Blog 11 – Glasses, music and A&E

Since Pipers positive hormone results a couple of weeks ago I strangely had a short period of feeling horrible again, like when she was first diagnosed.

I felt really helpless and upset about everything again, I was thinking more and more about her sight and it was really playing on my mind. I wasn’t expecting that kind of reaction at all, especially to good news, but when I think about it, I was probably running on adrenaline throughout the whole testing and waiting for the results and now we’ve got them back and my body and mind has calmed down, I suppose it all the worry we had been through hit me at once.

Thankfully it was only a few days and now I feel back to normal ☺️

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We had Pipers Opthalmologist appointment last week, it was her first one since her ONH diagnosis and we were confident the ophthalmologist would notice some improvements.

We went through a similar routine to the first time, but without seeing the optician.

We saw one specialist who tried to get her to track lights and sounds (Piper aced the hearing side of it again) and she done a small amount of tracking with the lights.

Then we went through to see Naz (her ophthalmologist).

She started the appointment with asking us about Piper, if we had noticed any changes and just generally how she is.

We told her about Piper sometimes being able to track lights and that she notices us when we go up close to her left side and she often turns to us (best feeling ever by the way).

Naz then shone a light in Pipers face and Piper was all smiley and happy – a good reaction to lights which is positive.

I asked Naz when Pipers eyes would next be checked by the optician to see if she would benefit from glasses (the optimist in me is still hopeful that one day she may have some useful vision), Naz said they wouldn’t need to do it again yet as it was only 3 months ago, it was quite a relief as it’s difficult getting Piper to stay still when someone’s touching her face but I also just want to know what’s going on with her vision all the time.

From her last check in October it shows she has a small prescription but that’s normal in a baby Pipers age as their eyes aren’t fully developed.

Naz then noticed Pipers squint – one of her eyes often turn inwards, I mentioned it was becoming more apparent lately and without hesitation she decided that we should try Piper with glasses. This won’t help her vision but there’s a tiny chance it may help straighten her eye so she wanted to give it a try.

(Pipers squint)

We had to take Pipers notes down so they could prescribe her some glasses but we waited in the lift with them for a little while to read through everything in there, we still haven’t had her MRI results back properly and I had a suspicion they’d be in there and they was!

In short it says her left Optic Nerve is smaller than the right – really surprising as we feel she has the most acitivity in her left eye, her pituitary gland is smaller at the back than it should be (which is why she’s a high risk for the hormone dysfunctions), her corpus collosum (the matter which connects the left and right side of the brain and enables communication between them) is a little slender. It also noted that there was no myelination (a fatty substance that surrounds some nerves) so this may be delayed or just not there.

Other than that everything else looked normal including her septum pellucidum (which separates the left and right side of the brain)

This is one of the main things they look at with ONH babies as it is often under developed or missing.

After snooping through her records (I don’t know why we had to snoop, it’s OUR daughters information!!) we went down to sort out Pipers glasses.

The lady took out a tray of teeny tiny specs and put a diddy pink pair on Piper. They fit perfectly and she looked beyond cute but I’m just not a ‘pink pink’ girl so they’re ordering in some dark grey ones (so they match all of her outfits haha!) and we should get them through the post any time now.

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We also had Pipers first session with her musical therapist – Laurence.

Just as Laurence arrived so did my dad, my dad went into the bathroom while Laurence was introducing himself to Piper….. by singing “hello Piper, it’s lovely to meet you” ….. it was really cute but knowing my dad was behind the door also listening put me in the awkward situation where your trying your hardest not to laugh. I spent the rest of the session avoiding all eye contact with my dad for fear the laugh would escape.

Laurence was brilliant though, Piper keeps doing this new face when she hears a new mans voice and she sticks her bottom lip out so he spent a lot of time talking to her and singing to calm her.

. (The lip)

He came armed with loads of instruments, he stayed for 2 hours singing to Piper and talking to me. His role is not only to help Piper but to also act as a support for me and Stevie too. He has fully opened his arms to us and told us we can contact him at any time if we need to talk, to update us on Piper or anything else we want to discuss.

Piper really listened to Laurence and towards the end she was swaying and dancing along to his singing/guitar, but she also seemed a little off for some of it, she was quiet and not herself, she was really sensitive and seemed like she was ready to burst into tears at any moment (she did a couple of times).

Around 3pm just after Laurence left she fell asleep and from there she was just not herself.

It got to around 6:30 and I tried feeding Piper her dinner, she wasn’t interested at all so I gave up after a couple of spoonfuls and bought her upstairs for a cuddle, all of a sudden she was sick out of nowhere….. literally everything that was in her stomach must have came out, she had been off all day, drowsy and her head control wasn’t great so I called 111 to get an out of hours appointment.

They decided Piper needed a paramedic to come and see her, 2 paramedics arrived shortly after the phone call and then after checking her over and doing her blood sugar levels via a heel prick and her not stirring they decided she needed to be taken to hospital.

So now Piper and I were in an ambulance heading off to the hospital.

We was led to the busy waiting room, literally every chair was filled with so many unwell children – holding sick bowls, laying down etc and I said straight away I’m not waiting there.

As Piper is borderline adrenal insufficient there’s no way I wanted to expose her to any illnesses so thankfully we was taken into a room on our own. I would’ve actually preferred to wait outside in the cold than have her around so many bugs so I’m grateful they found somewhere for us.

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We had quite a wait and then we was taken to the paediatric assessment unit. Piper had a pad put in her nappy for a urine sample and another heel prick to check her gases (sodium etc), she was so upset… her poor heels have been pricked more times than I can count and unfortunately she didn’t bleed enough to fill the tube so then had to have it again.

Her gases all came back fine (phew!) but her urine sample was off so we had to get a clean catch…. this meant I had to leave her with a nappy off, wait for her to wee and then try to catch it in a little pot. It took about an hour til she eventually went and I managed to catch just enough for them to test it.

While the nurse was off checking her urine and I was changing Piper after weeing all over herself, the doctor came round to talk and he seemed positive that Piper was ok (adrenal wise) so I optimistically started sorting all of her stuff out ready to go home and then he came back and said she needs to stay in for observation as she has a water infection. It was 3:30am by this point, I had just a chair to sit on and was desperate to go home to bed but making sure she was ok was the priority, so I ended up awake all night just watching her til we was discharged around 8am.

I got back just in time to see the kids as they was leaving for school, Stevie had to go to work, so my mum came over and I spent the whole day (apart from waking for feeds) sleeping. It’s probably the most sleep I’ve had since I had Piper!

Pipers on antibiotics now, it’s the foulest medicine ever. It tastes like chemicals and getting her to swallow it is a tough job but she seems much better and she’s acting completely normal again ☺️

Her second tooth is on its way through and she’s also mastering sitting by herself. She still isn’t rolling but we’re working most days to get her to do it (she has a whole load of chub to try to roll over so I get that it’s probably a little difficult trying to lift those thighs) haha!

(Showing off her new skills to Daddy)

(Always happy)

While it’s horrible that Piper had to go into hospital we’re grateful she did, as they managed to find out she has a water infection which could’ve gone unnoticed for much longer hadn’t we gone. It’s also a relief to know her body was coping ok with the infection and she didn’t need any extra help with her cortisol!

Clever bubba