colic. I spent so many hours of most days doing everything I could just to settle him. He was content otherwise. Happy. But just didn’t seem to be connecting with us visually like Aneya did.
He had his normal mother and baby 6/8 week check and the Dr said he was perfect and everything was how it should be but when talking to me he took a pencil again to Jake and started moving it side to side again close to his eyes. I thought this was odd because he had already done this twice when he was checking him and for him to then go back and repeat it, after telling me all was fine and moving on to to ask me questions about myself, so I asked him “are you unhappy with his eye site?” He replied “um no why are you?” I said “well now that you mention it, he’s not been making eye contact with me during bottle feeds and isn’t watching us around the room like our daughter did at this age” he said “yes I agree but he’s still young, I’m sure everything’s fine”. This was a phrase we didn’t realise we’d learn to live with hearing. He told me to come back when he was 12 weeks old if things wernt better.
At 8 weeks old I really wasn’t happy. Something in my tummy was telling me something wasn’t quite right. Soooo many people thought I was being dramatic or over looking things which was so frustrating. I just knew. So I booked a drs apt and he again said to wait a couple more weeks and come back when he was 14 weeks. Again, I didn’t wait that amount of time and went back when he was 12 weeks old.
By now, being 3 months old and having a clear worry about his vision the dr agreed to refer him to REI at derriford for an appointment. That wait was long and my mind was wondering. Jakes cousin Dexter, was 10 days older then him and he was starting to reach for toys that he could see while in the baby gym but Jake wasn’t interested.
At 14 weeks old we got his appointment and met with a lovely man who assessed him. He told us he needed to get his boss to look over a few things as he had concerns but he assured us he was sure everything was fine. She came in and assessed him and said she was going to send him for some tests as she was worried about his vision and that he might need glasses. They were happy he wasn’t blind as he was reacting to light but nothing else. I went home and cried because I thought my boy needed glasses (I know, how silly! but what mum wants even a hair to be hurt on their child’s head right?!!) Gosh if only I could tell myself back then what really was to come, I wouldn’t of believed it and would take the glasses 100 times over to replace the reality we deal with now!! Perspective I think its called 🙄
He had various tests to check the eye balls, retina, he had a visual test which flashed lights and watched signals from the eyes to the brain. All these tests came back fine (this was also going to become a theme). He was around 7 months old when we found out the instructions from the eye were getting to the brain fine so we knew it wasn’t his eyes themselves causing his visual problems. This day was the first moment that we realised we were dealing with something neurological and I cannot tell you how much our hearts sunk. I remember coming out of the apt and bumping into one of my friends, Alex who works at derriford and crying to her but holding back because we had no real lead on what things were. I wish now I really let go on this day, because the reality now hurts so much. This was probably up there with one of the hardest days in Jakes journey. We knew it was his brain not processing the information it was given and we now needed to find out why!
Around 6/7 months old we were also learning that it looked like it wasn’t just Jakes vision that was a worry….he wasn’t sitting or showing signs of being able to, he wasn’t making any signs of rolling and still wasn’t trying to reach for toys. When sitting in a bumbo with pillow support he found it hard to lift his arms when we tried getting him to grab toys. And he also hated being put down, he always seemed to be in some sort of discomfort. But…..as my boy started to grow a personality, which now remains and lights up every room he enters, he smiled ALL of the time which got us through some of the darkest days. We were referred to a community paediatritian who would become our life line and someone we now hold dear and is very important to us. She sent Jake for an MRI of his brain and referred us to a neurologist to start the Long and hard diagnostic process.
Jake's PCH2D Journey 