Our Family

Our Family

Monday, 28 October 2013

Tube Free, Hearing Aid Free, and Sitting Unaided (kinda)

Been a pretty big few weeks since our last surgery.

Robyn has been tubeless for a WHOLE week now. Since the atresia repair she seems to be coping much better with her secretions from her nose. This also seems to have helped with how tired she would get during bottle feeding. so we have gone from needing to have 500mls of milk in a day but only drinking about 200-300, to easily drinking 500mls from a bottle and then looking for more. We are now making up extra milk for a bedtime bottle instead of passing an ng tube each night. We are hoping that this continues. We think Robyn is having a bit of a growth spurt just now as she is eating and sleeping a lot and so this might be the reason she is having extra milk but we will see how she gets on at her next weigh in.

We are hoping at that next appointment to meet our crossover doctor to the local development centre and so hopefully (finally) be discharged from the infant clinic. We also have an appointment at the Gastroenterology clinic due soon and we are hoping to be discharged from them too. Pretty sure we wont need a G-tube if we don't need an NG-tube.

We also had a great appointment at Kings Cross today too. It was our first hearing assessment since the grommets were fitted. They managed an overall assessment of her hearing plus a specific assessment of her left ear. She got bored at this point so we have to go back in a few weeks to finish the assessment on her right ear.

 We were told that Robyn has an overall hearing level of 30 decibels!!!!!!!!!!
To be able to hear speech hearing must be at a level of at least 60 decibels or lower so it is now official that Robyn can hear us talking well enough to develop her own speech. This is great news. So great in fact that she no longer needs to wear her hearing aids at all. They will continue to monitor her progress in the future but they shouldn't need to intervene again.
sitting unaided

pretending to be tired
Overall the extra help with breathing easier and eating more also seems to be helping Robyn physically. We can now manage about ten seconds sitting completely unaided. And we just bought a jumperoo (naughty us, must hide it from the physio) and she loves to bounce, bounce, bounce. Finally something that lets me have my hands free for a few minutes.

Monday, 14 October 2013

ENT surgery

Our immunology  blood tests have been carried out now, just waiting for those results to come back.

In the meantime we went to Yorkhill to have follow up ENT surgery carried out. Robyn was admitted the night before surgery. This was actually good as it gave us a chance to catch up with her wee friend Finn that we  met there before.

The next day was pretty hard. Robyn was fasted for 9 hours before her op. 9 hours is a very long time for a 13 month old. However the surgery was very quick and very successful. They fitted her grommets to help with her hearing. They also had to remove some more pieces of bone from inside her nose to open her breathing passages up to allow her to breathe more easily.

She was discharged the following day and we came home with a well recovered happy little girl. Over the weekend the grandparents all said how well she seemed to be doing. Her shortest hospital stay ever only two nights.


Then on Tues she seemed to breathing very hard. She was also working very hard to get the breath she was getting. So we took her to our local hospital to get her checked over. She didn't need oxygen but was admitted overnight for monitoring. During that night her breathing got worse and her heart rate shot up to the 180's so she was taken to HDU. She bounced back pretty well with antibiotics and steroids. She was discharged again on Friday which surprised us all. She usually stays in hospital for a long time with bronchiolitis (Rhinovirus).

Not the best week we have ever had but definitely not the worst. We are hoping that this is a good sign that she will be strong enough to stay out of hospital more this winter.