Good news

I did a thing

I did a thing

One of the lessons Eva taught me was to never take anything for granted, and I don’t intend to. For that reason, and so many more, I married my best friend and love of my life on the weekend. It was a surprise ceremony that was terribly kept, but wonderful… Read more

A new milestone – 20,000 downloads!!

A new milestone – 20,000 downloads!!

In August this year, 11 months after I started the podcast I announced I had reached a big milestone, I had reached 10,000 downloads. I launched the podcast in September 2015 and 11 months later I felt like I had hit something momentous (for me, not for most podcasts.) Today,… Read more

New investments in the podcast

New investments in the podcast

Last week I received my AMP Scholarship in my bank account. I suddenly had money to spend on the podcast. I did a lot of research when I first started the podcast. I bought some things cheap and other things quality. I have a tendency to start new hobbies and buy… Read more

Thank you, thank you, thank you!

I’m feeling a bit emotional today, in the best possible way. And I wanted to say thank you to everyone who has supported me  and read my posts, listened to the podcast and voted for me when I nagged at you to do so. I asked you all recently to… Read more

Delivering good news – it feels good!

Delivering good news – it feels good!

There’s something odd that happens to you when tragedy strikes. You realise you need to disseminate the information to your family and friends. You know they need to know, and they would want to know, but part of you can’t bear to tell them because you know it brings them… Read more

Washington Post’s Top Parenting Podcasts – we’re in there!

Washington Post’s Top Parenting Podcasts – we’re in there!

I didn’t have my phone on me yesterday. The usual vibrations and alerts didn’t reach me. During period five, when my year 13s were working hard on their writing, I checked my personal email. It was full of alerts that people were tagging me in posts on Facebook. I wondered… Read more

Blood letting, babies and a good result

This morning was… busy. Eva had a follow up test after her cortisol levels were shown to be slightly lower than normal at a blood test last week. People with CHARGE Syndrome often have issues with hormones due to the involvement of their pituitary gland. it can affect growth, stress,… Read more

Sitting up – whoever knew it could be so exciting?

First there was the smile. Then the giggle. Next up came rolling onto her side. Then the head lifting in tummy time. Then the rolling onto her tummy and back onto her back (with a lot of effort). Our next big goals are pushing up through her arms and weight… Read more

Christchurch, cochlear implants and some giggles

We are back from our excursion to Christchurch. The news is good. They are recommending bilateral (both sides) cochlear implants. Provided the surgery isn’t too lengthy they will be doing both of the implants in late March next year, before the Peanut turns one. They were very careful to point… Read more

Laughing – a milestone

Today I heard the Peanut’s first honest to goodness giggle. I was tickling her before her bath and she let out a breathy, continuous giggle. I’ve heard the beginnings of this before where she would sort of hmmm of enjoyment as if she was about to start laughing but it… Read more

Tummy time!!

Holy smokes I am proud of this girl. In the last two or three days her tummy time has gone from licking the carpet to this! [wpvideo xCYrFxG1]   I usually try not to post twice in one day so I have material the next day, but sheesh I was… Read more

The tug of expectations

Today is a good day. A great day, even. Today we had the Peanut’s Visiting Neuro Developmental Therapist (VNDT) over to see us. She has been over the last two weeks but the Peanut has chosen that exact day and time to nap the morning away. She is normally a… Read more

The bottom of the well

When you combine a tendency to cry when stressed, angry, sad, tired, under pressure and forced to speak to a large crowd, with five very hard months you get a lot of tears. My eyes have produced more salt water than I ever thought possible. A serious bout of sobbing… Read more

Temporarily tubeless

Seven nights in the PICU, and two nights and counting in the children’s ward. I am quietly harrassing the doctors to discharge us as the Peanut is now on no support with no need of extra oxygen. She’s back to her old self, smiling, napping, blowing rasberries and sucking frantically… Read more

We’ve got this

We have been in the PICU for a week now. This time last week I was sitting beside a very distressed baby who had not yet been intubated. Now, a week later, she has the lowest level of breathing support, nasal prongs on low flow, and we are waiting to… Read more

We've got this

We have been in the PICU for a week now. This time last week I was sitting beside a very distressed baby who had not yet been intubated. Now, a week later, she has the lowest level of breathing support, nasal prongs on low flow, and we are waiting to… Read more

She’s on the mend

She’s on the mend. She’s moving in the right direction. Slowly. Since she was admitted to Starship Hospital on Saturday night she has been switched to CPAP and off full ventilation. The nurses tried multiple times to reduce her support but each time they did The Peanut would breath for… Read more

She's on the mend

She’s on the mend. She’s moving in the right direction. Slowly. Since she was admitted to Starship Hospital on Saturday night she has been switched to CPAP and off full ventilation. The nurses tried multiple times to reduce her support but each time they did The Peanut would breath for… Read more

ONE MORE SLEEP!!

One more sleep and my baby girl is coming home. One more sleep and I get to see those smiles every day. One more sleep and I get to know the ins and outs of her schedule, be the expert on all that is the Peanut. One more sleep and… Read more

Something to smile about

In the last 15 weeks I have felt worse than I ever thought possible. When I think back to those first two weeks in the hospital I remember walking as if my legs were filled with lead. The grief was physical and heavy and weighing me down. I walked around… Read more

As a non-believer, I think I’ll just thank my obstetrician

Today marked our eighth scan to keep a watchful eye on our Peanut. The scans are spreading out in time now, so it has been three weeks since the last one. This means that for at least ten days between this scan and the last I forgot there was anything… Read more

My “so necessary bundle” arrived!

After weeks tracking my Not So Glamorous But So Necessary Bundle from Hillary Frank’s Longest Shortest Time podcast/blog and A Little Bundle, it has arrived! The track and trace info told me my bundle began its journey in Austin, Texas, then flew to Chicago, followed by Ireland where it stayed… Read more

My "so necessary bundle" arrived!

After weeks tracking my Not So Glamorous But So Necessary Bundle from Hillary Frank’s Longest Shortest Time podcast/blog and A Little Bundle, it has arrived! The track and trace info told me my bundle began its journey in Austin, Texas, then flew to Chicago, followed by Ireland where it stayed… Read more

The shopping list descreases

It turns out I wasn’t the only one doing research. At our follow up appointment the doctors were almost as stumped as us. When we found out we had an appointment with a genetics person, my first instinct was that she had a syndrome or disease which was causing the… Read more