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Dee’s Story

Prior to this, Dee was teaching PE at Longburn Adventist College, HITT training 3x week, playing sport multiple times a week, and coaching student sport teams every week. This account of Dee’s story is written and updated (semi-regularly) by his wife, Steph.

A special thank you to everyone who has supported us in so many different ways!

We are both very humbled by this whole experience.

God is with us.

October 2021

Monday 18 - Start of Term 4

Extreme tiredness & fatigue
Straight to bed after school each day

Thursday 21 - Staff vs Student Hockey game - felt extreme tiredness during game

Friday 29 - Staff vs Student Football game

Sore foot - needed to come off field

Saturday 30 - Morning Basketball

Leg gave way
Thought it was lack of warm-up so warmed up then went back on
Legs gave way and fell
Came home early
Went to bed

Sunday 31 - Loss of coordination and strength over weekend

Stayed in bed for the weekend with ‘weird feeling legs’

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November

Monday 1 - GP appointment

Blood tests
X-rays
Gradual loss of mobility and coordination during the week
Unable to walk properly or go to work within a few days. We thought it was likely a sport injury.

Sunday 14 - Admitted to hospital

Able to stagger a small distance with crutches
Able to stand with knees locked
Lack of strength and coordination to walk

Thursday 18 - Testing in WGT hospital

Specialist nerve & muscle testing
All testing has come back ‘clear’

Monday 22 - Mobility, strength & coordination continues to get worse

Unable to consistently support own weight standing
Complete loss of independence

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November

Monday 29 - New round of testing begins

Doctor team review of current results & new testing ordered
Low heart rate found (40bpm)
Some other random ‘unconnected’ symptoms
New testing also inconclusive
Unable to stand or lift any weight on legs. Legs are dead weight.

Tuesday 30 - Mobility, strength & coordination continues to get worse

Unable to transfer into chair/bed/toilet
Complete lower half paralysis some days, other days have some minimal movements (eg; toe)
Catheter put in

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December

Saturday 4 - Mobility, strength & coordination continue to get worse

Loss of bodily functions
Completely dependent
No leg function
Appears that ‘paralysis’ is moving up the body. Core very weak now.

Sunday 5 - Establishment of the Give-A-Little page

After multiple requests to set something up to help with the practical requirements of our new life, we decided to share our story and ‘let everyone in’ on what is going on.
We had an immediate and overwhelming response to this!
We are both very humbled by this whole experience!

Monday 6 December - Move to STAR 2 - Rehabilitation begins for FND

Doctor visits on Monday & Friday only now
New team - physiotherapists, occupational therapists, & nursing staff. Eventually will be given a social worker too.
Feeling very overwhelmed with the love, prayers, encouragement, and support from our support network
Basketball Manawatu organising a fundraising 3-on-3 basketball competition for Dee
Neil Wallace organising a ‘River Rollathon’ around the Palmerston North walkways to raise funds for Dee
Kate & Craig Goodrick donating a trailer load of firewood for auction/raffle to raise money for Dee

Tuesday 7 - Extreme tiredness and muscle soreness due to the new expectations of physio

Struggling to stay upright in wheelchair for lengths of time
Struggling to transfer from bed to wheelchair, even with assistance
Dropped when transferring on multiple occasions
Struggling to support himself to stay upright for any length of time, even when sitting in his wheelchair.

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December

Harmony’s Birthday

Wednesday 8 December - Harmony’s 14th Family Birthday Party outside the STAR Ward

Not responding to the physio treatment as would normally be expected with FND, instead still becoming less mobile and having continued worsening symptoms. Unable to sit straight up in wheelchair now.
Using a full hoist for transfers due to lack of mobility and core strength
Seems the paralysis is continuing to move up his body well into his core/abdominal area now. Struggling to sit upright in wheelchair, legs are completely dead with no movement at all now.

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December

Thursday 9 December - Maria Henry’s Retirement Party

Dee really feeling like he is missing out on the special things happening around him now. Life in hospital is taking a toll on everyone.
Experiencing complete fatigue
Complete paralysis now in both legs, hips, and lower torso. Unable to lift himself over on bed.
Immediate and wider family support team also feeling tired now, particularly hard as kids still are not allowed into the hospital to visit due to Covid restrictions.
Special healing prayers from Pastor John Faiz and wife Kiri - organised by Liz Wolfsbauer from Legacy church. This hugely boosted Dee’s spirits and was divine timing.

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December

Friday 10th December - New Diagnosis by Dr Bourke

Steph’s Dad’s 70th Birthday. Dee unable to come as we had previously planned as he is reliant on hoist now for transfers.
Life is not as simple as just doing what you would normally do, but now in a wheelchair!
Bowel & bladder management is a significant issue now
Fatigue is a significant issue
Transferring between chair is a significant issue - needing specialised equipment, ie; hoist

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December

Dr Bourke

Dr Bourke - new (very experienced) doctor to Dee’s case - oversee STAR ward patients

Repeated same strength (push / pull / reflex) tests. When foot curled under (as usual) Dr Bourke said "thats not FND"
Relooked at spine scans and a long lesion was found running the entire length of the spinal cord (from above nipple line to lower back).
Previous doctors had missed it because it was so large. Normally lesions are small shadows or abnormalities on the scan, whereas Dee's one is so large it looked like it was the actual spinal cord rather than a lesion.
Plan is for immediate steroid treatment to reduce the immune response to the lesion, then potentially plasma treatment.
Close monitoring of the lesion to see response to the steroid treatment.
Not known what may have caused the lesion, if it is cancerous, or how it will respond to treatment.
He is being sent to the Burwood Spinal Unit for more specialised care and treatment.
There is an expectation that we will go with him to support his recovery. We don't know how many weeks or months this will be. There is still a lot that is unknown at this stage.
Monday we are meeting with the social worker, occupational therapist, and the specialist doctor team to make plans for Dee's transfer to Christchurch.
The children are struggling with the significant change that is required from them in living arrangements and decisions that need to be made around this. We all had a little cry. Our plans to get Dee home for Christmas have dramatically changed now. However, it is good news they have found this.

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December

Sabbath blessings

Sabbath 11 December - Sabbath Blessings

In spite of being tired, we are so very blessed. Today's message from God… “Head up, shoulders back, thoughts positive, heart set on the promises of God!” He really is with us through all of this. We both have a real sense of His peace.
Very blessed by Miss Cas (Residential Dean) and the LAC House girls taking Sabbath morning worship for us at the front of the STAR ward.
A very powerful witness from these young ladies! What a blessing we had!
1 Timothy 4:11-14 “Don’t let anyone look down on you because you are young, but set an example for the believers in speech, in conduct, in love, in faith and in purity.” NIV

Steroids seem to be kicking in.
Seemed to be stronger in core today, sitting up much straighter in chair without as much pain
Managed a transfer from bed to wheelchair without hoist!
More energy today - Rested? Good sleep? Sabbath? God’s Holy Spirit?

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December

12 December - 17 Year Wedding Anniversary

Let LAC staff know about Burwood Spinal Transfer
We will not be at the staff end of year function, as previously planned. Dee really wanted to come down and say hi and thanks to everyone from school, but hospital staff wont let him leave (and honestly, I doubt he could actually handle being out for that long!)
Basketball 3-on-3 fundraiser today
CG Training end of year celebration & farewell to Brooke
Preparing for family move to Christchurch
Steroids are working!
Got a little bit of movement in right leg today
Having some response in core
Sitting up nice and straight in wheelchair!

Monday 13 December - FANTASTIC DAY… Thank you Jesus!

Meet with Dee’s main Neurologist who explained how all the tests fitted into the big picture, what they had found, what they were looking for, and what might happen next.
Dee has responded VERY well to the steroid treatment.

Pin-prick feeling has returned in his upper torso, down to almost the belly button.
He can flex his right foot and lift his leg a wee bit.
His left leg is still completely dead
Got into an assisted stand during physio session today! Physiotherapists were amazed at the complete transformation since Friday!

They plan to collect more images to compare the lesion from before the steroids - looking for changes and finding his new baseline.
The intention is to give him plasma transfusions after the steroid treatment is complete.
They need to check if Burwood can continue the plasma treatment before the transfer is arranged.
They plan to continue monitoring his changes for another few days/week before making plans to move him down.
They are looking for a diagnosis similar to Multiple Sclerosis (like a cousin of MS).
Steph & kids have decided to stay in PN for Christmas with family regardless of when Dee moves to Burwood.

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mONDAY 13 DECEMBER

pHYSIO sESSION (During Steroid Treatment)

First time transfering on a banana board after being full hoist

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mONDAY 13 DECEMBER

pHYSIO sESSION (During Steroid Treatment)

First time transfering on a banana board after being full hoist

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Waiting waiting waiting

‘Twas the week before christmas

Friday 17 - Sunday 19 December

A very low few days
Severe fatigue has returned. Unable to stay awake, even with visitors. Falling asleep mid (his own) sentence!
Regression of bowel and bladder management since steroids ended on Thursday.
Still has some movement in right leg.
Left leg has started to make some involuntary twitching movements.
Doctor is reluctant to say anything and simply that they will continue to monitor what his body's reaction is to the steroid treatment.
MRI scans were cancelled this week. Unknown as to why.
Bloods are being taken regularly.
Developed a bladder infection. Lots of blood in catheter. Started antibiotics for this.
A doctor team review is scheduled for next week.
We continue to wait for answers. All in God's time.
It all feels so disappointing after the high of steroids!
Sabbath lunch with the family in the garden of tranquility.
Able to transfer himself from bed to commode, bed to wheelchair. Needs assistance with bathroom routine.
Able to stand in the steady with 2x physio assistants (holding him, the steady, and his legs) for short bursts of time. Up to 3 stand-ups before exhaustion.
Feels quite depressing not having a plan to work towards.
No one will say if he will be allowed home for Christmas or if he will still be going to Burwood. We are feeling quite frustrated by the whole PN hospital system… as we enter our 6th week here!!

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December

neuromyelitis optica spectrum disorder (NMOSD)

Monday 20 December

neuromyelitis optica spectrum disorder (NMOSD). Used to be known as Devic Desease.
inflammation of the spinal cord (myelitis)
inflammation of the spinal cord, a condition known as transverse myelitis because the symptoms tend to affect some, and often all motor, sensory and autonomic functions (bladder and bowel) below a certain level on the body, although, not infrequently, symptoms may be confined to one side of the body. Affected individuals may experience pain in the spine or limbs, and mild to severe paralysis (paraparesis to paraplegia) of the lower limbs, and loss of bowel and bladder control. Deep tendon reflexes may be exaggerated, or may be diminished or absent initially and later become exaggerated. A variable degree of sensory loss may occur. Affected individuals may also have a stiff neck, back or limb pain, and/or headaches. This syndrome may be indistinguishable from other cases of “idiopathic” transverse myelitis.
may be difficult to distinguish between NMOSD and multiple sclerosis because both may cause optic neuritis and myelitis as symptoms. However, the optic neuritis and myelitis tend to be more severe in NMOSD
In most cases of NMOSD, the initial symptoms of vision loss or paralysis improve with standard treatment with high dose corticosteroids, and partial recovery of vision, motor, sensory, or bladder function occurs. However, in recurring cases, NMOSD frequently causes significant permanent disturbances of vision and/or spinal cord function leading to blindness or impaired mobility.
Autoimmune disorders occur when the body’s natural defenses against disease or invading organisms (such as bacteria), for unknown reasons, suddenly begin to attack healthy tissue. These defenses, for reasons not at all understood, attack proteins in the central nervous system,
Plasma exchange may be effective in patients who experience acute severe attacks that do not response to intravenous corticosteroids. This procedure involves removing some blood and mechanically separating the blood cells from the fluid (plasma). Blood cells are then mixed with a replacement solution and returned to the body.
For long-term suppression of the disease, a variety of immunosuppressive drugs are regarded by many clinicians as first-line therapy. Corticosteroids, azathioprine, mycophenolate mofetil and rituximab are the treatments most widely prescribed treatments
neuroimmune disorder
plasma exchange (PLEX)
prevention of future attacks with immunosuppressants and aggressive rehabilitation
In NMOSD, the likelihood of recurrence of disease activity is greater than 90%. Attacks in NMOSD can be devastating.
ongoing treatment with medications that suppress the immune system and prevent relapses is necessary
Fatigue
Fatigue is the lack of mental and/or physical energy. Fatigue can be a direct result of a disease process (primary fatigue) or an indirect result (secondary fatigue). In NMOSD, fatigue is more often thought to be a result of secondary fatigue.
plasma exchange (a procedure that involves removing some of the plasma (the fluid portion of the blood) from the blood.6 Next, blood cells are extracted from the plasma and then, the blood cells are mixed with a replacement solution and returned to the body.
The primary goal of the plasma exchange is to lower the level of NMO-IgG (anti-AQP4 antibody) in the blood.
plasmapheresis is able to stop the malfunction of the immune cells by removing the blood plasma that contains the malfunctioning antibodies.
Plasmapheresis is also a procedure aimed at removing anti-AQPR antibodies from the blood. Plasmapheresis differs from plasma exchange in that it removes a smaller amount of plasma from the blood (usually less than 15% of the total blood volume. It does not require a person to get replacement fluid.
Vitamin D (calcitriol) is considered a steroid-like hormone, that is produced in the kidneys. Steroids (short for corticosteroids) are synthetic drugs that closely resemble cortisol, a hormone that your body produces naturally. Steroids work by decreasing inflammation and reducing the activity of the immune system; they are synthetic (man-made) drugs used to treat a variety of inflammatory diseases and conditions. Steroids are commonly used to decrease inflammation and reduce the activity of the immune system in the treatment of NMOSD
.8 A study conducted in 2014 discovered a link between vitamin D deficiency and NMOSD. The study authors wrote, “patients with NMOSD can be of high risk for vitamin D deficiency and we recommend the screening of vitamin D levels in these patients.”9
Neuromyelitis optica spectrum disorder is a chronic, debilitating disease that has no cure. But, just like in other incurable diseases, there is still some hope
It’s also vital to develop new coping skills and reach out to as many support people/systems as possible. For those who are newly diagnosed with NMOSD,an important part of your treatment plan is to start building a support network. Attending support groups and becoming involved in online support resources will help to equip you with the armor needed to effectively cope with the disease, on a daily basis. https://www.verywellhealth.com/neuromyelitis-optica-spectrum-disorder-treatment-4783139
don’t focus intensely on the future, instead, try to live each day in the here and now. Letting go of the things you cannot control (such as future attacks) and taking control of those you can (like reaching out to a support network) can help enable people with NMOSD to live the highest possible quality of life.
Is there a cure for NMO? No, but the prognosis for the disease has improved dramatically with the development of medications that target the antibodies known to attack proteins in the optic nerve and/or spinal cord
Neuromyelitis optica spectrum disorder (NMOSD) is a rare, chronic (long-term), demyelinating, autoimmune disease of the central nervous system (CNS). It is also commonly referred to as Devic’s disease. The disorder primarily affects the optic nerve and spinal cord.
not getting consistent sleep will worsen every other aspect of NMOSD!
Two Forms of NMOSD
There are two types of NMOSD, including:
The relapsing form of NMOSD is the most common type of the disorder, involving recurrent relapses/episodes and periods of recovery, lasting months or sometimes even years apart.2
The monophasic form of NMOSD involves one single episode that may last from 30 to 60 days. Once this initial episode is over, there are no subsequent flare-ups.1

Plasma exchange
More recovery down the line
Flickers in left leg indicate permanent damage on left side
Nmo sd
Nuro myliticis optica spectrum disorder
Used to be called devix disease
Antimog antibody
Nmi spectrum disorder
Unknown reason making antibidies to spjnal cord
Steroids prevent body making qntibodies
Longterm prevention
Plasma exchange looks like dialysis diltering protien
Strips antibodoes from blod
Removes clot ability in blood
Highter risk of infection
Clot risk
Imbalance of protien and fluids so swelling in legs
Whole process is 5 exchanges - 10 dqys
1 day betweet.
Line in shoulder
Regulqr blood tests to check for clotting
Plasma for 2 weeks
No burwood
Wed or friday 1st exchange
Prevention in long run
Immunio supression
Dampen things down
Retuximid - because of major flair - 6mths infusion - (2wks for first one)
Can bring information to read on this
Ot/ physio
Plastic bag
Book mobility taxi
Shower curtqin

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Wednesday 22 December 2021

Preparing For Dee To Be Allowed Home

For Christmas Day

Occupational Therapists (OTs)

Meeting to discuss equipment needs at home
Equipment delivered to the house and OT’s visit the house to check it all out.
OT’s explained how the Ministry of Health equipment funding works for the bathroom modifications we need.
Basically she said that there is a huge checklist of stuff that needs to happen BEFORE we get on the the approximately ONE YEAR WAIT list for a ‘ministry approved builder’ to come and install a bathroom up to the value of $8000. The checklist alone will be a long way down the track due to Dee being ‘between the two different doctor teams’.
She told us that we would be much better off just going ahead and doing it ourselves with our ‘builder family & friends’ because Dee is young and strong and motivated to improve, so he will constantly get pushed to the bottom of the priority list for home modifications.
Due to the current bathroom situation, it is impossible for Dee to come home for any length of time as he needs wet area access bathroom facilities.
Currently we have been loaned a commode chair for use in the bedroom. Still has a catheter.
Unable to use toilet or bathroom as they are too small for his chair, or the commode.

Physiotherapists

Discussion of home-visit plan during physio session. Outline of requirements for exercises he needs to do at home so he doesn't get stiff.
Info on booking mobility taxi from hospital ($100 trip!)
Tips and tricks to transfer when not at hospital (ie; taking a plastic bag or shower curtain to slide across on)

Doctors, Nurses & Plasma Team

First plasma treatment on Wednesday afternoon. 6 hour treatment.
Plasma is every second day, so Friday morning the RN will come into work early (out of the goodness of her heart!) so that Dee can have his treatment in time to come home for Christmas.
Arrangement of IV antibiotics to be changed to oral medication so he doesn’t have to return to hospital for his 8-hourly dose.

Family

Prepared kids for the ‘new’ Dad coming home
Preparing the space; decluttering the house, hallways, bedroom, living areas, and doorways for wheelchair access. Moving hallway shelves, heaters, fans, plugs etc.
Finding a space for the new equipment to live
Cleaning the equipment (ie; commode) before Dee uses it
Adjusting all the parts for his height and weight, learning how to use it before he gets in it.

Now praying everything goes to plan, so that he actually gets to come home!

No complications in the next 24 hours please Lord! We all need this!!

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So Many Blessings!

Give-a-little Donors

Overwhelming response
Julz & Dan Fonotia, Briana Walker, Jason Taivairanga, Teresa Shailer, Bex & Nolan, Taria Atuatika, Eifion & Juliana, Gabriel & Kim, Sione, Zavier, Chanté & Rehu/Kingi whanau, Jody & Jon, Brenda & Tony, Chris Tyrrell, Rob & Charisa, Norman & 110 Walkers Rd family, Connor, Jessica Hiri, Brooke, Lex, Charlie, Nigel & Denise, Malakai, Alyssa Smaling, Bryan Maranga, Danielle & Martin/Prisk whanau, Liam & Luke Blakeborough, Emma, Stu Slack, Glynis, Zach, Kym & Kim, Kyra Mcpeel, Bruce Sharp, Rach & Nath, Liv, Kate Moore, Abbey Kernahan, Chucky, Tamar & Francis, Hanchen, Faith, Errol, Tina, Hayden & Brie, Jie En Yang, Andre Afamasaga, Tim Moseti, Cat Righton, Christine, Willy Arama, Lorraine Edwards, Lynley, Julie Sergent, Isles Construction, Katrina Barber, Steve Young, Richie Hewson, Keith Warner, Cushla Lester, Aidan, Michelle & Amyrose, Aunty Nane & Jack, Dan Simon, Kim & Van, Rex Morales
And all the private donors who gave generously

Cash Donors

Sharina, Neroli & Terry, Maree & Jason, Annette Weir, and Jesyreel & Stew, putting money directly into our bank account for Christmas, groceries & meals.
Bismark family, Erni Chen, and Souza family for giving us cash gifts towards groceries, Christmas, meals, etc.

Manawatu Basketball

3-on-3 Christmas basketball fundraiser organised by Tess Petley - full registration fees gifted
Mission for Men support - Sausage Sizzle BBQ
Central Energy Trust Arena sponsored free arena hire

Vicki & Steve

Took my car, like literally picked it up from my house, and dropped it back home, to top up the oil, get some engine stuff fixed, put a new WOF on it.
Refused my payment offer.
Made it happen at a crazy busy time of the year for them!
Did the whole thing with absolutely no fuss or drama for me…. This was SUCH a huge blessing for me, because these are the types of things that I am not keeping up with or coping with

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So Many Blessings!

Cheryl & Kerryn

Housework and deep cleaning
Chopped out all the gross, stink jobs that everyone hates doing… ie; the oven, kitchen roof, xpelair etc
Gave HEAPS of hours of cleaning… while Steph lay in bed sleeping!

Kim

Gardening & yard work
Tidied up all around the edges with the weed eater
Weeded and tidied up the rose garden
Cleaned and removed all the rubbish from the driveway
Made our place look like a million bucks!
Spent a whole day out there!!

Pam & Derrylea

Food - consistent meals for the 14 of us (Tooley’s & Nagarepa’s & homestay students)
Gardening - tidying up the vege garden and saving the tomatoes!
Gifts - Faith over Fear necklace - such a blessing! Bible journaling treats for Steph & the kids.
Wisdom - prayer with us and solid words of advice when Satan is trying to steal our joy and keep us down!

Pulenga Family

Weed eating
Removal of tree cuttings and wood that had previously been cut down and was lying in driveway
Trimming of branches that were overgrown in yard and on school path that we use

Tooley’s

Daily housework, washing, cooking for Steph and the 5 teenages living there!
Yard work, tree trimming, removal of furniture to make space for wheelchair etc
Childcare & pet care

Meal Train Donors

A couple of week’s worth of meals and groceries delivered from Diana, Aroha, Greg & Stacey, Nicole, Derrylea & Pam, Verona, Jesyreel & Stew, Priscilla, Kim, & Rachel

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Plasma Exchange

(THERAPEUTIC APHERESIS)

Plasma exchange, also known as plasmapheresis, is a way to "clean" your blood. It works sort of like kidney dialysis. During the treatment, plasma, the liquid part of your blood, gets replaced with plasma from a donor or with a plasma substitute. Dee has 12 bottles of plasma to exchange. The first time took 7 hours. This happens every second day, for 10 days.

Checking all 12 bottles, boxes and numbers against patient information.

The setup takes about an hour in total. The machine has to be primed and runs through a cycle before Dee gets hooked into it.

The spinning part inside the machine that separates the plasma out of the blood. It sounds very similar to a washing machine on the spin cycle! It’s very noisy. All Dee’s blood circulates through the tubes and through the machine, then back into him.

Hooking him up… straight to the jugular! This catheter was surgically inserted especially for the plasma exchange. One line removes the blood, it goes through the plasma machine, then back in through the other line.

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Christmas 2021

Friday 24 December

Plasma nurse came into work early (5am) to do his exchange before 1pm taxi
11:45am plasma exchange finished. Shower & pack. Moved taxi time to 1:30pm
Meeting with nurse to teach Steph how to give Dee his anti-clot injection and administer his other required meds while at home.
Meeting with social worker to discuss some of the upcoming community connections and support that can help with getting home in the future.
Mobility taxi (Black & Gold) arrived at STAR 2 to pick up Dee!!

Arriving Home

Yay…. he is home! So very excited!
Difficult to navigate his wheelchair into the house… his long legs and feet hanging off the end wanted to get caught on every corner! Got him in the door on the third attempt with people lifting from inside and outside!!
Very tight turns around corners inside the house too! Particularly into kitchen and master bedroom. No possibility of turning into bathroom! Lucky we got the commode chair!
What a gift that he is home with us! Kids are so excited!
Dee had some mixed feelings about being home. Obviously, he loved being home and out of hospital, however, his memories of being home are so different from what he can do at home now. It was a wee bit of a wake up call for him, just how much he has changed.

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Christmas 2021

Friday 24 December

Plasma nurse came into work early (5am) to do his exchange before 1pm taxi
11:45am plasma exchange finished. Shower & pack. Moved taxi time to 1:30pm
Meeting with nurse to teach Steph how to give Dee his anti-clot injection and administer his other required meds while at home.
Meeting with social worker to discuss some of the upcoming community connections and support that can help with getting home in the future.
Mobility taxi (Black & Gold) arrived at STAR 2 to pick up Dee!!

Arriving Home

Yay…. he is home! So very excited!
Difficult to navigate his wheelchair into the house… his long legs and feet hanging off the end wanted to get caught on every corner! Got him in the door on the third attempt with people lifting from inside and outside!!
Very tight turns around corners inside the house too! Particularly into kitchen and master bedroom. No possibility of turning into bathroom! Lucky we got the commode chair!
What a gift that he is home with us! Kids are so excited!
Dee had some mixed feelings about being home. Obviously, he loved being home and out of hospital, however, his memories of being home are so different from what he can do at home now. It was a wee bit of a wake up call for him, just how much he has changed.

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Juggling Home & Hospital Life

International Homestay Students, Harmony’s Birthday Sleepover & School Holiday life

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Juggling Home & Hospital Life

significant events & end of year celebrations

She swam to safety!

The sweet new ride!

End of year LAC staff dinner & farewell

Maria’s retirement party

My masters project is due soon!!

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Juggling Home & Hospital Life

Dad’s 60th Birthday

My support life-line

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Juggling Home & Hospital Life

Maintaining friendships & Life

The Community Group (CG) Training crew.. Honouring the new grey sweatshirt!

Glenn’s famous Grey Sweatshirt… RIP

A special lunch with some special ladies!

Facetime fun

Dee’s ‘Riley’ doll

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Juggling Home & Hospital Life

Missing the comforts of home

Coming home for a visit really highlighted the very real struggles of moving Dee around the house and managing everyday life. We have limited mobility equipment and we both gave a relieved sigh when we re-entered the hospital room! What a weird feeling to welcome the return to the hospital… almost like it was ‘home’. It is funny to think that Dee even misses the dogs!

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Juggling Home & Hospital Life

So much new information and so much to learn

The line of spinal damage.

Dee can not feel the pin pricks under the lower line. That is where his paralysis starts.

Feeling is inconsistent between the lines.

It’s hard to see in the photo, but on the right side, there is visible swelling around and under the dot.

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The Dark Cloud

It has actually taken me 3 weeks to write this. (It is now the 14th of January 2022)

Going back to hospital after Christmas was an extremely difficult time. The hospital basically shut down, skeleton staff maintaining lite duties. No docotors visited. No tests done. No treatments given. No plans made. No hope for change. No visitors. As Dee said, “just lying here waiting to die”.

The realisiation of what life is like now began, the mourning of his old self and identity, the failed plasma improvements.

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The Dark Cloud

10 Jan Retracted the NMOSD diagnosis. Making plans to send him to Burwood (again).

Facebook post to the world…

Dee is a paraplegic. 🦽 He is paralyzed from about T4 down for no known reason. He displays all the symptoms of having permanent spinal damage, including the loss of his bladder and bowel functions. 🧻🚽☢️He has the use of his arms, but not his lower torso or legs.

And you'd never believe it... the doctors 🩺have 'misdiagnosed' him again! First they told us it was FND, then the told us it was NMOSD, now they are telling us (after another review by a Wellington specialist) they just don't know what is causing his paralysis, they may never know, and are not going ahead with the treatment as planned! 😭😔👨‍🦽 They have instead decided to send him to the Burwood spinal unit to learn how to live as a paraplegic. (Although we have already been told this would happen many weeks ago, so we will see if/when it actually happens!)

Just to clarify; it is some kind of medical ailment/syndrome/disorder affecting his spine. 🧬 He has not had an accident.

It is going to be a looooong 🐌 road to 'recovery' (whatever that looks like)... learning how to live his new life, ♿️ manage his bodily functions 💩🧻🤢🥴🤣 so he can have freedom from the hospital facilities, find new things to enjoy, 🤹🎼🎤be able to go out and have some fun again, learn how to manage himself, and prepare us and our home for him to eventually return. 💪👨‍🦼 There is so much to learn and to consider, and it will all take time. Dee came home during the weekend (second time in 9 weeks of his hospital stay) and it really identifies just how hard life is without the full range of mobility equipment that the hospital provides. Simple things, like readjusting his hips or sitting up in bed, 🛏 are almost impossible without a moving bed and hanging grip rail... let alone transferring onto furniture of different heights. Wow... you really take the simple things in life for granted! 🥺🦵

Unfortunately, due to the 'no diagnosis' Dee doesn't fit nicely into any of the funding categories and this has (and will continue to be) a real battle for us. 😌 We are in a constant holding pattern, waiting for more tests, waiting for a diagnosis, waiting for someone else to do something so we can get something else approved, waiting for paperwork that is still waiting for a diagnosis. The system is flawed.

We would just like to shout-out to everyone for the incredible blessings; 🙏 the encouraging words, the prayers, the monetary gifts & groceries, the house & garden work, the mobility taxi rides, the WOF, the teen-sitting, the meals, etc! You guys have been such a huge blessing to us... We are so blessed to have all of you in our lives!🥰❤️😍💕 THANK YOU... you have helped carry us! We love you all!

Life is so unpredictable it can change in an instant! ⏰ Be ready for Jesus to come!

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