- Joined
- May 21, 2019
This is maybe genuinely one of the most fucked up and grotesque pictures of a LIVING BEING I've ever seen
Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial
- Thread starter jurassic bark
- Start date
- Joined
- Mar 11, 2017
So I started looking through the thread again and saw Matthew Manuel. One of the first tard babies mentioned. Poor kid had holoprosencephaly and his parents were fundies. Not sure if it was mentioned here or I just missed it, but he died on July 15th 2021 at the age of seven.
https://matthewmanuelnel.wordpress.com/
The typical fundie stuff. He somehow created miracles just by being born a potato. I don't know how aware he was. With holoprosencephaly probably not much. And judging by this nightmarish care routine I hope the poor kid was as sentient as a desk lamp.
https://matthewmanuelnel.wordpress.com/matthews-care/
Some months after Matthew died his parents had a Praise Party. I guess this is a celebration of life type memorial, but fundie style.. They claim miracles were worked through Matthew. I don't even.
https://matthewmanuelnel.wordpress.com/
The typical fundie stuff. He somehow created miracles just by being born a potato. I don't know how aware he was. With holoprosencephaly probably not much. And judging by this nightmarish care routine I hope the poor kid was as sentient as a desk lamp.
https://matthewmanuelnel.wordpress.com/matthews-care/
There is no cure for holoprosencephaly (HPE). Treatment is symptomatic and supportive.
We share below how we care for Matthew in the hopes that some of what we have figured out over the years might help someone else with similar issues.
CARETAKING
SLEEPING
We first had Matthew sleeping in his pram next to our bed with just an Angel Care monitor but soon graduated to a camping cot during the day in his own room and a wooden cot at the foot of our bed in our bedroom at night. Gadgets were added: pulse-ox monitor, suction machine, oxygen cylinder, oxygen machine, syringe pump.
When the risk of falling asleep from trying to do a shift with Matthew in our bed got too big, we moved to Matthew’s room for shifts where the “on duty” would be up and about to care for Matthew while the “off duty” would sleep on the single bed.
As Matthew’s care became more intense and Matthew got bigger, we packed up the camping cot and moved out the single bed to make space for a second hand hospital bed in Matthew’s room. But that meant that the “off duty” now slept alone back in our room. We did not cope well with being apart and we pretty much lived in Matthew’s room, leaving the rest of our huge house deserted.
So we converted our double garage into a big open plan Matthew’s room – an MICU – Matthew’s Intensive Care Unit. We downscaled and minimalised our belongings, sold our second vehicle, and moved out of the house and into our MICU. Our MICU pretty much looks like a high care hospital room, just with much more space and added perks of an en-suite bathroom and kitchen!
Here is a video link showing the evolution of our MICU over the years:
https://www.youtube.com/watch?v=ymdD9JTcKlk
IN CASES
Taking into account everything we have in the MICU, most of which needs to be taken with when we travel, or at least a more compact version thereof, you can understand that going anywhere with Matthew is a mission, not to mention the risk of him being exposed to a different uncontrolled environment where he can pick up bugs and get sick.
For the first few years our faithful Toyota double cab bakkie, Dora, took us everywhere with Matthew. Matthew started out in a car seat on the back seat next to mommy but it didn’t work well for him. So we then put a plank and mattress for him on the back seat where he could lie flat next to mommy. As he got bigger, we then took out the front passenger seat and made a bed for him, stretching from the front to the back so mommy could still sit next to him to care for him while daddy drove.
As we needed more medical equipment and Matthew got bigger, it got more cramped and difficult to care for Matthew in Dora. So we traded Dora in for Happy, our second hand Hyundai H1 bus. Happy also underwent a conversion process – we took out the single back passenger seat, turned the double back seats around and ratchetted a plank and mattress to the bottom. Both mommy and Matthew now have more space and are more comfortable!
If we go on a long trip with Matthew where we will be sleeping over, it takes at least 4 hours to pack. If it is just a few hours or a day trip, it takes at least 2 hours to pack. We have to take any possible medical emergencies into account and make sure we have the stuff to handle that.
As Matthew’s care has intensified and his condition has deteriorated, we only travel with him under absolute necessary circumstances. We have tried to arrange as many of his medical interventions and therapies to be done from home or via some sort of technology so as to minimalise travel and his risk of exposure. So it is highly unlikely that we would be visiting anyone anywhere anytime soon. BUT you are more than welcome to come visit us!
VISITING
Because travelling is such a mission, we prefer people to rather visit us at our house, when possible. We need to ensure that our guests are not sick before they visit. Matthew’s little body is already fighting so much, adding even the slightest infection can lead to hospital or worse …
CARE FOR THE CARETAKERS
We share below how we care for Matthew in the hopes that some of what we have figured out over the years might help someone else with similar issues.
CARETAKING
- Matthew requires 24/7 intense care. He cannot do anything for himself.
- Clinical management by a well-coordinated, multidisciplinary care team is paramount.
- We are very thankful for the medical professionals on our care team. We consult with them as and when necessary, but for the most part we try to do as much as we can ourselves at home and avoid hospitals as far as possible.
- For the first year, God blessed us with Erica, a retired PICU nurse, to assist us with Matthew’s care during the day, until we could cope on our own.
- During the day, Ryan works a 8am to 5pm job away from home. Veronica works flexi hours from home while taking care of Matthew, with Matthew’s Nanna assisting for a few hours during week days and in the event of an emergency.
- During the evening, Ryan and Veronica take shifts to care for Matthew, averaging 4 to 5 hours of sleep each.
- Intensity, duration and frequency: Matthew had up to 200 seizures a day at a stage. As we figured out various triggers which we could control, they have averaged out to between 50 and 100 a day, varying in intensity, duration and frequency. Each seizure lasts anywhere from 10 seconds to a minute. His record is 8 hours of seizures one after the other every few minutes when medications do not work.
- Types of seizures: He has partial (he remains conscious) tonic (muscles pull and stiffen) seizures which hit into clonic seizures (repetitive jerking movements) and eventually status epilepticus if we can’t get the seizure clusters stopped fast enough.
- What happens during a seizure: Besides the muscle contractions and repetitive jerking movements, he chokes, coughs, gags and vomits when seizing and often goes blue from lack of oxygen as he battles to clear his airway, so we have to be quick to suction and administer more oxygen, ambubag when necessary, keep him as cool, and pray.
- Seizure medications: Matthew was on 7 anti-convulsant medications at once at a stage, with two additional medications we tried that didn’t work. We have subsequently weaned him down to only 4 anti-convulsant medications. The medications don’t always work, especially when his sodium levels are too high or too low.
- Seizure triggers: Controlling seizure triggers is our first line of defence against the seizure monster
- DIET: A major seizure trigger culprit was his diet. As soon as we switched from tinned formulas and processed foods to pureed natural foods, the seizures decreased drastically. We did try the ketogenic diet but is unfortunately didn’t work for Matthew.
- PAIN AND DISCOMFORT: Anything that causes pain or discomfort triggers seizures (a dirty diaper, constipation, diarrhoea, a small sore, a cramp, a mosquito bite, coughing, vomiting etc.) so we always have lots of pain medications on hand and try to keep his as comfortable as possible.
- TEETH: Teething as well as losing milk teeth with permanent teeth pushing through seem to be Matthew’s crazy-driver! He goes totally bonkers whenever anything remotely related to his teeth is brewing.
- HEAT: Matthew battles to control his temperature with seizures triggered by too high temperatures. Air conditioners, fans with water spray bottles, ice packs and tepid baths are what we use to bring his temperature down.
- SODIUM: Matthew battles to control his sodium levels with seizures triggered by too low sodium as well as swinging between high and low sodium too fast.
- CHEMICALS: The chemicals in cleaning products and personal hygiene products trigger seizures so we either make our own cleaning products, soaps, shampoos etc or buy natural products.
- ALLERGIES AND INTOLERANCES: Food allergies and intolerances, air allergens like dust and mold etc trigger seizures. We stear clear on changes to his diet and make sure the MICU is as dust-and-mold-free as possible.
- Physical therapy: Matthew is non-mobile. To assist with spasicity, hypotonia, scoliosis etc we do various physical therapy exercises and stretches with him daily. Matthew’s buggy wheelchair and standing frame have been absolute necessities.
- Occupational therapy: We are not sure to what extent he can see, hear, smell or taste but he sure does react to touch – he really loves cuddles! Whatever stimulation we can give him to assist with his developmental delay, we do.
- Speech therapy:
- Communication: Matthew is non-verbal. We have our own way of communicating which is based very much on intuition although we have figured out a few patterns of different cries, snorts and facial expressions over the years which give us clues as to how Matthew might be feeling but it is most often still a guessing game and process of elimination to figure out what it bothering him.
- Swallowing: While we know he will never eat by mouth, helping him learn to swallow just his own saliva would be a huge help to prevent aspiration.
- Hydro therapy: Matthew absolutely loves a soak in the bath on his bath chair!
- Bed sores: We avoid bed sores by making sure that he does not lie in the same position for longer than 2 to 3 hours and we massage oils into the various pressure points that could potentially become bed sores.
- Family Hope Center (FHC): We attended a Parent Training Conference and Evaluation with FHC in 2017/2018 which has become a lifestyle for us, not just an integrative program to follow for Matthew. It has been life changing – for both us and Matthew. For more on FHC, visit their website at:
https://familyhopecenter.com/
- Oxygen:
- Matthew started out only needing breathing assistance when he was born but soon managed to breath on his own.
- As his seizures got worse, he started needing supplemental oxygen when seizing, then he needed it when sleeping too, which we could administer by aiming the oxygen tube in the general vicinity of his nose. Then he needed that supplemental oxygen more and more often.
- As his condition deteriorated, he needed a nasal cannula more often. And then he needed a nasal cannula permanently.
- In-between there have been many periods of needing to ambubag him.
- We started out with borrowed oxygen cylinders, then we got our own as his need increased and then we go home oxygen therapy approved by our medical aid so that we now have an oxygen concentrator in addition to backup oxygen cylinders.
- A recent addition to our breathing armoury is our Airvo2 highflow machine which administers warm humidified oxygen at a high flow via a special nasal cannula. Matthew uses the Airvo2 as and when needed so that we don’t have to ambubag him and rush to hospital when he battles to breath. We usually switch to the Airvo2 when his oxygen needs are more than 2LPM.
- The liters of oxygen per minute that he needs vary between 2LPM to 8LPM from the oxygen concentrator and sometimes even more during seizures or if he is having a bad bout of respiratory distress, then we switch over to the oxygen cylinders which can give up to 25LPM.
- Aspiration: Because he battles to swallow and breathe, he often aspirates on vomit or even his own saliva. This leads to high risk for frequent illnesses. So we do the following often to keep the risk as low as possible:
- Nebulise – To keep secretions thin.
- Chest percussion – To keep secretions loose.
- Suction – Any excess secretions or vomit need to be suctioned to avoid aspiration and choking as he cannot swallow.
- Forgetting to breath: Matthew often just “forgets to breathe”! You could call it central sleep apnoea but he does it when awake too. We have to stimulate him to take a deep breath then when he does that by lifting his chin or changing his position momentarily. So he really needs to be watched with hawk eyes.
- Things that exacerbate breathing difficulty:
- Increased seizure activity (due to pain, discomfort, illness, teeth issues, heat, low sodium levels, swinging too fast between high and low sodium levels and other neurological causes) necessitate the use of additional anti-convulsants which then cause respiratory depression.
- High sodium levels make him lethargic, breathing shallow and his saturation levels dip too low.
- Illness causes increased stress on lung function so he battles to maintain stable saturation levels.
- Matthew battles to recover after a severe coughing bout to get gunk out or vomiting so needs additional assistance with breathing then.
- When he has bouts of central sleep apnoea.
- Monitoring:
- We started out using an Angel Care monitor when he was asleep.
- We very soon upgraded to a finger pulse-ox monitor which we could use periodically if we suspected he was desaturating.
- And very shortly thereafter we needed a full time neonate wrap around sensor with portable pulse-ox monitor which alarms loudly and beeps continuously at different rates and pitches so that we know where his saturation levels and pulse rate are at all times. This allows us to react quickly when Matthew needs extra oxygen etc.
- While we are absolutely dependent on the monitor, we have also learned to treat the patient and not the machine. So when the monitor starts alarming, we have a little acronym we follow before we start panicking: PASSOP (Probe And Sensor, Suction, Oxygen , Position)
- WHY does Matthew have a second mouth?:
Matthew cannot swallow without choking and aspirating so he is fed 100% via a feeding tube. All food, fluid and medications are administered via his feeding tube – his second mouth:- For the first year, Matthew was fed using an orogastric tube – a tube inserted in his mouth down his throat and into his tummy. He coughed and vomited the orogastric tube out often, up to 10 times a day, and we had to re-insert it and check placement every time.
- In March 2015 we had a gastrostomy done and a PEG-tube placed (a long floppy tube inserted directly into his stomach through a hole called a stoma).
- A month later we replaced the PEG-tube with a low profile mic-key button (a short small button-like tube placed into the stoma).
- Matthew’s stoma has to be kept clean on a regular basis to avoid infection and his mic-key button needs to be replaced every 3 months via out-patient procedure at Nelspruit MediClinic.
- Syringes, extension tubes, feeding tubes etc need to be cleaned regularly.
- WHAT does Matthew eat?:
- Thanks to Anne, Emily and some other awesome mommies who blessed us with expressed breast milk during Veronica’s stress-induced shortage, Matthew was able to benefit from that white gold (aka breastmilk) for the first couple of months and again for a while after we stopped the ketogenic diet.
- We went through a whole bunch of tinned formulas but even the most hypoallergenic tinned formula did not work for Matthew.
- We also tried the ketogenic diet but it sadly also did not work for Matthew.
- We have been through a lot of trial and error to figure out Matthew’s allergies and intolerances – he has many allergies and intolerances!
- We now make batches of various steamed veggies, blended, frozen in ice trays and stored in containers in the freezer. We take the ice blocks out to thaw a few hours before his meal and blend in some powders and oils to make a kind of a high protein veggie soup.
- The fluid he gets is just plain water and some ginger-lemon tea that we make ourselves as an electrolyte drink.
- HOW does Matthew eat?:
- Matthew is volume sensitive which means we cannot feed him too much or too fast at a time, otherwise he will vomit.
- We started out hand-feeding using 20ml syringes which we pushed very slowly through his feeding tube.
- We later got a syringe pump to push his food through his feeding tube in 50ml syringes at a slow controlled rate.
- His mic-key button is connected to a mic-key extension tube, which is connected to an Fisher&Paykel 2m neopuff supply line tube, which is connected to a 50ml catheter tip syringe, which is positioned in the syringe pump, which is attached to our old music stand next to his bed.
- WHEN does Matthew eat?:
- 95% of his feeding happens when he is asleep, usually induced from seizure medications.
- Due to his poor gastric emptying and other gut issues, we have found a 12 hour cycle to be the best for Matthew at this stage:
- Feed can take up to 4 hours depending on when he wakes up
- No food or fluid for next 4 hours to allow for digestion, vent through mickey button to check no residual
- Fluids at 50ml every 30min for next 3 hours
- Break for 1 hour before starting feed, vent through mickey button to check no residual
- He does not indicate thirst or hunger, so we have to use other indicators to let us know if he needs more/less fluid or food.
- WHERE does Matthew eat?:
- On his hospital bed, positioned on his left side, at an inclined angle.
- Due to hypothalamic and pituitary dysfunction, Matthew needs synthetic hormones to keep his various bodily functions as operational as possible.
- Antidiuretic Hormone (ADH): We have tried to use DDAVP (vasopressin) in the past but Matthew is so sensitive to the synthetic hormone that the minutest dose causes him to retain his urine way too long and swing him to too low sodium. We therefore control the ADH imbalances using free water and salt.
- Adrenocorticotropic hormone (ACTH): Matthew needs Covocort (hydrocortisol) to assist here. We often have to stress dose him on the Covocort during periods of illness, seizures and urine retention/low sodium.
- Growth hormone (GH): We have decided not to supplement this hormone yet as Matthew seems to be doing fine so far without it.
- Gondadotropic hormones: Matthew has undescended testicles and a very small penis. We have decided not to supplement this hormone yet as he seems to be doing fine so far without it.
- Thyroid stimulating hormone (TSH): Matthew needs Eltroxin (levothyroxine) as his thyroid is not active at all.
- We do try natural remedies as far as possible but have found most to be ineffective.
- Matthew battles to regulate his body temperature, so we have to assist externally.
- He also tends to be extremely different temperatures on different parts of his body all at the same time.
- Air conditioners which can make both hot and cold are an essential for Matthew, both at home and when we travel, as that helps to regulate his body temperature.
- When he is too hot, he seizes and vomits. We then sponge him down with lukewarm water and blow a fan on him.
- When he is too cold, his heart rate and blood pressure drop and he becomes unresponsive. We then use thick fluffy blankets and hot water bottles watched with hawk eyes.
- Matthew has GERD (gastroesophageal reflux) and vomits often.
- We go through lots of towelling nappies, called “spoeg-doeke” in Afrikaans, which we have found the most effective to catch reflux and vomit.
- Things that aggravate reflux and vomit:
- Low sodium levels
- Urine retention
- High sodium levels
- Constipation
- Secretions
- Seizures
- Allergens and food intolerances
- Things we have found helpful to reduce reflux and vomit:
- Nissen fundoplication: We had a nissen fundoplication done in March 2015 together with his gastrostomy to try stop his vomiting. Sadly the nissen fundoplication came undone after a month due to the pressure caused by his seizures and gagging reflex.
- Diet: Diet has made a huge difference in the frequency and severity of his reflux and vomiting episodes. We have found tinned formulas and any form of processed foods to cause the worst amount of reflux and vomiting. Natural foods, as unprocessed as possible, seem to cause the least.
- Positioning: We have devised a contraption to position him on his hospital bed at a constant inclined angle using a plank, rolled up blanked and velcro. Feeding on his left side is imperative.
- Movement: We don’t move him around as far as possible for at least an hour after feeding.
- Suctioning and nebulising: We keep his mouth and airways clear of secretions, which tend to make him nauseous, by frequent suctioning and nebulising with saline.
- Matthew has a compromised gut due to various factors – medications, poor gastric emptying, constant electrolyte imbalances due to endocrine issues etc.
- He varies between constipation and diarrhoea. Low sodium levels and anything teeth-related tend to result in diarrhoea. High sodium levels tend to result in constipation. Changing anything in his diet causes an upset stomach.
- Bum rashes and haemorrhoids are often consequences of the diarrhoea and constipation.
- He battles to poop on his own so we have to help him by using a glycerine suppository to stimulate a bowel movement. An enema is a last resort.
- A steamy-warm well-formed turd smiling back at us when opening a suspect diaper is the cause for huge celebration in our MICU! We are very proud parents when Matthew poops on his own!
- SODIUM FLUCTUATION:
- CENTRAL DIABETES INSIPIDUS (DI): He often pees too much due to deficiency of antidiuretic hormone (ADH). This leads to dehydration and high sodium levels.
- SYDROME OF INAPPROPRIATE ADH SECRETION (SIADH): He often retains too much urine. This leads to swelling and low sodium levels.
- CONTROL: There is no pattern and we have not yet managed to find the triggers that cause the fluctuations. We control his sodium levels as far as possible clinically but often our usual indicators are masked by seizure triggers eg infection, teeth pain etc so we then have to have blood drawn to figure out where his sodium is so that we can treat it appropriately.
- TREATMENT:
- HIGH SODIUM: We reduce his salt intake and increase free water.
- LOW SODIUM: We increase his salt intake and decrease free water. If really that doesn’t work then we stress dose on cortisol to assist with diuresis and sodium retention. No natural diuretics work.
- RECORDING:
- We weigh every diaper.
- We have a recording system to keep track of his input verus output on a daily basis which helps us know whether he is retaining urine (low sodium, SIADH) or dumping urine (high sodium, DI).
- We weigh Matthew every day as he can pick up a whole kg in water weight over 24 hours when retaining urine.
- We test his urine daily, including the taste test!
- AFTERMATH:
- When he dumps his urine, he pees up such a storm through his diaper that his shirt and sheets are soaked, often.
- When he retains his urine, we go through lots of towelling nappies due to the aggravated vomits.
- NEUROGENIC BLADDER:
- Sometimes the pee in his bladder can’t exit and his bladder swells.
- We rushed to hospital once as we couldn’t get him to pee and his bladder just got bigger and bigger. They ended up doing a suprapubic catheter in the ER and we were admitted to have a dorsal slit operation done as his foreskin had not retracted so he could not be catheterised.
- Thanks to the operation, now we can catheterise him at home easily when his bladder doesn’t release the pee. This usually happens during high sodium episodes when he dumps urine.
SLEEPING
- Matthew has no pattern of sleep and wake
- He very seldom sleeps without the assistance of anti-epileptic medications.
- Natural sleep aids do not work.
- He only sleeps on average between 1 to 2 hours at a time.
- He usually wakes from sleep with a seizure. We call it his “wake-up-shake-up”!
- He has to be monitored while asleep.
- He can desaturate in his sleep as the anti-epileptic medications which induce the sleep are respiratory depressants.
- Cleft lip and absent pre-maxillae:
- We decided not to have his cleft lip fixed. Some motivations for repairing a cleft would be for feeding, speech and cosmetic reasons. Because of Matthew’s neurological issues, he would not be able to eat by mouth or speak even if we repaired his cleft, and cosmetically we think he looks perfect the way he is.
- He cannot suck a dummy by himself due to his cleft lip so on the odd occasion that he does want to suck a dummy (usually when his teeth are acting up), we have to hold the dummy into his mouth for him.
- Flat face, close set protruding eyes and broad flat single-nostril nose:
- Makes for easy breathing when face-planting!
- Nasal cannulas are challenging and often annoy him, necessitating creativity and modification to keep him as comfortable as possible but still have it be effective.
- Small head:
- His head is very, very small and peanut shaped.
- He absolutely loves head rubs and hair brushes!
- We have designed a system to record pretty much everything a nurse would record of a patient in a high-care or intensive-care hospital room. We call it “Matthew’s Book”.
- We literally have a shift change-over like would happen in hospital and Matthew’s book is imperative to ensure continuity and that we don’t duplicate medications or therapies etc between shifts.
- We record: medications, sleep/wake times and duration, food volume and times, fluid volume and times, seizures, pee/poo outputs, vomits, changes in oxygen requirements and other vitals, therapy schedules etc.
We first had Matthew sleeping in his pram next to our bed with just an Angel Care monitor but soon graduated to a camping cot during the day in his own room and a wooden cot at the foot of our bed in our bedroom at night. Gadgets were added: pulse-ox monitor, suction machine, oxygen cylinder, oxygen machine, syringe pump.
When the risk of falling asleep from trying to do a shift with Matthew in our bed got too big, we moved to Matthew’s room for shifts where the “on duty” would be up and about to care for Matthew while the “off duty” would sleep on the single bed.
As Matthew’s care became more intense and Matthew got bigger, we packed up the camping cot and moved out the single bed to make space for a second hand hospital bed in Matthew’s room. But that meant that the “off duty” now slept alone back in our room. We did not cope well with being apart and we pretty much lived in Matthew’s room, leaving the rest of our huge house deserted.
So we converted our double garage into a big open plan Matthew’s room – an MICU – Matthew’s Intensive Care Unit. We downscaled and minimalised our belongings, sold our second vehicle, and moved out of the house and into our MICU. Our MICU pretty much looks like a high care hospital room, just with much more space and added perks of an en-suite bathroom and kitchen!
Here is a video link showing the evolution of our MICU over the years:
https://www.youtube.com/watch?v=ymdD9JTcKlk
IN CASES
- Power outs: We cannot go without electricity due to all the medical equipment that Matthew needs to stay alive. We have inverter batteries which can run some of the medical equipment during a short power out together with oxygen cylinders. If the power out is longer, we have to run the generator.
- Water outs: We cannot go without water as Matthew uses a lot of linen, shirts and towelling nappies etc. His hydrotherapy is also very important. We have a backup water tank supply system.
- Equipment breakages: We rely on every piece of medical equipment to keep Matthew alive. We have backups of most equipment. We still short some backups which we are working on.
- Medication shortages: Matthew’s medications are chronic, life-saving. Medication shortages are scary! Very scary! We have been through two major shortages so far. God’s grace is what carried us through!
- Fuel shortages: We need petrol to run the generator, so if both power and fuel are out, we have a huge problem. We do keep backup fuel. The only option if fuel and power run out is to rush to hospital with him so that we can use hospital equipment and oxygen, at great risk of him being exposed to bacteria and viruses. We pray that we will never have to live through something like that.
- Caretaker down: Matthew relies on his caretakers (daddy, mommy and nanna) for everything, to stay alive! We cannot afford to have a caretaker down. If it does happen, the other caretakers take strain. We are working on building up an emergency team but this takes time. We try to take care of ourselves as much as possible to avoid “breakages”!
Taking into account everything we have in the MICU, most of which needs to be taken with when we travel, or at least a more compact version thereof, you can understand that going anywhere with Matthew is a mission, not to mention the risk of him being exposed to a different uncontrolled environment where he can pick up bugs and get sick.
For the first few years our faithful Toyota double cab bakkie, Dora, took us everywhere with Matthew. Matthew started out in a car seat on the back seat next to mommy but it didn’t work well for him. So we then put a plank and mattress for him on the back seat where he could lie flat next to mommy. As he got bigger, we then took out the front passenger seat and made a bed for him, stretching from the front to the back so mommy could still sit next to him to care for him while daddy drove.
As we needed more medical equipment and Matthew got bigger, it got more cramped and difficult to care for Matthew in Dora. So we traded Dora in for Happy, our second hand Hyundai H1 bus. Happy also underwent a conversion process – we took out the single back passenger seat, turned the double back seats around and ratchetted a plank and mattress to the bottom. Both mommy and Matthew now have more space and are more comfortable!
If we go on a long trip with Matthew where we will be sleeping over, it takes at least 4 hours to pack. If it is just a few hours or a day trip, it takes at least 2 hours to pack. We have to take any possible medical emergencies into account and make sure we have the stuff to handle that.
As Matthew’s care has intensified and his condition has deteriorated, we only travel with him under absolute necessary circumstances. We have tried to arrange as many of his medical interventions and therapies to be done from home or via some sort of technology so as to minimalise travel and his risk of exposure. So it is highly unlikely that we would be visiting anyone anywhere anytime soon. BUT you are more than welcome to come visit us!
VISITING
Because travelling is such a mission, we prefer people to rather visit us at our house, when possible. We need to ensure that our guests are not sick before they visit. Matthew’s little body is already fighting so much, adding even the slightest infection can lead to hospital or worse …
CARE FOR THE CARETAKERS
- Conking in is not on the cards: If the caretakers conk in, there will be no one to take care of Matthew. So it is imperative that we look after the caretakers!
- Physically: Getting the required amount of sleep is not possible in our current circumstances. But we do try to eat and drink as healthy as possible, live as simply and slowly as possible, and exercise by doing all our house and garden work ourselves as we do not have domestic servants.
- Emotionally: We take turns to afford each other time somewhere somehow to withdraw into a “nothing box”, or at least an “as little as possible box” to switch off for a bit.
- Spiritually: We have had our fair share of shaking fist at God. But ultimately we would rather tackle this journey with God than without him!
- Marriage: Marriage without kids is difficult. Marriage with kids is even more challenging. Marriage with special needs kids is in a league of its own. And ours is no exception. Issues are often easily left unresolved because fighting for Matthew’s life is a greater issue at any point in time. We have to dig deep and fight hard to use an “eye of the storm” when Matthew is in his “happy place”, which is not often, to pick up those unresolved issues and work through them. We also have learned to be creative and do what works for us, against what the “norm” is.
- Community: Friends and family surround us with support in many different ways. It was and still is difficult to receive, but we have had to. We needed to allow our community to be part of our journey. And our community had to learn how to be part of our journey. It is beautiful.
- Brain Child Fund (BCF): A turning point in the part of our journey where we were “going nowhere slowly” is when our paths crossed with Brain Child Fund. We were taught how to create the support we need as a special needs family, cultivating emotional, physical, spiritual and financial support teams around us. For more on BCF, visit their website at: brainchildfund.org
Some months after Matthew died his parents had a Praise Party. I guess this is a celebration of life type memorial, but fundie style.. They claim miracles were worked through Matthew. I don't even.
discombobulated
kiwifarms.net
- Joined
- May 6, 2021
- Joined
- Jun 13, 2016
I’m late on this but you are probably aware of the studies done on Romanian orphans, because it’s pretty much one of the only comprehensive ones ever done.
They found that even a shitty foster family was superior to a child being raised in an institution. Indifference and lack of attachment/ security is apparently the worst for children. This applies to children from 0 to eight, during crucial developmental years, not sure how it shakes out with older kids.
As fucked up as foster families can be it’s still better than institution/ orphanages. Even more depressing kids who’s parents died cope better than kids who’s parents offloaded them. Kids can understand death, but not mom and dad abandoning them.
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Allo Vera
kiwifarms.net
- Joined
- Oct 6, 2019
Funny you should mention mosaicism because I saw this on Tiktok yesterday. One of the problems with IVF and PGD: knowing too much. A story in three screenshots.
Also saw this. Tiktok really is like a circus sideshow of disabled babies.
- Joined
- Feb 20, 2021
Matthew Nel is the kid who would regularly die and be resuscitated by his parents, like full-on CPR on a regular basis. They completely lost the plot with him and I am so grateful he's been released from his fleshprison.
(A family member of mine was institutionalized as an infant in a war-torn country. She/he was adopted at 5, and really turned out incredibly well all things considered, but had lifelong attachment irregularities.)
I'm familiar with the study, at least in passing. I just wonder how the findings would hold up for international adoptees with special needs whose parents already have multiple disabled children at home.
(A family member of mine was institutionalized as an infant in a war-torn country. She/he was adopted at 5, and really turned out incredibly well all things considered, but had lifelong attachment irregularities.)
- Joined
- Sep 23, 2016
Good God, seven years of everything- time, money, resources, life- wasted on keeping that thing alive just a little while longer. If he had just died shortly after birth his parents could have moved on and done so much more. Maybe had another kid, or just lived their lives. Worked like normal people accuring success and contributing to society, enjoyed hobbies and friends and other family, traveled and experienced new things. Instead everything single second of those seven years was thrown into the void of a barely-sentient potato that vomited constantly and alternated between not peeing at all and peeing so much he soaked everything around him. Weighing his shits and tasteing his fucking urine. And for what? To be smug about being morally superior and a minor amount of attention. Absolute arrogant lunacy.
- Joined
- May 25, 2013
If there can be said one thing about Mathews parents tho, it's that at least they didn't have any more kids after they decided on a life of potato farming. So it's not like a non-spud kid ended up playing second fiddle to a tater like in other families ITT.
- Joined
- Feb 24, 2019
Didn't know where else to post it i follow a disability ig and the mother just something, this is more filters then i've ever seen she looks like shes from whoville.
Allo Vera
kiwifarms.net
- Joined
- Oct 6, 2019
I follow this account and that’s no filter, she’s just wearing some absolutely terrible fake lashes. Really, really bad.
- Joined
- Oct 4, 2019
That and bad genetics. And maybe some bulimia cheeks going on there too..
- Joined
- Sep 24, 2019
They were never exactly an academic source, but I used to enjoy watching Six Blind Kid's videos specifically because that was their subject matter. Plus it was nice to see some parents who seemed to care about preserving their disabled children's dignity when posting them on a public platform.
- Joined
- Feb 24, 2019
And the minute people started creeping on their children they shut down and stopped. Money didn't get in the way of their children's safety as it seems to in many vloggers.
Idk If she has been discussed here but there's this influencer wheelchair rapunzel,being severely disabled getting knocked up and then raging at ppl who question her ability to tc of the baby ...maybe I'm just sperging but it's quite bold to do that When u can't wipe your own ass and know perfectly he will be wiping two asses from now on p. S how do i upload vids?
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- Joined
- Apr 8, 2020
She actually has a new thread in PG: https://kiwifarms.net/threads/alex-dacy-alex-dzimtowicz-wheelchair-rapunzel.130866/
- Joined
- Feb 24, 2019
Imagine your in a PICU with your seriously ill child and suddenly another person decides its disco time:
- Joined
- Mar 11, 2017
Wonder if the kid has seizures. I remember Jaxson Strong's mom would intentionally cause seizures with toys that had flashing lights so she could claim he was playing and reacting to stuff.
- Joined
- Sep 17, 2021
- Joined
- Apr 20, 2017
Rate me late if I deserve it, but does this guy have his own thread here yet? He reeks of predator.