So here we are Hannah, Henry, Arlo (4), Ethan (2) & Orla >1 week.

 

Our beautiful daughter was born 2nd July 2018. She is perfect in our eyes but we have had a challenging few months. Orla was born deaf and with brain abnormalities the later particularly causing a great deal of anxiety and concern for her well being and the future. So what have we learnt?

Orla’s right ear is profoundly deaf across almost all pitches. More tests are required but the only likely way she may have any use of this ear will be with a cochlear implant (CI) although that is not certain at this stage and comes with its own risks.

Orla’s left ear has ‘sloping loss’ across the tested pitches. At high pitches it is moderate improving as the pitch lowers until it is in fact normal. She will be able to hear speech through this ear but not all sounds and it is unclear exactly what she will hear. The below scale demonstrates the same.

Orla’s MRI scan on her brain was not great to say the least with calcium deposits and incorrect architecture – her brain has more folds than yours or mine. No one can say (professionals included) what Orla’s cognitive ability will be. She smiles and laughs but has not started to babble yet. This is delayed and we don’t know if this is due to the hearing issues or her cognition. It will be a difficult few years understanding it all.

You can read more about Orla and CMV in my first post which is available in the sidebar. I hope to write more posts in the future to update you on all things Orla and all things Ultra.

Here are the rest of the clan.

Hannah is the rock, a Physiotherapist by trade and currently looking after too very active boys and Orla. Meticulous and incredibly organised Hannah has contacted, consulted with and managed everyone to do with Orla’s diganosis and on going care requirements. Orla is a very lucky girl.

Arlo is the sensitive big brother caring most of the time although starting to learn a stubborn streak (probably from his Daddy). Besotted with his little sister there is no doubt Arlo will keep a close eye on Orla for years to come.

 

 

 

 

If a photo speaks a thousand words then this photo describes Ethan perfectly. A cheeky chappie who has had no need to develop a stubborn streak as it has run through him from birth. If he’s not fighting with his brother then these two boys will form a very serious protection detail for their little sister.

 

 

 

Butler is nearly 6 and the soul of the family. Cries when the kids cry and a very charismatic character – he will always be happiest either chasing squirels or resting on the sofa by the fire.

 

 

 

 

An ultra runner I am NOT. At nearly 2m and 116kgs (currently!) running a long way with a lot of elevation is not a great fit. A true love of the mountains means I can’t wait for the challenges that lie ahead I can only hope to not let anyone down.