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Part Two. Facebook Posts. Diagnosis to End 2011

Updated: Mar 10, 2020

At this point I couldn’t hide my despair any longer and I came off Facebook. I wasn’t eating or sleeping, I stopped seeing my friends, I was in a deep depression and I cried all day. The specialist we saw had suggested possible cerebral palsy but in the meantime he ordered blood tests, urine screens and a brain scan. Finally someone was listening but the anger at how so many medical professionals had continued to write me off as paranoid was overwhelming. Alice was now very very ill. She was struggling to swallow, vomited up every feed in its entirety, she appeared to be blind and deaf, she squealed like a cat in pain and made no normal baby sounds. She twitched and jerked even in her endless sleep and her arms and legs would flay all around unless she was swaddled tightly. Her head was contorted to one side like she couldn’t stop looking over her shoulder, she hated being touched and she thrashed and wriggled for hours if we put her in her cot. We now know this was unrelenting, continuous seizures in many forms.

The person Id been for 39 years had slowly been dying in recent months but this was the point “old me” was killed off completely.

As you will see in the next few posts, we were told our son likely also had the condition but was yet to show signs. We have since learnt this is absolutely wrong information. We should never have been advised of that or had to put two year old George through blood draws and lumbar punches. Nor should Greg and I of had to live through several days assuming both our children would die while we awaited results. This was another example of the many many medical fuck ups so far and to follow.


19th October 2011

Would like to ask every single person on Facebook who sees this to think of our beautiful Alice and George. We need more luck and love than anyone can imagine. I promise I will explain fully later but right now we just need love, luck, best wishes and a big ass fucking miracle.

Xxxxxxxxxxxxxxxxxxxxx


21st October 2011

Thank you so much for all your thoughts and comments, it seems we have brought about a minor miracle in a shit storm. George is almost certainly free from the horrific metabolic disease that Alice has been diagnosed with. Our beautiful angel will not make it but we almost certainly get to keep George. Please keep us in your thoughts as all these messages and comments are keeping us going and making a huge difference. Mum has arrived from UK today, so that is a massive relief xxxxxx


23rd October 2011

I am so proud of my little girl. In 13 weeks of life she has brought people together across the world, caused countless random acts of kindness, made people hold their children extra tight, put hundreds of lives in perspective, taught us not to sweat the small stuff and made a lot of people stop and take a look at themselves. She has done more than I have in 40 years. She has made a small improvement but there is no hope of survival beyond a few months at worst and years at most, so she still needs prayers.


25th October 2011

So Alice has not had a seizure in over 24 hours and she smiled at me for the first time EVER yesterday. She is still not good and will never be quite right but she is responding to drugs and we should be able to get her home soon for however long that may be. George gets his final results back today to make sure he doesn't have it too. Please cross everything you can cross xxxx

4pm

George is fine!!!!!!!! Absolutely no chance he has it!!!!!!!! My boy is normal (well as normal as can be expected with George). Oh my god think I might vomit. Thank you thank you thank you to anyone who is following this and wishing for us. Right troops, all energy now needs to be channeled towards Alice xxxxxx


26th October 2011

Grandma doing the night shift tonight so home with Greg and George. Alice doing amazingly well and we can hopefully get her home on Friday once I am fully trained on administering countless drugs and tube feeding. Little angel is still terribly ill and the condition cannot be cured but it looks like we may have her for a bit yet. Unless of course Alice has other plans and I will just have to have faith that she knows what she's up to.


28th October 2011

Phew me and Alice are home. She is full of smiles and drugs. I am practically a qualified nurse by now. Tomorrow I start training Greg in multiple drug administration and gastro nasal feeding. Keep everything crossed that the drugs continue to work and Alice at least gets to stick around long enough for us to get to know her a wee bit more.


29 October 2011

I am just amazed at the kindness of family, friends, neighbours, colleagues, acquaintances and even strangers. If only Alice knew what she was bringing out in people. She is currently sleeping off a good dose of clonazepam so I'll try and explain it to her when she comes back to earth.




1st November 2011

I have been trying so hard to thank everyone personally for all the messages, cards, gifts, meals cooked, babysitting assistance, errand running, text messaging, hospital visits, teary hugs, parcels of food etc etc and it has simply got away with me. Now I am home and its bloody chaos I am struggling to get round to you all and I'm sorry. So to everyone who did anything whether you "liked" a comment, made a wish, sent a card or e mail or even just sat and cried with me, THANK YOU THANK YOU THANK YOU I am a different person now and all of you kept me going. Alice will hear about all of you one day xxxx


2nd November 2011

I'm acutely aware that Kiwis seem to think Georges liking for socks and sandals at daycare is rather quirky and British. I would like to point out I have NO say in the matter whatsoever and George is not British, he was born her in New Zealand. Appropriate footwear is suggested each morning and everyday I am over ruled.


3rd November 2011

Fast realising I can't keep everyone happy or do everything that needs doing. Looks like someone will always be pissed at me from now on. If anyone knows how to clone myself or create a 29 hour day I would love to hear from you.


4th November 2011

I didn't think my life could be put in any more perspective than it has been these last few weeks, but it has. I have found on FB hundreds of women with children with NKH. Some only lived for days, some weeks and some months. Some have made it into years and are anything from profoundly disabled to moderately so. I realise Alice has so far got away quite lightly and these women just amaze me. To cope with losing a child so early on or to deal with a child severely effected by this hideous condition just makes me realise my situation is not that bad. If Alice having this raises some awareness for all these kids then I'm sure she'd be glad to help.

However, its also apparent that to me that now Alice has been diagnosed and is on the correct medications, she seems almost like a normal 3 month old. Is this is denial disguising itself as hope?


5th November 2011

Oh boy. I really am gonna have to get my head around expecting nothing and being prepared for anything. I just get so frustrated at the lack of answers but the more research I do the more I am having to accept there simply arn't any to give. This disease is damn rare and so poorly documented. Learning fast that other NKH parents have the answers, not the doctors.


6th November 2011

Is having a holy f*cking crap moment.


8th November 2011

So as the proud new owner of a "special needs" child, I would like to know why my non special needs child requires all the fricking attention!!!! Alice sleeps through the night, smiles, coos quietly and is an angel (one that needs a lot of drugs admittedly). George wakes all bloody night, refuses to co operate in anything unless bribed with marshmallows, throws anything he can lift and has now taken to pulling me to the ground and lying on top of me to stop me leaving the room. Thinking of getting a nasal tube like Alice for my gin.


9th November 2011

As I sit pouring milk through Alices nasal tube and I watch her grow plumper by the day, I can't help but feel a little like I am making foie gras.


10th November 2011

With Alices recent weight gain I have come to the sad conclusion that she really can't pull off skinny jeans. Not sure whether to tell her or not as she has enough to deal with lately. Perhaps a nice boot cut to even out her silhouette is called for.

5pm

Back from the doctors for 5mins with George & Alice decides to start choking. Now in Wellington hospital for the night. Man this is a crazy way 2 live!


11th November 2011

So I have woken up in hospital with what appears to be flu. George at home sick with a raging temp & Alice is ok but still not herself. If anyone else out there would like to shit on me from an enormous height, please feel free to do so.

7pm

Would like to award this evenings nurse 10 out of 10 for facial hair.



12th November 2011

Home from hospital and so far so good. Alice has picked up Bronchialitis from George but is home unless her breathing goes down hill. She is now waiting for a date to have a stomach peg fitted so we can loose the NG tube and see her beautiful face properly again. Oh and George can now say "winkle". He still can't say "Mummy" but he can at least address his own penis.


13th November 2011

Back in hospital again. I am half expecting the nurses to say "the usual room madame"? No need to panic though Alice just struggling with her breathing but they say she is doing no worse than many normal babies with this bug.


14th November 2011

Rough night for Alice. Now on oxygen and the illness has set off her seizures again a wee bit but all in all she is doing well. They tell me apart from the fits she is coping like any other child so as always she is just getting on with things and concentrating on being pretty.


15th November 2011

Evening news from Wellington General Hospital is that Alices temp shot up 40 degrees and now has RSV, but just as she had as all crapping ourselves, she seems to be coming right. Hopefully we are now over the worst and we can get home soon. Hope to see her chubby little face smiling again soon.

12am

Midnight in Wellington General and its all going to tits. Alice suddenly not coping well at all. Sorry to call on you all again but happy vibes, goodwishes, healing thoughts, prayers etc etc are all required. Please send our way xxxx


16th November 2011

One lumbar punch, two blood tests, one iv line and precautionary antibiotics, one chest xray, three seizures, two vomits and four hours sleep for Mummy and things are calming down. Poss now worsened to pneumonia but most likely just the RSV virus doing its thing and her temp got so high it set off seizures and vomiting. They still tell me RSV puts healthy kids in ICU so she is doing well considering. This has no connection to her NKH this is pure unadulterated bad fucking luck!!!


17th November 2011

Alice is slightly better. No seizures or vomits but still coughing like she has 20 a day habit. Which is ironic as she is only a social smoker normally. Please keep stuff crossed as she is till on oxygen and very unhappy. Oh gotta go, she needs me to pop out and get her 20 Marlborough Lights.

Would like to clarify that neither myself or my 4 month old daughter actually smoke. Nor does Alice drink wine. Her only vices right now are large doses of benzodiazipines, a halluncaneginic called dextromethophan and few other cheeky meds with her milk at bedtime.


18th November 2011

Alice off oxygen and producing a few good gummy smiles. All being well she can go home this evening. Think I have upset the specialist by asking him to withdraw one of her drugs but I suspect I may offend and upset him a few times yet. Obviously if she takes a turn for the worst I will post pictures of me eating my words with a large slice of "humble pie" and a dollop of "should of kept my nose out" cream.


19th November 2011

Whoop whoop we are home. She is full of smiles, cooing non stop and looking gorgeous. No adverse effects from the drug withdrawal yet but its early days so lets just hope she doesnt go crazy on us in the night!


20th September 2011

Dammit! 8pm on Sunday night and Alice has pulled out her nasal tube and community nurse not picking up. Oh and i have a sinus infection and possibly glandular fever. I so want to get back to my old witty carefree updates but frankly everything is utterly shitty right now. FARK FARK and thrice FARK!!!!


21st November 2011

Had to go to the benefits office to sort Alices disability entitlements this morning. If the shame of claiming benefits isn't enough, the threat of catching an STD from the seats, developing an addiction to crystal meth just by breathing the air and the overwhelming nausea from the smell of sweaty crevices and unbrushed teeth certainly was. Is there a law somewhere that says if you are unemployed you are not allowed a pedicure? Also if you are so poor you need assistance how can you afford to eat so much fricking food and smoke so many fags??? Off to wash with bleach now.


22nd November 2011

How the hell Margaret Thatcher ran a country on this much sleep is beyond me. I have my pj bottoms on backwards and my eyes appear to have welded together in the night. I don't think I could even spell my name right now let alone win a war, fight the miners and still have time for a daily wash and blow dry.


23rd November 2011

With the smell being emitted from Alices bedroom, I am unsure if she is in fact sleeping or if she has anethetised herself from methane fumes.


25th November 2011

We have devised a “nutty” scale to gauge Alices craziness. Snickers is 25% nuts. Scroggin is 50% nuts. Peanut satay is 98% nuts. Today Alice is has had a Peanut Satay day.


26th November 2011

Would like to know at what point in the evening George and Alice sit down to arrange which one of them is going to keep us awake that night. There is some sort of tag team system going to ensure they get regular full nights and we don't.


26th November 2011

Never, I repeat NEVER let your husband cut your sons hair. Edmund Blackadder anyone?


28th November 2011

With every day Alices improvements amaze me and her smiles make me so happy, but I will always try to remember other NKH kids are not so lucky. The mothers of these children are so brave and courageous I am in awe of them. Alice could go down hill at any time and just because she is doing well now does not mean she will live any longer than any other NKH child but I will never forget that even at 5 months old I have 5 months more of my child than many other Mums. I never thought I would be grateful for this situation but after nearly 40 years my life is now totally in perspective. Thank you Alice xxx


29th November 2011

Bloody marvelous, now my son will only call me "Papa". I have never even taught him Papa. If he doesn't call me "Mummy" soon I am changing my name to Big Winkle as at least he can say that.


30th November 2011

Note to self. Child with seizure disorder and fluorescent airport lighting are a recipe for disaster. Sorry Alice, rookie mistake when waving off Grandma at the airport. I'm afraid, but I'm learning as fast as I can.


1st December 2011

After 2 complete nights rest, Alice and George have once again conspired to turn me insane from lack of sleep. Three nightmares for George then I finally relented and took him in our bed for a night of being kicked in the back, fingers in my ears and endless requests for "war-taaa". And Alice has inconsiderately decided to catch a cold so I had to calm her every few hours. So we have a nasal tube dripping with snot.. As always though Alice has decided the best approach is to laugh and grin through it. I however will be only talking in swear words today, crying a lot and generally behaving in an unhinged manner.


2nd December 2011

My life gets weirder by the day. Last night my husband decides to fit a nasal tube on himself so he can appreciate what Alice goes through. Needless to say it curled up in his throat, came out his mouth, he nearly vomited on the sofa and that was the end of that. And today Georges unnatural interest in yellow rubber gloves (he wears one ala Michael Jackson), is now a full blown fetish. Not only does he wear one but he insists I serve his breakfast in them too. Looks like we are off to daycare with my son in rubber gloves once again. Oh the humiliation.


3rd December 2011

Oh for gods sake!!!! Husband has had a large beer and a bottle of wine and he's trying the nasal tube again.


4th December 2011

Wish I had a PHD in childhood metabolic conditions. If I did I might actually understand half the b*llocks I have to absorb these days. Does Amozon do a "Dummies Guide to Devastating Metabolic Disorders in Very Cute Children"?


6th December 2011

George is in bed with a rubber glove and a spatula. These were his bedtime requests. I suggested he take Buzz Lightyear or perhaps Special Agent Oso, but no a rubber glove and a kitchen spatula was what he required. I am now drinking wine and wondering which of my children I need to be more worried about.


7th December 2011

Am rather aware that loads of people ask how Alice is and how me, Greg and George are coping and so many of you I never reply to. I try but I never seem to have time to reply to everyone. Each person that asks I am really grateful for your interest and I love that you all care so much but please don't think I am ignoring you or worse still that I am offended that you ask. Alice is doing really well. She is a little crazy and she has a short life expectancy and she will never be "normal" but she is bloody happy and so far seems to be doing way better than we were told to ever expect. If anyone is not bothered by Alices condition, its Alice. Me and Greg are really well considering and not nearly as fragile as people think. Our sense of humour has remained firmly in tact as has our ability to take the p*ss out of each other and our children. George is not so good however and has sought solice in rubber gloves and kitchen utensils and has taken to faking injuries to get my attention.

We move into our new house tomorrow as our old property was split onto 3 levels and simply isnt going to work with what will be a severely disabled and most likely immobile child.


9th December 2011

Alices hospital check up went super well today. She has grown 3cm and gained 2lbs so no wonder she is busting out of her skinny jeans. Some of her odd behaviour might not be seizures after all and just an inability to control her diaphragm properly. So when she gets excited and sounds like she is being throttled its nothing to worry about apparently. Please keep stuff crossed that she continues to do well as right now she rates as a "Snickers" on the craziness scale (only slightly). Lets try and keep it that way.


10th December 2011

Well we are in the new house, its chaos still but we are in. George has so far happily slept in his new room (that could all change by 2am though) and I know this may be a one off and just a fluke, but Alice only bloody rolled over!!!! Not life changing I know but this is a baby they told me would most likely never smile, hold her head up or even recognise her family and she has pretty much rolled over on time for a "normal" baby. Please let it be the first of many and it wasn't by accident. And before you ask no I didn't put her on a slope and give her a gentle nudge.


11th December 2011

PH Probe study for Alice today in preparation for her g tube surgery. So Alice now has two tubes up one nostril for the next 18 hours. As usual though so took it in remarkably good spirits. Mildly pissed off naturally but as always did me proud and put George to shame with her ability to get over it and move on. Love you sweet cheeks, hope we can get that tummy peg for you for Christmas xx


15th December 2011

For the first time since emigrating in July 2007 we have run out of proper English tea bags. Wonder if I qualify for a Red Cross food drop. I have happily converted to Vegamite, Watties Ketchup and even some very odd meat (allegedly) products that claim to be sausages but I'm afraid I can never turn my back on a PG Tips Triangle bag. Anyone travelling over this way all teabags are gratefully received. Oh I wonder if I call Children In Need and claim its for Alice if they'll help?


18th December 2011

Time for a non funny, sentimental and smug parent type status update. I love my daughter so much. Her smile makes my hearts melt, my eyes well up and the world a better place. I cannot believe the impact she has had on me already and I love her to the ends of the earth. George however had a "poo leak" in his pajamas this morning, was "naughty cornered" more times than I can remember and has been chasing me with a runny nose shouting "Bogeys". Oddly I rather like him too.


19th December 2011

Dropped George at day care, went shopping, drove home. Realised I no longer live in that house, turned around, drove to new house. Fuckwit.


20th December 2011

Rolling babies and nasal tubes do not mix. Alice has once again freed herself from her tube and left a very snotty trail across her playmat. Back in the car and off to the hospital. By the end of today that will be one emergency doctor visit and two hospital visits, surely a record?


21st December 2011

So it seems Santa will not be giving Alice a stomach peg for Christmas after all due to her nasty cough and further investigations being required for her outstanding ability to vomit to almost a professional standard. Just as well though as not sure George would have been too impressed with me being in hospital for the whole of Christmas with Alice. Fingers crossed for first week in Feb.


22nd December 2011

Alice had a new tube up her nose yesterday, 5 month jabs today and countless nasty medical interventions in the last few months. Within about 10 mins of virtually any of these she smiles, giggles and coos happily. George, who has no medical condition & requires no painful treatments has vomited out his nose at the hairdressers, soiled himself at the doctors, puked in his bed for 2 nights when I was away giving birth to Alice and almost hyperventilated on a number of occasions out of fear of anything from trying on new shoes, going through a tunnel or having to wear a sun hat. And they tell me Alice is "special needs".


23rd December 2011

It has to be said that two year olds are pretty weird. Today we have a new walk to add to Georges already extensive collection of funny walks, he has shouted nonsense all day at the top of his voice, drank extensive amounts of bath water, kissed the "oova" (hoover) goodnight and his unnatural interest in his "ubber guv" (rubber glove) continues to grow.

In other news,Alice had her weigh in today. Its a bit like reverse Biggest Looser where extra kgs win praise. She is officially one chunky lady and if her face gets any fatter she is going to start looking like a current bun. And there was me thinking "oh it doesn't matter if I have to lift her all her life, she'll be tiny like her mother". Industrial hoist anyone?


24th December 2011

There is only one thing worse than a 2.30am poo explosion in the early hours of Christmas Eve......no I take that back, there isn't.

11pm

Right off to bed. George all tucked up and for some reason under the impression Santa is going to come down the extractor fan above the oven. I don't have the heart to correct him. Can't wait till he opens his new rubber gloves.


25th December 2011

If anyone is expecting another domestic goddess type update explaining all the wonderful things I have cooked, am about to cook and I am planning to cook. Or about the mouth watering smells coming from my kitchen and the awesome table display I have created, then you are in for a very long wait. I have done fick all, the only smell in my house is poo, Greg will be barbecuing and I will be pissed before lunch. Because thats how we roll in this house.


25th December 2011

5pm in New Zealand, sun is shining and has been all day. I'm drinking beer and sunbathing in the garden, George is wearing his new rubber gloves and running around armed with a toy power drill. Alice is just grinning like she knows something we all don't and Greg is about to start up the barbie. What a great day and best of all both my kids are here to see it with us, something we thought might not happen. To everyone who kept up with our dramas recently and sent wishes, prayers and messages for us I hope you all have the best Christmas ever and that all your families stay healthy and happy xxxxx

28th December 2011

Been having a chat with Alice about any resolutions she has for the new year. She tells me she will endeavor to spontaneously develop the missing enzyme from her glycine cleavage system, thus allowing herself to effectively break down all amino acids and in turn not further damage her brain and body by poisoning herself with excess levels of glycine. I told her that would be very much appreciated.


31st December 2011

You would think with the year I have had that I'd be glad to see that back of it but its actually been a pretty awesome year. George has grown in to a fantastically weird toddler, we met the chubby wonder that is Alice, we realised just how unbelievably kind people can be and we got a BIG lesson in what really matters. 2011 was not a bad year at all. Happy New Year everyone and thanks again to all of you involved in the "shit storm" you know who you are xxxxxx



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