Fairy Steps 4 Ella

The only way I can really summarise the last few months is that I have never had the culmination of such love, fear, excitement, wonder, fatigue and gratefulness to this extent – all in one moment! All in back to back moments!

The St Louis trip was an incredible time. I often had to pinch myself that it was real. Taking photos in front of the hospital, with Dr TS Park and Dr Matthew Dobbs. Riding shuttles to and from the hotel and dismembering equipment and backpacks to fit it all in. Sometimes it was just me and Ella. Sometimes it was our whole family. Sometimes we were packed in with families from Denmark, Israel, Titirangi and Waikato – all there for new legs.

The surgery has been an enormous success. For the first time in Ella’s life she followed a one-page medical info sheet of what to expect post-op. The St Louis team decided it was best for Ella to head into PICU to be sedated for proper rest as she recovered. And on Day 3 it was time to sit up for the first time – and she loved it! The next day Ella stood up on her new legs.

Leaving St Louis was both an exciting and sad time. Exciting to come home, sad to leave knowing how challenging it would be to ever return to see these great new friends made. Dr Park has suggested that Ella will be independently standing within 4-6 months and walking independently in time. Her awesome physio team thought it was realistic to see Ella start school using her walking frame, and as she strengthens and learns to coordinate herself, walking canes.

So what’s this fairy doing since her big life-changing op?!? Well. Experiencing what life-changing means!

- For the first time in Ella’s life, she sleeps through the night. No more cramps or muscle spasms!

- Ella can stand flat-footed in bare-feet without anyone pushing her heels down, or needing stretches, hot wheat bags, massage, bath soaks, botox or leg casts.

- For the first time EVER Ella is comfortable enough to wear her splints ALL day. This helps Ella’s muscles stretch, and also heal from surgery at the right length. It also gives her a great foundation to balance and call out “Look at me Mama!”

- Ella can scale the rock-climbing wall at the local park with a bit of help for safety. When she gets to the top she shouts “Again!”

- Ella has learned to RUN on her walking frame! She can run down the corridors to Glow Kids and kindy and through open doors without falling! Across carparks and she is working on getting up the ramps without a push from behind!

- Ella can crash into walls with glee in her walking frame. We are trying to teach Ella how to steer but when Ella does crash, she can now lift her frame up all by herself and redirect it to where she wants to go. I think this is a moment of independent standing, don’t you??

- Ella is learning to walk on canes and with good energy levels, focus and someone close by, Ella can walk about 4-5metres on her own!

- For the first time EVER Ella enjoyed the zoo. She liked the elephant but LOVED the fences and spent the entire day side-stepping from one fenced enclosure to the other. She snored all the way home.

- Ella is eating more food as her tummy is more comfortable having all the tightness reduced, and her intestines working better – plus she is going to the toilet more often! Hooray!

- Ella has put on 3 kilos since surgery and finally is sitting on the weight chart!! She is bigger than her one year old brother! Biggest weight gain in her life.

- Ella can buddy walk around the house, walk upstairs together and push up with her legs, hold two adult’s hands and walk around a playground… and say “Look what I am going to do!” and jump as HIGH as she can! We are working on landing but Ella thinks it’s hilarious landing on her butt.

- Last weekend Ella went on her besties trampoline. This usually involves her lying down giggling while everyone jumps around her. THIS time, holding Mama’s hands, Ella jumped AND landed on two feet! She jumped until she was so exhausted her knees wouldn’t hold her up anymore and the only way she would leave the trampoline was for birthday cake.

I hope you realise our immense gratitude with your support. I also hope you know how phenomenal these surprises and achievements are for our little girl. Ella has so much potential ahead because of receiving this surgery.

Recently Ella was on 7 Sharp with Tim Wilson and team, showing off her new legs. Be sure to watch the clip if you have time.

https://www.tvnz.co.nz/one-news/new-zealand/shes-cheeky-determined-parents-risk-all-daughters-expensive-and-life-changing-operation

It is true. We ended up raising a little over $250,000NZD to get Ella to and from St Louis safely. It was an extraordinary and fearful and hopeful feat. But we did it! We had costs from her seizure admission of about $8,000NZD that we were able to pay as Ella did not hold travel insurance – thank you for letting this happen.

I have been soul-searching since our return as I had hoped to have approx. $30,000NZD left to spend on Ella’s rehabilitation over a two year period. After the trip expenses Ella is about $12,000 short of this figure to give her what she needs. I have decided to finish this year with a few more events and raffles to do the best I can to give her the best shot at rehab before school starts next May. And then see how Ella is going, and what best helps her gain what she needs for independence, fun and finding the potential of her new legs.

After that figure is raised, I will be hanging up my fundraising hat for Ella, and looking at what good we can do to help others gain fairysteps.

Hope to see some of you at Ella’s welcome home party in October and give a big thank you hug. Info will be on Facebook soon x

PS Keep an eye on What Now! for Ella’s welcome home clip!