A new spinal cast - with a 'twist'

On Friday Evelyne had another spinal cast applied.  I have been dreading it since our last experience ended with us having to remove it after 3 weeks due to pressure sores.
After discussions with her doctor, Angus Gray, she had the cast applied over a knit-rite shirt that I sourced from the US. He also casted her under the arms as her curve is quite low and she was very restricted in the shoulders last time. I am feeling positive about the impacts of these changes.

The last few days have been hard. Although the procedure went well and Evelyne recovered from the general anaesthetic quicker than last time, she has clearly been in discomfort and pain. She was on pain medication for the first few days and I found it hard to see her struggling. Evie is so tough and does not complain, but she has struggled to do simple things like take herself to the toilet.  It is amazing to think of the changes her body is coping with. They have pushed the scoliosis angle from over 60 degrees to 39 degrees. And she has grown almost 3cm in one day! You can see in the first picture she is trying to put on a brave face.

The last 2 days Evelyne has become happier and as she says "I am getting used to my cast". She went to preschool for 2 hours yesterday and ballet this morning. Although night-times are still hard it is encouraging to see her doing so well. I am now praying she stays free of pressure sores. 

I made her a doll to take with her into the theatre and put a matching cast on it. Thankfully it was a hit! I bought the printed duct tape online last year and am now very glad that I did. Milly hasn't left her side and now Evelyne has the pink polka dots to match.

Sleep Studies

Late last year Evelyne had a sleep study done as a follow on from her Restrictive Lung Disease diagnosis. They wanted to check that she was getting enough oxygen through the night.

After we checked in at Westmead, we got our beds set up and PJs on. Then the Sleep Technician came and put a series of wires and electrodes over Evelynes Head, face, and chest. They attached them with a paste much like toothpaste which was interesting to get out of her hair the next day! We then had to put the brace back on over the top. This was probably the trickiest part, as it was difficut to make sure the electrodes were not digging in too much underneath.

All up it was a relatively positive event. Much better than what I expected, and Evie coped much better than I expected too. There were a few hours in the early morning when she woke and was upset, and the Sleep Tech's had to come in a few times to check on her, so we were a bit sleep deprived the next day. 

We recently saw the doctor for the follow up. He was very pleased with the results. He had no concerns in regards to her oxygen levels at night. A great outcome!

She can do anything!

I have previously been told that Evelyne may not be able to ride a 'normal' bike. This was thought due to her low muscle tone in her legs as well as her lack of core strength due to the scoliosis and brace. So when we went for walks we pushed Evelyne in a younger child's trike which had a parent controlled handle to push it. I wasn't too concerned as I knew of a company TAD, that helps modify bikes for older kids. I just assumed we would draw on their services one day.

Recently, a friend offered a bike for sale with training wheels and a parent handle. I thought, that's perfect! It's a standard sized bike, but we could still push her along.

We took her for her first ride, expecting to be pushing her along, and you can see the results from the video clip below. I'm not sure who was more excited, Evelyne or me.

Another lesson to never underestimate my girl!

Song : Jay Laga'aia - Bikeling - (used with permission)

Update

It has been a long time since I've written a post. I'm sure most people agree that the end of the year, Christmas and New Year is a crazy time! We had Christmas with family in Sydney, went camping for a couple of days with friends, drove 2500km to Adelaide for a family wedding, and have spent the last week involved in a Kids holiday club through church.

Evelyne was fitted with a brace in November. The x-ray showed that the angle is still over 50 degrees, so it looks like the doctors will cast again, but ran out of time to get it done before Christmas. Fortunately this meant Evelyne has been able to enjoy swimming, waterfights and baths over this hot summer.

An interview ...

My sister recently interviewed me for her blog on my experience living with a child with a disability.

A child with a disability - My sisters story

Siblings

Over the last couple of years I have been thinking about siblings of kids with disabilities. I have met many people over the years, through work as an OT and personally, who have talked of the effects of growing up with a sibling with a disability. I have also recently read the book 'Siblings' by Kate Strohm. 

The impact appears vary case to case. Many people report to have issues with feeling left out, forgotten, not as important. Some report that it strengthened their character, and they feel they are more tolerant, understanding people as a result. In Kate Strohm's book she says siblings are 'often overlooked in families struggling to cope'. She gives some practical strategies to help give siblings the attention, care and time they need.

A friend of mine once told me that as a child, her main memory of her sister's disability was that her mum would leave her so often. When she would travel away for medical appointments she felt she was always the one left behind. This is something I am very conscious of with Samuel. I am often away with Evelyne in Sydney, and now Samuel is at school, he stays at home with Jon. Jon's parents often come to stay to help with school drop off and pick up which has been wonderful! However I feel it's important to make sure Sam and I get one on one time also. 

As a result last school holidays Sam and I had a special trip together. We caught a train to the Blue Mountains, bush-walked down the giant staircase and around to Echo Point, stayed in a motel, went up and down the scenic railway and cable car, and bush-walked some more before catching a train back home. Samuel took my old camera and took pictures along the way, and made a scrapbook afterwards with photos and brochures and maps. We had a great time together and he was so excited that he got to come on a special trip with me. It was a wonderful 'adventure' together.

I'm a big girl now!

Evelyne recently celebrated her 4th birthday. She is very excited to be 'big now'. We had a lovely 'rainbow party' for her in a Sydney park with both sides of the family. She ran around, played in the sandpit, and enjoyed the fact she is cast and brace free at the moment.