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.

Cast update

Last night we had to have Evelyne's cast removed. The last 4-5 days she had started complaining of pain and discomfort. It was particularly when I picked her up, sitting in chairs and she had also started sleeping on her front. Looking at the cast, it appeared that it may have shifted position. After a discussion with the hospital physiotherapist we realised it was highly probable she had developed a pressure sore.

We had it removed at our local Emergency Department to find that unfortunately she did have a pressure ulcer on her spine. I'll head back to Sydney to see the doctor in spinal clinic Tuesday to decide the next plan of action. 

Curve progression and casting

Evelyne's last x-ray in her quad brace showed that the curve had again progressed. It was not a huge surprise to us, as we could visually see the spine not staying in place in her brace.  Her scoliosis had progressed to 57 degrees in the brace. As a result we decided to go ahead with casting while we are still in the cooler months. I was quite optimistic about how the casting would go this time around. She is older, walking, not in nappies, feeding herself. All factors that made the cast when she was 12 months difficult. I continue to forget however that each new step brings it's own challenges!

Last week Evelyne was fitted for the new cast.  It was done by our new specialist on the 'risser frame' in the same style as the 'Mehta' casts. She was put under a general anaesthetic and they needed at least an hour to mould it to shape.

Waiting                                                                     Recovery

Leaving the hospital

The next few days were very hard.

Day 1 was especially as she struggled to learn to balance again under the weight. Simple things like walking and sitting up were difficult.

By day 2 she was up and walking and even trying to run a little, but still unable to get on and off the toilet herself, turn over in bed, and get on and off chairs.

Day 5 I took her back to our local physio to trip some of the plaster from around her arm holes to improve movement in her shoulders.

Day 6 She was at preschool playing in the playground with the other kids.


Today, 10 days on and she is her normal happy self. 
She is sleeping in her own bed, playing, running, dancing (although she still needs help for the toilet).  She copes better than I do when she goes through a new stage. 

It takes me a while to get used to seeing her struggling. It is also hard getting used to seeing how bulky it is on her. However she has the determination to work at it until she achieves what she wants. She's my little trooper!

Friends in far places

Since starting this blog I have had the opportunity to make contact with people all over the world. Beals Syndrome is so rare, that many people turn to google for information, as I did. In fact, the main reasons I started the blog, were to document information about Beals and  make contact with others. It has proved to be effective! I regularly get emails from people around the world who have or have children with Beals and have been searching for information.

It is a strange connection that you have with someone, to have a child with the same condition. I have emailed and also talked to some on the phone to share our experiences. It is a peculiar, emotional, yet wonderful experience to feel like you can know and understand someone that you have never met, and probably never will meet. There are people who know and understand me and my story, my frustrations, fears and sadness more than some of my close friends and family. I recently spoke to another mum across the other side of the world. We shared stories and tears as we talked about our little ones.  I hope one day to meet some of them, as yet I have never physically met another person with Beals Syndrome. Yet thanks to technology, I feel less isolated  dealing with the ups and downs of life with Beals.

Respiratory problems

A couple of months ago Evelyne was diagnosed with Restrictive Lung Disease. It came as a bit of a shock, although we knew there were issues with her lungs. We were sent to a respiratory (lung) specialist for a check up after I identified she had undergone more than her fair share of chest infections last winter. She also often sounds a bit wheezy, finds it difficult to cough strongly and can get quite breathless. I had always assumed these symptoms were to do with the restriction the brace puts on her chest cavity.  The specialist informed me that he would categorise her as having Restrictive Lung Disease, and that he believes this is due to her scoliosis. He believed the curve was reducing the space available for her lungs to function normally. Although our spinal specialist believes the restriction may be more from the effect of the tight brace.

Since this diagnosis Evelyne has been using a nebuliser daily. She has hypertonic saline in the nebuliser in order to reduce the build up of mucus in her lungs. It encourages her to cough and clear the airways.  It is again not something she enjoys, but something we have had to build into her daily routine. She had a couple of chest infections at the beginning of winter, but they seem to have slowed and be less severe than last winter.
We also have been using a pram more to reduce her breathlessness, and have applied for a specialist pram through the hospital.