New Wheels Arrive!

Thanks to the amazing generosity of so many people, the 'Wheels for Evie' wheelchair arrived last week. There was a lot of excitement (from all the family).
We are so excited about this chair in so many ways. It is a manual (Zippy) chair base, but has a power attachment (ZX1). As a result we have two chairs in one. This means we can still use the lightweight manual chair and fold it up in the car, but that she can also independently attach it to a power base. 

This amazing chair gives her independence and control over her own mobility. Yet we don't have to have a modified car like with most power wheelchairs. The school has paths and ramps so she can access all areas. The main issue we have to deal with is stopping her from increasing the speed and basic driver training! She wouldn't let me put 'L' plates on, but there have been a few moments I felt they were needed. She's perfecting wheelies and donuts.

We are still astounded of the generosity from friends, family, church, school, community, anonymous donations, Lions, as well as complete strangers. We are very thankful to God for the amazing supports he has given us.

First trial                         -                         Off- road                         -                       Watch out Sam!

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!

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.