An update on Faith's surgery.
29 July 2020
Arohanui and hello to all our friends and supporters,
It has been a while since I have updated you all of Faith's surgery.
Firstly we want to say thank you to you all, for patiently waiting with us on the news of her SDR surgery, and again, thank you for your continuing prayers for her healing.
We have been spinning around for the past month or so. While New Zealand is under level one lockdown, we were able to catch up on many appointments and meet with medical experts who look after Faith. Mummy is back as the "chauffeur" taking Faith and Nathan back to school/therapies, helping Nathan with his homework, and doing exercises with Faith. Once lockdown has eased, we took some time out to look after our parents, so life in our household is always on the go.
Our thoughts are never far from Faith's surgery. In my spare time, I watched a lot of news, such as New Zealand local news, BBC, NBC, as well as St Louis local news. We faced new challenges, while COVID 19 pandemic is gripping the world.
Currently, these are some questions which we are facing, and we are yet to find all the answers:
# Finding medical insurance that will cover us for our travels. New Zealand government has issued advice regarding the avoidance of unnecessary oversea trips. This advice impacted on what travel insurance covers (COVID 19 is not covered). It has also restricted flight schedules and tightened border control. A month ago, Air NZ announced flights to St Louis are available as early as September 1st; however, this has been pushed back to October.
# Travel safety. Major transit points on the West Coast of America to St Louis have newly confirmed COVID 19 cases daily. Masks are mandatory in many states, while other states have no such requirement. We hope the use of masks will reduce the risk soon.
# Date for SDR Surgery.
We have been communicating via email with Dr Park's team. In our last email, they have advised us that we can plan for Faith's surgery from October onwards. Faith has weak chest muscle from CP, and has recovered from Chronic Lung Diseases within the first 6 months of her life on an oxygen machine, she is prone to pneumonia (memories of hospital stays still scares me). For now, no doctor can confirm the potential long-term damage, neurologically and physically, that COVID 19 can have on a CP child. We need to make sure we are making the right decision on the timing of the surgery, and hope this will reduce the risk that we might expose her to.
With all that said, John and I have decided to request January 2021 for Faith's surgery, and I have just received a response this morning confirming they will pencil her in for January, and will liaise with us for a firm date later in the year. We are in prayer, and hope by January 2021, COVID 19 can be better controlled, and we can keep her safer.
From now on we have a lot of work in front of us. We have a window of opportunity to help her body be stronger for the surgery. We will also have to work hard to combat her growth spurt during the last few months, which has made her muscles tighter and pull on her bones. Unfortunately, some of the short-term assistance that we could get her, such as Botox, faces a long waitlist due to the lockdown.
We will have to be vigilant and keep her movement going, doubling our effort to continue the fight with her spasticity.
We pray that surging numbers of COVID 19 in the world will settle, so our friends and families around the world will be safe, and we can continue our travel for Faith.
May health and peace be with you and your household.
From Jessica and John
