The second half of 2012 saw a massive down turn in Alices gastric health. After my early battles to convince medical professionals that Alice was ill in the first place, I now found myself fighting to get her treated. Suddenly they agreed she was ill but now she wasn't worth saving because she was considered terminal. It was at this stage we realised that we couldn't stay in New Zealand if we wanted Alice to live her best life or maybe even live at all. Not only was the cold, damp weather meaning constant illness and hospital admissions but with access to only one metabolic specilaist, who had written her off as beyond hope, we accepted we had to get to a bigger city and warmer weather. The plan to move to Perth in Western Australia began to take place.
Alices legs remained firmly in the air, she still never slept, George continued to pursue his rubber glove fetish and we marked the anniversary of her diagnosis with a massive fund raiser in a local park.
4th July 2012
What???? I have an incurable metabolic disorder??? Are you kidding me? Holy fuck!
5th July 2012
The difference between boys and girls:
My (nearly) 3 year old, non brain damaged, fully functioning and apparently healthy son still insists on being fed by me most of the time.
My 1 year old, physically and mentally disabled daughter with an incurable and essentially terminal metabolic disorder will only feed herself and throws a fit if I try to help.
Weaker sex? Hmmm I think not.
10th July 2012
Yep, still got her legs in the air.
11th July 2012
More differences between men and women.
Its Alices first birthday at the weekend and we are throwing a bit of a party as its something we never thought we'd see.
Me: "I'm a bit worried about Saturday. I hope I can enjoy myself and I don't get all teary and fall apart in front of people".
Greg: "Really? I was just wondering how drunk I could get at a 1st Birthday Party and get away with it".
12th July 2012
To everyone asking what to get Alice for her birthday, she would really love a synthetically engineered enzyme that will replicate the function of the deleted exons in her GDLC genetic code and enable her to effectively metabolise glycine. If anyone can source this you can have my house, my savings, my right arm, both cars and any bodily organs I can live without. In fact, fuck it, you can have all my organs and use the remainder for medical science.
15th July 2012
In 15 minutes time Alice will be one year old exactly. At 9.45am 15th July 2011 she opened her eyes, sneezed, peed on me and went back to sleep. The rest of the story we all know. Happy Birthday sweet girl, I'm so sorry I never shouted louder and got you treated sooner but it is what it is and one day I will let it go (well maybe I will). You are the most inspiring person I have ever met, you have changed my life forever and brought about so much good and love in so many people that if you are OK with your condition then I guess I have to be too. Stay crazy, stay happy, stay funny and if you don't mind please stay for as long as possible. Love your shattered and aged Mummy xxxxx
10.30pm
What a fantastic day. The house was bursting at the seams at one point, so many people popped in to wish Alice well. She has more gifts than we know what to do with and we have been left with a huge amount of food and alcohol to work through. I will try to thank you all individually soon but for now please accept a group thank you. Whether you turned up, sent a card, delivered a gift, left a message, e mailed, liked a comment etc etc its ALL appreciated more than words can say. Its just gone 10pm and Alice is having an attack of the crazies so she is rolling round the lounge squealing and laughing at things that don't exist, but hey she is having fun so who cares. Alice is doing what she does for all the NKH babies and kids who can't. We know we are blessed, we know we are lucky and we know we dodged a huge bullet, but we never ever forget those that didn't make it or have a much harder fight.
16th July 2012
"Would you tell me please, which way I ought to go from here"? said Alice
"That depends a great deal on where you want to go" said the Cheshire Cat.
I don't much care where" said Alice
"Then it doesn't matter which way you go" said the Cat.
".....so long as I get somewhere" Alice added.
16th July 2012
Emotional weekend out the way and Alice has an ear infection and a perforated ear drum. True to form minimal fuss was made and her insane grinning only lessened slightly. In fact George made more fuss when he bumped his knee on his train set, but then I expect no less.
17th July 2012
George can now strip completely naked, throw his nappy across the room, like a tiny male stripper and shout "Taaaa-daaaaa"! Beginning to think my kids need their own reality show.
18th July 2012
1am
Woken by George only inches from my face saying "Look Mummy, I have eye bogeys". After throwing him in the bed between me and Greg and getting back to sleep, Alice wakes at 4am for what she thinks will be playtime. Turned her fairy lights on and had to listen to her squeal at the ceiling for the next few hours. An hour after she passed out, George leaps on me shouting "Up Mummy, Toy Story". How the hell do people survive with 3 kids?
20th July 2012
I hate to write sad updates but the more people hear about NKH and the beautiful babies who suffer from it the more their lives become so much more than just that of sick children. A sweet sweet beautiful girl died last night. She was three years old. Her family are devastated but she is free and happy now and passed away peacefully in her mothers arms. Please all spare a thought as another family goes through the unimaginable. I know for one I am heartbroken.
21st July 2012
Ok so I know Alice has a huge amount of supporters and followers but lets see who is prepared to put their money where their mouth is. 19th October is the anniversary of D-Day (Diagnosis Day). We refuse to see it as a bad day and we have decided it will always mark new beginnings. After all it is the day Alice finally got treatment that brought her back from the brink and allowed her to be the crazy little lady she is today. So if I was to shave my head for charity on that day who would pay up? It may or not be an NKH charity, it might be for the local Childrens Ward at Wellington General or something for the Make a Wish Foundation etc, but it will be a good cause and it will be done in Alices name. If enough of you convince me you'll hold up your end of the bargain, I'll keep mine. Go on post your support I dare you.
22nd July 2012
HUGE developments this week (well in Alices world anyway). Firstly she can now wave. Admittedly its more like a Nazi Salute with a hip thrust but she does it when you wave at her and its now happened so many times I know its not random. And secondly today she has learnt to push a ball through a hole, watch it come out the other side, pick it up and put it back at the top again. Again this is very cackhanded and only happens after many many tries, but she has done it 5 times. I know this is nothing for your average 1 year old but Alice is far from the average 1 year old and in her world this is so huge I can't tell you. Yet again I feel like crying. My little lady is just awesome.
23rd July 2012
Current situation with the proposed head shave is this: Evening of 19th October (NZ time) we will throw a bit of a party at our house. Me and Greg will both get our heads shaved and Greg will get his chest and legs waxed (he is VERY well carpeted). We will set up some sort of PayPal account so everyone can donate and we will film it and take pics. Put it in your diary and further info will follow in regards to charities etc.
25th July 2012
If only she was blessed with as many enzymes as she was ounces of cuteness.
26th July 2012
Quick as a flash it turns to shit. Alice is going floppy and fainting after her feeds. Now in hospital with Alice as blood sugar levels are dangerously high one min & too low the next. Hope its not diabetes. How many metabolic disorders can one kid have ?
26th July 2012 3.30am
Whose ill? Me? Are you sure? Dammit I hate being ill. What time is it? 3.30am you say? We'll strike me down with a feeding tube, its Party O'clock!
27th July 2012
We are going home. Results wont be back till tomorrow but nothing they can do here that I cant do at home as no longer needs IV. Now looking like roto or noro virus. At least this way Alice gets to cover herself in poo in the comfort of her own home.
28th July 2012
Bollocks, all tests are negative so they think its just something viral or a non specific gastro bug. Lets just hope whatever it can be shat out of her!
29th July 2012
Alice is still not right but Ive gone back over my notes and this all started after MMR and Flu Jab on the same day. All other jabs she has been fine with but MMR and Flu are live vaccines. Could this have triggered something? God its so bloody confusing with NKH.
30th July 2012
Not much for your average one year old but huge for a child with NKH. Alice is now starting to follow basic instructions and play games. Today she even put her own pacifier in twice. In a strange way its such a privilege to see all the small things that you never even notice in a healthy childs development.
31st July 2012
Alice is still not herself. Maybe I am not kissing her enough? Yeah I reckon thats the problem. Kissing and blowing raspberries on her 95% of her awake time is clearly insufficient. I shall endeavour to do more. And while I'm at it I might increase the sniffing too, I'm obviously not doing that enough either. Its such hard work being a Mum. All this kissing, sniffing and raspberry blowing doesn't do itself you know.
2nd August 2012
So the unexplained floppyness, gagging and exploding nappies just gets worse. Community nurse on her way and we are waiting for a barium swallow study and some scans to try to find out what the hell is going on. Two weeks of this is way too long.
I am feeding her just 50ml hourly via tube and as soon as it hits her stomach she goes weak, floppy and her head falls forward like a bird with a broken neck. Then she retches gags screams and falls asleep. No temp, nothing found in bloods or poo. Mickey button all ok so barium study is next. Running out of ideas.
3rd August 2012
OK so I am off to Wellington Hospital to shoot Alices specialist in the face. The person who has not even laid eyes on her in two months has declined any investigations into her illness as it is apparently just a sign that NKH is taking hold and she is deteriorating. Hes bloody cancelled the swallow study and bowel x rays! It seems he thinks I'm in denial and I need to accept the fact that shes terminal and stop requesting investigations, so basically not fucking bother treating her. How fucking dare he? Watch this space as I may well make the evening news for assaulting certain medical staff.
What makes me really mad is if people had listened to me for the first 8 weeks of her life she wouldn't have lived with this untreated for almost 3 months and she wouldn't be nearly as ill in the first bloody place. When will they stop writing her off as a vegetable that is waiting to die and see her as a child that needs the same care as any other? God I am pissed.
4th August 2012
Greg called the specialist last night as I was in danger of calling him a f*ckwit and challenging him to a fight (for anyone who has met me I am 5ft nothing and could fight my way out a wet paper bag but thats not the point).
Anyway he says the Korean doctor who passed on his message probably didn't translate it as well as she should. He claims what he ment was that as she has NKH it will take her longer to kick things and he still maintains its a gastro problem and it will pass. Personally I don't think thats what it is but due to Alice perking up and grinning like a looney between every episode I am finding it impossible for people to take me seriously. De ja vu much??? Will be taking deep breaths and hatching Plan B.
Im fast learning that because all NKH kids are expected to either die at birth or soon after (and sadly many do), those that do anything else are a bit of an enigma. Its also dawning on me that New Zealand is so small. There are only two metabolic specilaists in the entire country and the one we have to see is clearly a dick.
5th August 2012
1am in New Zealand. George is fast asleep in our bed and Alice has boarded the Crazy Train, armed with a bottle of Tequila and some of her "special" smokes. As usual I get to go along for the ride and will be waiting for her to party herself out around 4am.
6th August 2012
NKH sucks sh*t on all levels, fatal, severe, moderate or mild its a sh*t and I hate it. I hate what it does to the kids, their families, the bereaved parents, siblings, I hate how we have to fight for EVERYTHING, how no one bloody listens and how Mums are leaving hospitals without babies and are never the same again. I tell you if I could get in the same room with NKH I'd tear it a new arsehole right now. Rant over and yes I am fine but I think I speak for many and feel better for saying it.
I think I am becoming unhinged lately I am trying to pick fights with genetic defects.
7th August 2012
OK enough is enough. Off to Wellington General to get some answers and I am not leaving till I have them. Why a year old child that can't tolerate 50ml formula hourly is being left to ride this out is beyond me. I assume a "normal' healthy child would be left in pain, floppy, weak and vomiting multiple times daily for 3 weeks??? Hmmmmmm.....thought not!
She has all the signs of gastric dumping syndrome right down to the low blood sugars and no fucker will take me seriously. We have been admitted now though and I am not going home until they have done EVERYTHING I want. They even said today "well glycine is toxic so it will eventually effect all parts of her body". Which is once again code for "Shes terminal, you are in denial, so we really don't see the point in looking into this any further".
8th August 2012
So we went home "on leave" last night and drove back in this morning. Alices primary doctor wasn't there (luckily) so we saw another pediatrician. A junior doctor told him the history, he puts his hands up and says "Whoa!!!, have we checked her plumbing"? Everyone shakes their head and he says "Why are we even having this conversation, get her plumbing checked then we'll talk again". I think I love this man. Finally the tests I asked for almost a month ago are being run.
9th August 2012
Doctors have found a kink in Alices bowel and her entire system if bursting with air (I know that has so many funny comments just waiting to be made, but think of the pain!). So fecking much for it being glycine damage or a deterioration of her condition. Taking deep breaths and trying to be happy we are getting somewhere and not pissed that we had to go through all this.
Hate to be proved right but yet again but can I ask "why the feck can't physicians listen to the mothers"?????
3.34am and she has FINALLY dosed off. I can get a few hours before the ward wakes up at 6am and the kids start screaming and the nurses do their rounds. Happy days. Alice is fine, she just wants to play all bloody night. No sign of this trapped air yet though. Perhaps she will be on the ceiling like a helium balloon when I wake.
10th August 2012
Latest is that there is no improvement in Alice, if anything she is getting worse. Unless of course I don't feed her then she is perfectly happy. Recent concerns about toxic levels of acid in her blood have not shown up in tests, so might be able to rule that out. Barium Study booked at 8.30am tomorrow (finally). Discussed the situation with a different specialist today and she seemed to think the problem is not the air or kink in the bowel. She thinks whatever the actual problem is, it is in turn causing the air to get trapped which is then causing so much pressure it has caused the kink in her bowel. So the kink is the symptom not the cause. Upshot is it may need a camera down her throat and after that who knows what we'll do as she can't keep this up much longer.
11th August 2012
We are home for the weekend and finally getting somewhere. All tests (barium, blood gas, urine, ultra sounds etc) are so far negative and kink in bowel def seems like a symptom of the vomiting, trapped air etc rather than cause. Current thinking is split between Early Gastric Dumping (which Ive been saying for weeks) or a "vasovagal response" to feeding which is basically fainting and puking after food. Google both if you want to know more but treatment is much the same. So she is off all solids for a couple of weeks and we are pump feeding slowly. Hopefully after weeks of this crap things will return to normal. Today is our first clear day without a vomit or collapse whoo hooo!
12th August 2012
One feed down and one vomiting session and a passed out Alice. Is it unacceptable to open a bottle of wine at 8.30am?
So in desperation I just tried a feed with no formula (water and pureed veg only) and no reaction! Might just be a one off as it happens about 1 in 2 feeds but will try same for rest of the day and see what happens.
Second feed with no milk. No reaction, God pleeeeease let this be the answer!
Three feeds, no formula, no vomit. I see a pattern emerging....
13th August 2012
So have taken it upon myself to completely ignore stupid doctors advice as we are getting nowhere and sort it out myself. The last 7 feeds have had no formula in them, only water and pureed food and whatdoya know? No vomits, no faints, no floppyness and no passing out. Three more feeds like this and I will be presenting my findings to Alices "Specialist". Think I might present them on the tip of my shoe to the cheek of his butt though.
14th August 2012
Me: Can I get you a drink George?
George: Cold hot chocolate please.
Me: So you want a chocolate milk?
George: No. Cold hot chocolate.
Me: So you want chocolate milk?
George: No. Cold hot chocolate.
At this point I accept defeat.
15th August 2012
Little lady is slowly coming back to us.
3am I could not make this shit up if I tried. Back in hospital. Alice has temp of over 40 degrees & febrile convulsions. This is shaping up to be a very shitty month.
16th August 2012
Alice got to sleep at 5.30am this morning when we got home from hospital and so did I. She is one very unhappy lady. She definitely has tonsillitis and conjunctivitis and we are awaiting swab results on flu (unlikely as she has had her jabs) and RSV (we do not want that one again!). Possibly caught from George or from last weeks ,totally unnecessary, hospital admission. On the up side I have told her "Specialist" to take a fast walk off a short plank and have been referred to another doctor. He is not an expert in metabolism but nor am I so I am sure between the pair of us we can start treating Alice like a child and not some second class citizen who will who drop dead at any day. Under the circumstances she is doing OK but it was a rather scary ambulance ride for us both and she managed to give two paramedics a bit of a fright too.
17th August 2012
Since Alices diagnosis, I have always had a hospital bag packed and ready for Alice and me. Two months ago I stuck my fingers up to NKH and unpacked it. Its apparent I must accept that NKH has responded by flipping me the bird, dropping its undies and farting in my general direction.
20th August 2012
So results back from hospital, Alice has Influenza A. Flu jab was worth it clearly. Just gotta wait for it to pass and keep her hydrated. No wonder she's so miserable.
21st August 2012
OK so I am just feeling sorry for myself lately. I have flu, Alice has too, just finished 4 weeks of dealing with a vomiting, floppy Alice and endless arguments with useless doctors, unnecessary hospital stays just to get heard etc but surely this must get easier? All my spare energy is being wasted in fights with the establishment when it should be being used for my kids. I often wonder how much of this is simply having two kids under 3 years old and has nothing to do with NKH at all. All verbal kicks up the arse are appreciated.
22nd August 2012
Still unwell. Still got our legs in the air.
23rd August 2012
Is feeling slightly lifted among the shite knowing that this D-Day Fundraiser thing is looking to be pretty huge. If we can get half the turn out of those who say they will come we are gonna have an awesome day. Half funds go to NKH Charities and half to Brianna's Page. Please check it out so you can find out about Brianna. She is in George class at day care and fighting kidney cancer.
24th August 2012
And so the great bird of fate has once again circled our house and shat on us from an enormous height. Alices Flu has now progressed to a chest/lung infection. Whoever it was I pissed off so badly I in a past life, you have made your point. Hospital bag by the front door for the next few days it seems.
Alice has had enough and I don’t blame her.
26th August 2012
Would like to congratulate Gregory Underwood on drinking so much last night that he cannot physically stand up today and has spent the last hour unable to move from the bathroom. I was twiddling my thumbs only a few hours ago wondering what the feck I was going to do with all this spare time I have on my hands and thinking just how much I'd love to have someone else to care for to keep my mind off my own flu and deteriorating health. Gregory you are a keeper and I am truly a very lucky woman.
30th August 2012
Wow an amazing amount of donations already. Thank you, thank you, thank you. If this is just the tip of the iceberg, plus all the money we hope to raise on 20th October at the D Day Head Shave Fundraiser we will really make a difference.
31st August 2012
10 minutes before I have about 5 kids and their Mums due to turn up for a playdate George say "Me want to be nudey" and promptly strips. He is now circling the house roaring loudly and shouting "Here I come Mummy,Im a nudey dragon".
1st September 2012
$1,000.00 NZD raised already and not a cake has been sold, I have a full head of hair, Gregs chest is still fully carpeted, no fundraiser has taken place and no raffle tickets sold. Imagine what we can do by the time we get to D-Day in October?
2nd September 2012
Got to share a soppy family moment because I'm in that type of mood. Tonight we had a fish and chips picnic on the floor with George, complete with ginger beer. Alice was lying on the floor next to me getting quite upset so I sat her on my lap as I ate. She starts bouncing and trying to grab at the chips so I gave her one and stopped crying. She held it in her hands and put it in her mouth. She quite clearly was upset at being left out. No she didn't eat it, she just chewed it to mush and licked her fingers but the fact is that its the first experience we have had of anything like a family meal. Its another first and something we never dreamed we would see. Anything that even resembles a normal family moment starts me off with the tears. I think we can do this.
6th September 2012
Wonders when the Nurse to Mum ratio will swing in the favour of being a Mum. Yep you guessed it, shes sick again!
11th September 2012
So pant wettingly exciting news is confirmed. I am pregnant!!!!
No not really but I couldn't resist. The real news is that my Mum is flying half way across the world to come and be with us for the D Day Fundraiser. She was flew out within 24 hours for the awful awful news last year so it seems fitting she is here to celebrate how far we have come and help us put the year behind us. And here's the best bit....she is also shaving her head on the day!!!!
No, not really but couldn't resist that either.
17th September 2012
Can anyone tell me why a normal healthy child can pick at food, not eat much one week and eat loads the next, have weeks where they only eat yoghurt or cheese and grown up just fine, and yet when you have a tube fed child you are constantly told exactly how much of everything you MUST get into your poor baby so they get all the vitamins, essential minerals and "micro nutrients"??? Getting a bit sick of being told Alice is underweight and not getting what she needs, the poor child is stuffed to bursting point every few hours and I would never do that to George so why must she endure it?
19th September 2012
Had a shower with George this morning and afterwards the conversation went like this:
Me: Time to get you dressed
George : NO! Be noodee
Me : Nope we have to go to daycare
George: Noodeee and run?
Me : No time to be nudey and run we have to get ready.
George: Noodee digger games?
Me: Nope.
George: Noodee helicopter games?
Me: NO
George: Noodee and roar? Raaaaaaaaaaar!
Me: F*ck it, I give up.
20th September 2012
I cannot tell you how huge this is. Alice has not fed from bottle since 3 months old. Since then she does not know how to suck and she cannot co- ordinate swallowing, as such fluid either falls out her mouth or it she mistakenly inhales it. She has from time to time taken sips from a cup and can swallow about 1 in every 5 gulps, the rest are a disaster as she forgets what she did the first time. Today Alice drank 30ml of juice from a sippy cup with a no spill teat. Admittedly it took a long time but with each go she got better and better and by the end of it each attempt was a success. This is HUGE for Alice and any NKH child, not only does it mean one day if she can hold a cup she can give herself drinks but it means the skill has not been lost and she is learning (another thing we were told she could not do). 30ml of fluid!!!!!!
21st September 2012
Three year old Georges hilarity for the day:
Me : Phew George you smell. Have you pooed?
George: Yes Mummy.........and I think I'm gonna need a shower.
This is a child who barely spoke a word until 2 months ago.
24th September 2012
At 14 months old, Alice head control is good enough that we can turn her car seat to facing forward and almost upright. This has clearly been a move Alice has been anticipating and wanting for some time. While we strapped her in she squealed with excitement relentlessly, as we reversed out the drive she tried to bounce in her chair and giggled. As we drove out our street the thrill was written all over her face. However as we hit the open road the the fear crept in. For the next 20 minutes she held the side of her seat firmly with her hands and looked completely stunned, with her mouth hanging open and her eyes like satellite dishes.
26th September 2012
OK so D Day Fundraiser is getting nearer and we need to start pinning you down to what you can definitely contribute. So for anyone who said "I'll bake something" its time to put your spatula where your mouth is.
27th September 2012
Alices walking frame on wheels should be here in two weeks. I am so bloody excited about getting disability equipment delivered, I must need a hobby.
28th September 2012
I was fairly confident Georges rubber glove fetish had passed, until tonight. Fresh out the bath and wrapped in a towel, the following was discussed:
George: Me want Mummycuddle.
Me: Of course you can have a Mummycuddle (arms outstretched)
George: NO! (recoils away from me). Put your gloves on.
Me: What? Are you serious?
George: Ubber gloves. Red. Red ubber gloves.
Me: I thought we'd moved passed this. I'm not cuddling you with rubber gloves on anymore.
George: We wear one each?
Me: Eeeerm....OK then.
5 minutes later he is cuddled on my lap as we hold our rubber gloved hands and he looks happy and content and Im mouthing "Oh my f*cking god" to the ceiling.
29th September 2012
Today the world is just peachy.
Alice not only drank loads of water from her cup but she even tried to do it herself (badly, but who cares). She ate a good few teaspoons on puree (that hasnt happened in about 3 months) and even swallowed some and then she sat with us all at the table and self fed herself some cheesy puffs. Oh and she is even prettier than she was yesterday. George continues to be delightfully odd. He now lies over the arm of the sofa and says "smack my bottom Mummy". No doubt it will all turn to tits at any second, but right now we are on Planet Peachy.
30th September 2012
Good morning fellow Nutters. Look what I found in the corner of the cot.
2nd October 2012
My status update from this exact date last year was apparently me saying I was coming off Facebook for the forseable. I remember exactly why I wrote it. I was so devastated that Alice was clearly "different" and not developing and yet no one was giving me answers. I had stopped going out in public and cancelled on all my friends rather than face people. I hid Alice away because she was behaving so strange and I couldn't bare the looks from strangers. Then I kept seeing so many new births on FB of healthy babies and it was just getting too much. Kinda wish I could go back in time and give myself a hug.
3rd October 2012
Over $2,000K raised in donations already and thats not including anything from raffle tickets and all the auctions, bake sale, bouncy castle, head shave, competitions and all the other things going on on the day. Remember all of you how you promised to donate if I shaved my head? Well get ready to donate because its only 3 weeks and I can post photographic evidence.
6th October 2012
Can my kids get any weirder? Last night George woke up in his wardrobe at 2am screaming.
9th October 2012
So the excellent run of good health lasted all of about 3 weeks. Alice is once again bedridden with a cold and either constantly asleep or awake and crying. Doing feeds and meds in her sleep. Just as she was really picking up on her drinking and eating orally we are once again back where we started. She had just sat up on her own again after the flu and that too has now gone again for the forseable. This is getting stupid now. I know I have a 3 year old who goes to daycare so brings in all sorts of bugs but time to sort out Alices immunity. Cant accept this is the way its always gonna be so will be visiting the health food shop and throwing everything at it that we can.
17th October 2012
Bloods taken today for my DNA testing. Gregs will be done on Friday. Now we just have to wait and see who has the "Utter Bastard" gene and who has the "Not so bad but still a bit of a shit" gene.
19th October 2012
This time last year was my last few hours of my life as the old me. I was living at the hospital with Alice and they were pretty sure it was NKH by this point. The drugs were on standby but they wouldn't administer them until the results of her spinal tap were back the following day. My baby girl was now seizing non stop and her only states were either convulsing or pretty much unconscious and even that was drug induced to give her a break from the seizures. It was the first day I had realised she probably wasn't going to make it and I had even got up the courage to ask outright if she was going to die.
I hadn't eaten a thing in 3 days and I wasn't remotely hungry. I had never felt so alone and yet I now know I wasn't alone at all. I had a whole new family waiting to meet and everyone of them had been there already. To all the Mums and Dads who went through a day like that, I am sorry it had to happen but so glad we are there for each other now.
20th October 2012
Just to confirm about tomorrows fundraiser, come rain or shine its still on. We have use of the hall at the end of the domain near the train station and playground. So we can get most of it inside if we have to (including the bouncy castle). That said can everyone pray for sun, wish for sun, shout at the sun, do a sun dance, post me some sun, email me sun, txt "SUN", loan me some sun, in fact anything you can think of but we need bloody sun.
21st October 2012
So Alice has decided to prepare for the big day by pulling an all nighter. Nope not a big sleep, but staying awake ALL damn night!! She woke at 10pm and went off again at just before 6am so needless to say we are all knackered. No idea what was going on but a major attack of The Crazies so fingers crossed we are not in for some trouble. On the up side there is not a cloud as far as the eye can see. Maybe Alice was up summoning the good weather.
9pm
So I am bald, Gregs nipple is bleeding, George has heat stroke, Alice is loopy, the weather was just amazing and we raised a bloody heap of cash and its still flooding in. .
For those asking how George coped with me having my head shaved. I had many chats before hand about Mummy looking like the Fat Controller so he thought it was cool. What surprised me was he came to sit next to me and hasn't stopped rubbing my head since, he thinks its great!
So I'm off to bed now after an amazing day. I broke down on a number of occasions purely because of the efforts of so many people to make the day a success. despite the forecast being rain and gale force winds, the sun shone like it was the height of summer and the wind held off until we had all packed up and headed home. How did we manage that? It was just the most fantastic day, thank you everyone who supported us. Thank you thank you thank you. We did Alice and Brianna proud.
22st October 2012
Thank you George for throwing up on me in bed last night. Seems you did have too much sun yesterday after all.
24th October 2012
Think the full impact of the last year has descended on me. I have a raging case of tonsillitis and waiting for results to come back to see if I have Strep B. Nothing like looking and feeling like crap with a bald head to finish off the look. Can't complain though I have my wonderful Mum out still so have been able to sleep until 3pm for two days running. Admittedly I have had to get up every few hours to administer drugs or tube feeds but I think I have had more sleep than I have had in months.
25th October 2012
Good news is I don't have Strep B, bad news is I have Strep A. I can only assume Strep A is a better class of infection than B but perhaps not as good as Strep A+. Must try harder next time.
31st October 2012
4 teeth in a week and what looks like an infection in Alices G-tube.Fucking marvelous. Lets just see if she gets the tonsillitis that has struck the rest of the house.
2nd November 2012
Not sure if I am more excited or exhausted. We seem to be going back to our old "Nightime Crazies" phase which basically means Alice is awake barking at the moon from 2am till 6am each night. Tonight is my third night of this and its 4.30am. I have done all the usual things , drink of water, nappy change, cuddle, temp check, firm talking to, tell her she's beautiful and I love her, but explaining I will sell her to gypsies if this continues etc etc. Anyway I just poked my head in to make sure she is OK and shes only bloody clapping! . Again this is one of these HUGE moments for an NKH Mum that just passed me by as nothing amazing with George but its pretty big in our world now. Well must go, gypsies to meet, small suitcases to pack etc.
3rd November 2012
Just realised that despite a number of different posts relating to amounts raised on my page and the pages of friends who helped out. I have not actually posted how well we did. We still have some money coming in and a few last items to sell off, plus some people can't do pay pal so we are trying to find another way to accept cash but we have cleared $22,000 NZ (approx 11,000 GBP).
Half will go NKH charities and the other half the money has bought Briannas family 6 months of time when the don't have to worry about paying their mortgage. Briannas Mum can now stay home and concentrate on getting her well, which is all any Mum in that situation should have to worry about.
5th November 2012
For Sale:
Blonde haired brown eyed 3 year old. Comes free with shitty attitude, bad manners, delusions of grandeur and has a broken volume switch. High possibility he is possessed by some sort of evil spirit but nothing a good few days hard labour won't sort out.
No returns or refunds.
6th November 2012
Talking to George this morning who was dressed in nothing but a t-shirt, and explaining why we needed to get him dressed and stop mucking about or we will be late for day care blah blah blah. George pulls all the appropriate listening faces and then says:
"Yes Mummy, but look, my winkle's out TAAAAA DAAAAAA".
7th November 2012
Right its nearly 4am in NZ and I have been up since 2am trying to convince Alice to go back to sleep. Time to cry this one down Alice. Sorry honey but simply being a bit mad and very cute will only work for so long, I am going to bed and you are on your own Cupcake. Incidentally when I say "bed" I mean Georges racing car bed as he has left it empty and is sleeping star shaped in my bed. I seem to move further and further down the pecking order in this house.
12th November 2012
Teaching Alice to use a variety of locks. Should she ever need to bust out of an asylum.
So 4.30am, we meet again, my old friend. Shall I pop the kettle on and we wait for 5am to join us? Yes, you say? Excellent plan, in fact f*ck it, lets just go right through till lunchtime and dine with midday and have an early afternoon breakdown.
14th November 2012
Off to the hospital for Alice to be prodded, poked, weighed and measured. No doubt she will be too thin and I will get told to load her up with crap to fatten her up. Think I may just nod say "uh-huh" then go home and ignore all the advice.
15th November 2011
Alice has her shopping legs out. Say no more.
17th November 2012
Progress report:
So at 17 months old and 13 months since diagnosis this is where we are at. Alice still can't seem to crack this eating and drinking lark. She can take sips of water but thats it. She no longer self feeds as she prefers to throw food and whilst she will now let me place food on her lips and she licks it off, when she tries to swallow it she chokes. We know she can swallow because she doesn't drool at all (apparently thats how you tell). Any hope of her speaking is still a long way off as she has yet to form anything that sounds like a Daa or Maa or Paa etc. That said she can squeal like a piglet for hours. As such I have been loosing a bit of faith in ever cracking eating or verbal communication. On the flip side Alice is doing amazingly well mentally and is making me increasingly question just how badly brain damaged she actually is. She can now clap her hands together, bang toys together in front of her, raise her hands to be lifted up, lip smacks for kisses, bangs her foot when we ask where her toes are, give "high fives", waves, and follow a few basic instructions for example she will hit the bath water when I say "Splash". She definitely understands some basic sign language. I am confident I had my first "sign" back from her yesterday. She can sit but sadly her crazy movements still mean she can fly backwards very very hard so I cant move away from her yet. She skoots around (backwards) in her disability walker and is up on straight arms when on her front. I am sure that if she didnt have the G Tube in her tummy she would be commando crawling but for now she gets around by rolling. That may all sound great and trust me it is but its still very very hard for her to do and it can take many many tries. My Mum hit the nail on the head the other week when she said watching her try and seeing the awkward way she does things, its like seeing a stroke victim learn all over again and find new brain pathways to get the messages through. Seeing my tiny determined cherub try and try and try until she gets things and never give up completely humbles me and it is one of the many gifts Alice has given me. So there you have it thats where we are at. Oh and best of all, apart from a minor cold which she fought of incredibly well, we have had 4 weeks of good health. Whoo hoooo.
17th November 2012
OK so clearly I have not thought everything through when I shaved my head. Next week we receive our official NZ Citizenship and then a week after that we need to apply for our NZ passports. Dodgy passport photo that will last into my 50's. Great.
19th November 2012
My daughter is a fecking genius its official. We have our first two words of sign language, "more" and "Mama". If you count arms in the air to be lifted then we have three. Before we know it she'll be giving me the bird and sign swearing. Love her.
21st November 2012
This morning I went to get Alice out of her cot, she saw me and signed "Mummy". I cant tell you how happy that makes me. George however informs me he is a Brussel Sprout after watching Mr Potatoes Vegetable Parade on Peppa Pig. All is good on Planet Weird.
22nd November 2012
Alice continues to frantically rub the back of her head on any surface that she is lying on and her matted mullet now means she looks a bit like a maltreated rescue dog. Some days I look at her and think "Hmmmm maybe I am just going to have to shave you and start again".
24th November 2012
Would like to apologise to my Mother for the 3 year old penis that was thrust inches from the camera on Skype this morning accompanied with the words "Look Gan'ma, I have my winkle out". I can't offer any explanation and I was as horrified as you. I wasn't in the slightest bit surprised, but I was horrified.
28th November 2012
So Alices new trick is to grab the front of her nappy and squeal and thrust. Living with a child with special needs I can handle. Living with a Michael Jackson impersonator ......not so much.
30th November 2012
American X Factor tonight, bottom two were Diamond White and Vino. No this isn't a joke. All we need is a boy band called Rum and Coke and a heavy metal artist called Snake Bite and we have a full house.
2nd December 2012
Today George discovered that Mummy's magnifying make up mirror makes things look bigger. As usual he was naked at the time and I don't think I even need to explain any more
5th December 2012
Well we have gone several weeks without any illness of any sort. This is HUGE in our world and unheard of in her life so far. Since diagnosis we have never gone more than 2 weeks without her being quite seriously ill or having been hospitalised. At the exact time she turned a corner I introduced liquid Grape Seed Extract to her regime and I personally think that is the reason for her good health. In addition to this, just over 3 weeks ago I introduced a magnesium supplement to help her muscle spasms, wriggling fits and night time crazies. Well we have seen no change in her movements but oddly she has slept 12 hours a night since we made this change. Again this is unheard of. She used to be awake from 2am to 6am every night with restless leg, back arching and giggling fits, recently we got that down to about once or twice a week but she has NEVER slept like she is now. In addition to that she can now go forwards in her walker and take a few proper steps at a time. I'd love to say she is close to crawling but I have wanted to say that for months. What I am learning is that whilst a normal child might take 5 stages to crawl (ie moving arms and legs but going nowhere, up on straight arms, up on all fours, rocking, crawling), kids like Alice have about 1000 stages. There are 100's of mini moves in between, that take Alice weeks to master and exhaust her. So she is probably not near crawling but she is always up on straight arms now, has been up on all fours a few times and has pushed herself backwards in a commando position. Its very very promising and utterly humbling to watch. We now have four signs, "more", "Mummy", "finished" and I'm sure she did the one for her dummy/pacifier the other day. There are many many other things that are too small to mention but huge to me and Greg but as always she continues to amaze and inspire us. Eating still isnt happening and if anything we seem to be going backwards but right now I feel if tube feeding is her biggest concern then we really arn't in the shit storm we were told we would be. Oh and she is quite clearly mad as hatter and still as wriggly as a live squid in a bin bag, but we love her for her oddness
.
7th December 2012
Both George and Alice have enormous Christmas Advent calendars.. Each day has a pocket and every night we put a small treat in the pocket for each child from "Santas Elves". Last night we put a chocolate teddy in Alices and a toy car in Georges. At 5.30am George gets up to check the elves have been then he plays in his room till we get up at 6am. I said to George this morning "Did the elves come last night? What did you get"?. George looks at me with chocolate round his mouth and says "I got a chocolate teddy and a car, Alice didn't get anything".
8th December 2012
George: Boobies.
Me: Whose boobies?
George: Mummy has boobies.
Me : Do you have boobies.
George: No, I just have nibbles.
10th December 2012
Has come to the conclusion that Alice is much like a badly operated Thunderbird puppet.
12th December 2012
Isnt the world supposed to end soon? And if so will it end here in New Zealand 12 hours before it ends in the UK?
14th December 2012
House sale....done. Australia here we come.
19 Dec 2012
Another day, another NKH family is devastated. I am becoming increasingly aware that we are all just sat in a waiting room hoping our names dont get called next. Today there is no place for denial about the severity of this condition.
21st December 2012
House sale gone through, shipping agents booked, flights to Australia paid for. Holy Moly this really is happening.
Oh and I just realised today is the end of the world. Off to buy vodka and drink it quick!
22nd December 2012
So its the 22nd December and we are not dead. What are we supposed to do now? I didn't plan anything for today.
24th December 2012
Pretty much got everything sorted for tomorrow. The only thing I havent been able to lay my hands on is synthetically viable enzyme for the safe and effective metabolism of glycine. If anyone can source such a thing please let me know. Night night and Happy Christmas from Team Underwood.
25th December 2012
Best Christmas quote EVER from George who is naked except for a hat and sun block:
George: "Mummy I just pooed on the grass, come and look at my poo"!!!
Me: "Where George, there is no poo"?
George: "I did. I did poo......it was here.......Oh I found it Mummy, look its stuck to my foot".
28th December 2012
This New Year will be the first one I have felt like celebrating in a while. The last 4 I have either been in hospital with suspected appendicitis , exhausted with a three month old son, throwing up from morning sickness with Alice or frankly too deep into an NHK shit storm to really care. This year we have 12 adults and 8 kids coming over, the vast majority will be staying the night. It will either be one of the most fun evenings I have had in recent memory or I will be helping myself to Alice drugs stash and wondering what the bloody hell I was thinking. Dextromethorpan and coke anyone?
31st December 2012
Time for the sad sentimental New Years stuff. Its already gone midday here in NZ so 2013 is not far off. Last year was bloody tough and I certainly had points where I thought either I couldnt do it or I was about to murder medical specialists who insist on writing Alice off. Thankfully I did do it and no one got killed.
We have made huge progress this year in both knowledge of Alices condition, how she works and reacts to things, non drug related therapies and amazing developmental and physical growth. Not much for a normal 18 month old, in fact pretty shoddy for a normal 18 month old. But "normal" is something Alice is not and never will be.
The NKH Family has continued to turn. We have had new members which is always a double edged sword for all concerned. We have lost newborns, babies, toddlers and of course the devastating news just a few days before Christmas. NKH takes no prisoners and has 100% kill rate. All these kids and their parents live with the inevitability that our number could be called at any day and that in itself takes a MASSIVE toll on us and our sanity. One day we all face what several families faced this year, no ifs, no buts. It will happen.
But for all of that NKH has brought me in touch with the most precious and wonderful people I could hope to have for guidance, advise and really to just listen to me moan. Alice continues to teach me far more than I could ever teach her and I truly truly from the bottom of my heart cannot believe how lucky we were to get her. She is as mad as a banana, cute a button, floppy as wet pasta, bendy as rubber and as beautiful as anything I have ever seen in my life.
So to all my NKH Family and everyone else who has helped in the last year, without judging or making assumptions on what we go through, thank you, thank you, thank you. Have a great 2013.
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