2012 was a weird year in so a many ways. We began to realise that Alice was perhaps going to be less affected than most cases of NKH and we saw gains and development that both ourselves and her medical team, never thought possible. However on the flip side of that we were not prepared for how medically fragile she would be in terms of getting ill, how her condition was far from stable, how she'd never sleep (yes the irony of her first few months just sleeping is not lost on me) and how she'd, if I'm brutally honest, be as mad as a fruit bat. It became clear that NKH was more like trying to solve an ever changing puzzle than a simple, stationary condition with one set of problems and another fixed set of answers. It was a time of surgery’s, g tubes, multiple procedures, medication adjustments, legs that seemed to always be by her ears and the slow realisation that her peers were fast over taking her. I should also add that these post are not exhaustive of the entire year and everything I posted. So whilst I am aware it looks like I have forgotten my son and only posted about my daughter, this was not in fact the case.
1/1/12
Just chillin' in front of the TV. Not sure whats with the legs.
2/1/12
Alice is coming on in leaps and bounds. Today she even brought her knees up under herself as if to crawl and lunged forwards, then she ate her first solids of banana and milk by mouth. George ,the apparently normal one of the two, has decided that at 2 and half years old he wants to play in a baby excersaucer, use Alices pink pacifiers and run round in his nappy blowing raspberries and shouting random words that make no sense whatsoever.
5/1/12
I have found another New Zealand mother who lost her boy very early on to NKH but at this time we are still the only surviving case in the country and single handedly flying the NZ-NKH flag. If there is anyone else out there Id love to find them because this years NKH Christmas Party had a really poor turnout.
6/1/12
2.30pm and the lady arrives to measure up for our curtains. 2.35pm Alice pulls her nasal tube out and promptly fills her nappy with runny shite and laughs. Amid the stench from Alices undies and the snot and stomach goo now on her baby grow, I frantically apologise and ask the woman to measure up while I get hold of a community nurse. 10 mins later me and a nurse are pinning Alice to the floor while she screams and has a new tube fitted. The curtain lady is clearly wondering what is going on at which point Alice throws up her feed and meds all over the floor. How did I get here?
7/1/12
If swearing offends I suggest you look away now.
To all the fucking stupid idiot parents who actively choose not to immunise your children I would like to say this. You might be selfish and dumb enough to take risks with your own childrens life but think about all the hundreds of other babies lives you threaten by being so short sighted. In the last two weeks we have been informed that Alice has been in contact with the whooping cough virus and the measels virus the last two times we have been to the doctors. She is too young to be fully immunised against either and we wont know for about 2 weeks if she caught them but either one could kill her. On instruction from the local government we are on 14 days bare minimum community access while we sit and wait to see if she has contracted either or both. Thanks a million to all the dumbass parents out there and i don't give a toss who I just offended. You should be ashamed of yourselves.
10/1/12
Surgery booked for Alices PEG on Friday 3rd February. this will replace her nasal tube and essentially give her a "petrol cap" type button on her stomach. Why do I suddenly feel a bit sick?
12/1/12
4pm and Alice is in her car seat ready for us to collect George from daycare. I turn to put my shoes on and mad screaming starts like she is being murdered. I look back and Alice is projectile vomiting (a good couple of feet) all over the her car seat, the carpet and the seat in front of her. I rush to get her out to make sure her airways are clear and I get covered with the next wave. It was so bad it was comical. Poor old George has to stay at daycare another hour while I "de cheese" carpets, car seats, Alice, myself and various items of clothing. All that and only 2 hours sleep last night can this get any worse.........quite possibly yes!
17/1/12
So the PH probe Alice had in December didn't ficking record!!! Some one forgot to press the "on" button. Once again she has to endure another tube insertion, then have another 24 hours with two tubes up one nostril and she has to be carried around connected to a hand held computer and go without her meds that stop her stomach ache and reflux for the two days prior. Yet more pain and distress for Alice and probably no sleep for about 3 days for either of us. This is 3 days after she has to swallow radioactive liquid for a barium study and 2 weeks before she has to have an anesthetic and her stomach op. This life is no fun for anyone right now.
19/1/12
Is having an NKH sucks shit day. Just thought I'd share that one. Now I'm off to find a brick wall to bang my head against.
20/1/12
Tomorrow my diary looks like this:
Radiology appointment Level 2 Wellington Hospital 8.45am
Pediatric Day Ward Pre Op Assesment Level 3 Wellington Hospital 10.30am
Childrens Outpatients Level 5 Wellington Hospital 11.30am
Fuck me my life has changed.
20/1/12
Today we learnt that Alice finds X-rays funny, barium studies funny, being weighed naked is funny, doctors who listen to your chest are funny, nurses who look in your nappy are funny, as are those who look in your ears, up your nose and down your throat. In fact so are people who hold open doors, those who serve coffee and even morbidly obese, smelly and slightly mad people that you meet in hospital lifts.
23/1/12
PH probe for poor Alice tomorrow. Lets hope it bloody records this time. Not too sure how we will negotiate the Jolly Jumper though with two tubes up one nostril and a hand held computer attached to one of them. These are challenges I did not anticipate last year.
24/1/12
Its official, tonight Alice is having a Satay night (ie she is 90% nuts). Increase in meds is perhaps due.
25/1/12
Four blocks of half hour sleeps last night. Whoo hoooo! Today can go one of three ways, I will either :
A/ Start laughing hysterically and not stop until I vomit.
B/ Have a nervous breakdown and soil myself in public. Or
C/ Find myself arrested for some sort of random act of violence on a stranger. Place your bets please.
11am No ph probe at the hospital!! Are you fucking kidding me? Option C looking most likely.
26/1/12
After 48 hours of unexplained bizarre behaviours, tics, squeals and mania, it seems the state of civil unrest on Planet Alice seems to be calming down. Glycine troops appear to have withdrawn for now and the state of emergency has been reduced from "Peanut" (completely nuts) down to Satay sauce (extremely nuts) and is expected to be brought down to Scroggin (50% nuts) by lunch time.
All being well we will be in a comfortable state of "Snickers" by tomorrow and hopefully Alice (who will always contain traces of nuts) will be her usual self by the weekend.
27/1/12
I know my funny post are much more appreciated by the masses but tough shit, heres another soppy one. When Alice got sick so many people said the standard "if there is anything I can do" line. So far EVERYONE has been true to their word, not one person has declined a favour I have asked or not stayed in touch or failed to check up on me, pop round or just listen. So thank you to all of you, in particular Joanna Taylor who has yet again come out at some ungodly time to reinsert Alices nasal tube which she has once more yanked from her face. I have some very good friends, far and wide xxxx
28/1/12
Another day, another projectile vomit. If only regurgitated formula was a high demand commodity.
29/1/12
If my understanding is correct then enough research has been done to enable us to put enzymes in our washing powder but not in our children. Perhaps if I add Persil Automatic to Alices formula we may have a cure. At the very worst she will be free of any tough stains and smell like a meadow.
And its just dawned on me that his time next week Alice will be under general anesthetic. I however, will probably be on my 8th coffee, have no fingernails left and be planning a raid on the nurses station for sedatives and opiates.
30/1/12
Picked up another huge batch of Alices vast array of drugs yesterday. While Greg is packing them onto the "drug cupboard", I cant help but think even with the ridiculous quantities of recreational drugs that I managed to sink in my 20s, I still never had a designated shelf let alone a cupboard. What would have been cool and decadent 20 years ago, is really rather sad at 39.
30/1/12 What do you mean, “I look like a cabbage patch doll?
4/2/12
One of the MANY problems NKH kids face is poor muscle tone and weakness. Alice however seems to have the strength of an Olympic power lifter in her legs but the arm strength of T-Rex. As such we now have the unfortunate and rather unladylike predicament of when trying to crawl her arse gets increasingly higher in the air and her upper body goes nowhere. Her face gets planted further into the carpet and she is starting to look like one of those cartoon bloodhounds that just push along with their rear legs and sniff the carpet.
5/2/12
Ok another serious update I'm afraid. This time tomorrow (Friday first thing in NZ, Thursday evening in UK) Alice is having her op. They tell me the surgery is fairly straight forward but putting a 6 month old baby with a potentially fatal metabolic disorder under anesthetic is the worrying bit. I'm sure she'll sail through it but a few good wishes, prayers, healing thoughts, white light and love wouldn't go amiss. Will take a laptop with me so will try keep you all updated as much as possible.
6/2/12
Right thats it I really am at breaking point now. 12 hours before surgery and the hospital call to cancel surgery due a bed shortage. After some rather uncontrollable sobbing, gasping, protesting and finally outright begging, they have backed down. They have told us that because of Alices special circumstances they only want her in when she can have her own nurse and private room and they can't guarantee that tomorrow. I told them I don't care, I'll be her private nurse and if we have to, we'll share a room, just do the surgery. She needs this surgery so bad, 5 minutes after the call she covered me in pumpkin, milk and meds as if to confirm its urgency. Fingers crossed this will still happen.
7/2/12
6am As if I'm not nervous enough, the day has kicked off with an earthquake. Literally, an actual earthquake. Think I may vomit on my shoes with in the hour.
3pm Alice in the recovery room. She is sleeping and doing fine now. No seizures and no adverse reactions so far. Hope to have her home in a few days xxx
9/2/12
Whoop whoop we are home. Alice is shattered and sleeping every few hours and a bit pissy (to be expected) but on the whole she is doing really well and has amazed the doctors. A bit weird seeing a tube hanging out your babies stomach but in 6 weeks they will close it off with a "button" (bit like a petrol cap) and we can get on with pretending we are just like any other family. One step nearer some sort of normality.
10/2/12
To give you an idea of just how tired and unhinged I am lately :
Yesterday I was at the hospital with Alice and Greg calls me on my mobile to see how we are doing, when we are coming home etc. Half way through the call I start swearing because i have lost my phone. I tell Greg I had it in my hand only a second ago and now I don't know where it is. I proceed to run around the hospital cafe looking on tables and panicking, all the time talking to Greg. You would think at this point the penny would drop but no, Greg actually had to tell me where my phone was. Some days I am a danger to myself and others.
11/2/12
When Alice was first in hospital, George was only content to visit if I wore a nurses latex glove and held his hand. Today he insisted I cuddle him with my washing up gloves on and stroke his hair with them. This morning I skyped my 8 year old nephew in the UK who informs me his arm has fallen off so he has built himself a cardboard one to wear on his visit to us in a few months. He is also apparently in the process of making a plastic one for swimming. Once again I question the medical professionals who tell me daughter is the one with screwed up genes, brain damage and special needs.
24/2/12
A promising career in the circus is calling.
27/2/12
Jolly Jumper adapted to accommodate a new feeding tube.
4/3/12
Todays forecast is for unexplained high levels of glycine and strong gusts of craziness. No seizures are forecast but some very worrying behavior can be expected. Showers of random movements and squealing will arrive around lunchtime and irritability and smiling at things that don't exist is expected last into the night. Hopefully the high glycine warnings can be reduced shortly and we can return to moderately insane behaviour tomorrow followed by only scattered outbreaks of oddness by mid week.
5/3/12
Alice is only 50% crazy today, George is only 50% pissed off (fluid in his ear drums) and I am surviving on about 50% less sleep than I would like. I guess thats an improvement on yesterday.
6/3/12
Bed shared with George last night and up 4 times to calm "Crazy Alice" so probably got a few hours sleep max. At 5.30am George sticks his finger in my ear and shouts "Hurray!! Up up" and promptly kicks me out of bed. I have a long day ahead.
7/3/12
1am and Alice has decided to go "full peanut" on me again. Just how crazy can one baby go?
8/3/12
The chaps in the genetics lab have managed to trace the bastard mutant NKH genes in Alice. Waiting for the full report from DNA lab and metabolic specialist and then they can test me and Greg and George.
9/3/12
Hurray Alice has a throat infection. So she is not going NKH crazy, she is just fighting something off and therefore a certain level of insanity is to be expected. All I need to do now is keep her hidden until the antibiotics work and she stops sticking her tongue out, squealing randomly, wobbling her head like Steve Wonder and we can get back to pretending no one has a life threatening illness. Brain damage? Who Alice? Nope absolutely not, don't know what you are talking about. "Denial" is a river running right through my front room.
10/3/12
Well thats gotta be record. Absolutely no sleep last night whatsoever. Alice finally stopped crying at 5.30am for a full half hour. I am quite literally dead on my feet now. Makes the usual 4 hours a night seem like a luxury. Lets hope the munchkin turns around soon for all our sakes. Right I'm off to put my head in the oven.
5pm Oh for ficks sake. I finally get in the shower and out my pjs at 3pm this afternoon at which point Alice pulls out her newly fitted tummy tube. Had to shove it back in (with stomach contents spilling out the hole in her skin) jump in car and get to Wellington General to have a new one fitted before the hole closed up. Now home complete with "petrol cap" fitted and one very pissed off baby. If anyone else would like to shit on me from an enormous height now is looking like a good time.
12/3/12
When I was in my teens I worked with a woman who said she never filled her car with fuel as her husband always did it for her. I thought "what a sad, dependent, weak woman" and swore if that was ever me I'd shot myself. Just realised (when my husband popped out to fill my car with fuel) that I am officially that woman. Pass me the shotgun.
14/3/12
I have moved to Crazy Town with my daughter. I don't know when I will be back but I will be following her in a supervisory role until such a time as she decides to stop being barking mad and behaving like a lunatic on meth. Alice if you squeal at one more person, stick a foot in your mouth till you gag and laugh manically at thin air, our cover will be blown. Just remember, behave like a sane baby when in public, save the mad stuff for home.
15/3/12
OK so sadly it looks like Alice may have had a secret meeting with a friend of the Seizure Monster and they have decided to hang out. This unsuitable friend, we think, is Infantile Spasms. We are awaiting another EEG and the specialist is coming up with some new meds to try but in the meantime has anyone else's kid had a run in with Infantile Spasms? Any info, first hand or otherwise is greatly appreciated. I think Alices cover as a "normal" baby is soon to be blown.
16/3/12
Gone midnight & Alice still screaming & being crazy. Someone throw me a frickin bone here!
19/3/12
I rather smugly timed all lunch sleeps today so me and George can take a nap together in Mummy and Daddys bed, whilst Alice sleeps off her “crazy” in her cot. I ask him what he wants to take for his sleep with Mummy and he chooses a rubber glove and a knife. Worried? Hmmmm a little.
21/3/12
If anyone finds my sense of humour, please keep it safe until such a time as I can be bothered to come and collect it.
22/3/12
Practically Non Verbal George came out with a new word today...."seizure". I need a new life!
26/3/12
My day started at about 3am yesterday, its now 12.40am the following night/morning whatever and we are still going. Alice is tripping her pajamas off and apparently trying to run a marathon on her back. Time to once again review her meds. Actually no fuck it, I'm just gonna start taking her meds and trip out with her. Who needs sleep when you have a cupboard full of dextromethorphan and benzos?
28/3/12
Haven't done a proper update on Alices progress for a while so here is where we are at:
She is proving to be extremely strong and able with her lower body but has lots of muscle weakness in her upper body and is only just learning to move her arms purposefully (she whacks herself in the face less and less now). She can occasionally grab something but can't really keep hold for long. Her crazy behaviour is getting a bit worse (generally just being a bit strange with face pulling, random squealing, laughing at thin air etc) but we are yet to establish if its seizures or just plain old brain damage. She is having another EEG on Monday to try and find out what is going on in her scrambled little head. As you know she no longer sleeps much and seems to be on some sort of "trip" in the early hours each night, but her days are pretty much filled with smiles, giggles and she is now hugging me back and reaching for my face and hands. We start physio in the pool next week and we do a far bit of physio each day at home to help her where she is falling behind. She is a long way from sitting without support but she's getting better all the time. She is still tube fed milk and meds but getting better at eating small amounts of solids. Her prognosis is still very poor and she is still expected to do very little in what time she has but I'm not so sure. Alice is happy in her own little world and she is already a million miles from where we were told she would be ever so we just try to remember that. If any one ever wants to know about her or her condition, anything in fact, please just ask. I don't get offended and I am certainly not easily upset about it all. Thanks again to everyone who follows us xxxxxx
31/3/12
George just mistook a picture of James May from Top Gear to be his "Ganma". Bloody hell I needed that laugh today.
1/4/12
Cant believe I actually had a row with a two year old George this morning about why I wouldn't wear my wedding dress to the park.
2/4/12
Off to the hospital for Alices latests EEG. I wonder what they'll find in there? Nothing but fluffy kittens, butterflies, a few unicorns and some fairy dust I suspect.
4/4/12
Im surviving on 4 hours sleep a night, raising a son and a daughter, I've got a will of iron, a face like a smacked arse, a very low tolerance for just about everyone, slightly crazy hair, and I'm under the illusion that I am the only person around here who knows what shes doing.........oh fuck, I am in fact Margaret Thatcher!
5/4/12
In the words of Edmund Blackadder "The devil has once again shit in my kettle". Alice now has a stomach bug and I am dealing with a tornado of bodily fluid. Off to slam my fingers in the car door just to top of an awesome few days.
6/4/12
Just when you think it can't get any worse I locked both kids in the car. Beginning to think I am a bit of a liability lately.
1am The crazy baby I keep locked in the spare room has gone quiet. I'll quickly change her bowl of water and her litter tray and then I reckon I can sneak back off to bed.
2.30am. Been up for over an hour already with Mad Alice. She's flapping about, squealing, arching her back and generally behaving like a crazy woman (usual nightime behaviour). Each time I go in to check on her she stops, eyeballs me, then grins so wide it looks like her ears might fall off. She then lets out a giggle and then appears to start running while lying on her back. Man I'm exhausted but I still laugh almost every time I go in (almost).
9/4/12
Code Brown in the Jolly Jumper, Code Brown in the Jolly Jumper. This is not a drill, I repeat, This is not a drill.
11/4/12
In a desperate attempt to calm Alice and her night time "crazies" I fashioned a type of straight jacket with a cotton sheet and velcro. I can't believe I am posting this but it only bloody worked! At 2am I trussed her up like a sausage wrapped in bacon and she actually looked at me as if to say "Finally Mummy, you worked it out". I popped a pacifier in and she was asleep almost instantly. If this works tonight I think we may have made a breakthrough.
12/4/12
So Alices DNA results are back. This is how my specialist has explained it to us in a letter:
"The results of the mutation anaysis confirm two pathogenic mutations in GLDC. These are t.ala202val and a deletion of exons 16- 25".
Is it just me, and I must admit my metabolic science and knowledge of genetics is a wee bit rusty, or does that make no fucking sense whatsoever? No explanation followed. No wonder I get so fricking stressed dealing with medical professionals.
16/4/12
Right there is definitely a conspiracy going on here. Alice pulls her first all night sleep since before Christmas and George is up 1am to 4am with tummy ache. Time to rebook that appointment with my head and the gas oven.
4pm
Despite Georges continued protests that he is "Mow-Kay" and does not need medicine or a nap, falling asleep sat upright with a teapot in one hand and a hand held Dyson in the other, suggests to me otherwise.
17/4/12
George kept home from daycare with a temperature and tummy ache and Alice has sustained a concussion by pulling the laptop from the coffee table onto her head. Well I guess we can conclude she is fairly mobile now then. What a fucking day.
18/4/12
Its seems a good bump on the head with a laptop firstly ensures a good nights sleep for Alice but also makes her teeth grow. Two more have made an appearance over night. I wonder what would happen if I drop a PC on her?
19/4/12
Double ear infection for George. Oh joy. If anyone fancies trading kids for a while I'm open to suggestions. My two have a wee bit of wear and tear but are cheap and easy to run. Apart from a dent in her bonnet, Alices body work is in good nick but her engine has been known to cause trouble. George, like Alice looks remarkably good but can be temperamental and is not as responsive as I would like, particularly when first starting up in the mornings. All offers considered.
20/4/12
In breaking news, the laptop has been found innocent of all assault charges against Alice and I am no longer in the running for Worst Mother of The Year Award. Successful covert observation techniques have witnessed an almost identical repeat of Tuesdays drama and the culprit is the edge of the cabinet that her feed pump is on.
It seems Alice can roll at about 100 miles an hour but her head moves considerably slower than her body so it is whipped forward at the last minute at a speed fast enough to give a grown man whip lash. It still happened on my watch but I do feel slightly less guilty about going to the loo for all of 5 seconds now.
21/4/12
Darling Husband. I know who Vivid Entertainment are, I know they don't make ”documentaries” and I know you know that too. I’m knackered and I'll be going to bed in 10 mins, watch it then.
22/4/12
Charlotte and Alice are on their way into Hospital. Alice has 39.5 temp and not doing so well. Will keep you updated. Greg.
23/4/12
Panic over. Alice is home and fine but after a late night ambulance ride I have aged considerably. Just a nasty throat infection shot her temp right up and by some weird coincidence her tummy tube decided to leak all over her at the same time. Doctors have no idea why as its all fine, just one of those things apparently. She didn't have any seizures even with a temp of almost 40 degrees which is good news and is sleeping it off at home. I however got a whole 2 hours sleep and now have a hyper George to look after. He is currently attempting to do press ups next to me (after watching Daddy I assume) but is saying "Poo!! Poo!!" with each one.
24/4/12
As if things weren't bad enough, George has had to have a midday shower. Appears some sort of firework display has gone off in his nappy. If my children could just stop leaking excessive bodily fluids from their various orifices just a for a day it would be really appreciated.
25/4/12
Has come to the conclusion that both her children are completely weird and it has nothing to do with metabolic disorders or missing enzymes.
26/4/12
Thank you Alice for doing possibly your largest shite to date in the doctors office. Thank you for getting it on your socks and then putting your bare feet in it when I removed them. Thank you for requiring so many baby wipes that I ran out and had to ask the nurse for spares and thank you for smelling so bad that I am now bleeding from my gums and loosing hair.
28/4/12
Damn you late night crazies. A full 2 weeks with no visit from the dreaded Peanut and now she's back. Its 3.10am and Alice has been barking at the moon for 2 hours now and showing no sign of stopping. In fact she gaining momentum. Brace yourselves for Hurricane Peanut.
4am. Chamomile tea, clonazepam and melatonin cocktail administered via tube and Alice is sleeping. Would it be naughty to have one myself, for research purposes obviously?
30/4/12
Off to hospital at 7.30am tomorrow. Alice is 3rd on the list for her fundoplication surgery to hopefully stop the multiple daily vomits. She should be in surgery late morning. Will take my laptop with me so if I can get internet will update from there and post pics of the munchkin if I can. Please cross all things that can be crossed. Lets hope its worth it and an end to the relentless spewing.
1/5/12
11am. Just having her IV line put in. Theatre soon. To clarify, thats surgery 'theatre'. Im not a catching a quick musical while she’s under.
All went well. She was a little star. No seizures, thank god.
Its only 7.30pm but gonna try to get some sleep on the pull out bed. Its very tempting to swig from Alices clonazepam stash but I suspect it would be a little irresponsible given the circumstances. Will update more tomorrow (or at 2am if we have a normal night!!)
2/5/12
Pleased to report Alice is awake & full of smiles. Her glycine seems to have gone up so mad as a bag of bananas but she doesnt care. Just nice to see her gummy grin.
3/5/12
Good news: Home with my boys, Alice recovering well and more mobile than ever. Bad news: George still too sick for daycare and Alice has picked up Rotovirus from the hospital. Awesome.
4/5/12
FFS!!! Back in hospital. Alice has a fever, isnt really with it & sleeping constantly. Hopefully just Georges cold & her tummy bug. Will keep u posted.
10pm We are home. Alice very unwell but I declined to be readmitted. She has a tummy bug and some sort of virus (nasty cough and cold) and is still recovering from surgery. However she is always happier at home and unless she starts seizing they can do no more for her on the ward than I can do at home. They have a bed on stand by though (“The usual suite, Madame?”). George has just stopped me putting my head in the oven by getting his foot stuck in a teapot. Man that was so funny I am no longer suicidal.
6/5/12
Don't think I have seen anything more humbling than Alice fighting illness and struggling so hard to get through each hour. Still no smiles and she has slept almost continually for 3 days now. I hope this is the worst of it because if its not I smell an ambulance ride in the air. I assume thats what I can smell, but I could be mistaken.
7/5/12 The tiniest hints of smiles are creeping through. She sounds terrible, coughing, rasping and wheezing but Crazy Alice is beginning to return, very very slowly. Of course there is no good news in this house without the obligatory kick in the arse, so yep now I have it too. I have the voice of Bart Simpsons Aunt Selma, the lungs of an asbestos worker and a nose so full of snot I am having to breath through my eyeballs. Hurray, happy days.
8/5/12
Before you judge a man, walk a mile in his shoes. If at that point you still disagree with him, you are a mile away and you have his shoes.
10pm Poorly girl. Sometimes only Daddy will do.
9/5/12
Greg: Wow you're 40 in a few hours. 40 just seems like a lifetime away for me.
Me: Fuck off you Fetus.
10/5/12
Best birthday present ever!!! Shes coming back to us……….
13/5/12
Sad baby developmental milestone coming up. If you find this type of drivel boring, please look away now.
Alice only held a cracker and self fed herself the entire bloody thing. When she dropped it she picked it up and when she poked herself up the nose with it she tried again and got it in her mouth. She has made a few dodgy attempts recently but today she fed herself the whole thing. Not that impressive for a standard 10 month old I know, but BLOODY impressive for an NKH baby. I will be wearing my Smug Mummy face until bedtime and I don't care who thinks I'm a sad ass.
14/5/12
I know they said she'd never walk but I didn't think her inability to keep her feet below her ears would be why.
19/5/12
Wonders what the world record is for longest tantrum. Think George could well be in the running for an official certificate of some sort at the very least.
20/5/12
Whats with the fucking legs??? Is she going to be like this forever??? My life is like some sort of dark comedy. And yes, this really is how I now have to shop.
26/5/12
Alices latest EEG showed no seizures! Even when she had one of her weird wriggling spells during the EEG there was no seizure activity. Definitely gonna wean her off her seizure meds now as it is looking increasingly more likely she has a movement disorder and not a seizure disorder. Now if she could just stop getting bloody ill every other week we might start getting somewhere.
30/5/12
OK so take the piss out of me all you want but I am ever so slightly excited at being the proud owner of a disabled parking badge. Yes I will be using it to its fullest capacity and I don't care. Anyone wanna question me about “not looking disabled” and I'll shove my blue badge up your arse. Then I’ll be in the awkward position of asking for it back. Maybe I'll just swear at you or something.
31/5/12
George is now a dog apparently and will only eat or drink if he is allowed to "pant" first. He also tells me he is not called George, he is called "Daddy". Any budding psychologists wanna unravel that one for me?
5/6/12
So Alice was up from 2am to 4.30am having one of her private parties in her head, then at 5.15am George climbed into the bed and proceed to say "Mummy Up" and stick his finger in my ear for the next hour. I intend to do absolutely fuck all today. Childcare/housework/personal hygiene etc will be assessed on a necessity basis. If its not necessary it wont be happening.
6/6/12
Gonna stick my neck out here and risk a fall but I don't give a toss. My apparently extensively disabled daughter who will achieve virtually nothing in the few short years she apparently has, WILL be sitting up independently in the next few weeks if not sooner. In fact if she can't do it by her 1st birthday (15th July) then I will eat one of Georges rubber gloves.
7/6/12
Dumbass comment of the year goes to the sales assistant who was trying SO hard to kiss my ass and get me to buy something that she forgot to engage her brain.
I was pushing the buggy with Alice wired up to her feeding pump around a clothes shop. So she basically has a bloody great tube running from her stomach to an electric pump and a bottle of milk hanging off the steering bar like a hospital drip.The conversation goes like this:
Dumbass: "Oh wow what a great way to feed a baby! I don't know why more people don't do it that way".
Me: "Yeah cool isn't it? It saves so much time". (Under my breath: "fuckwit")
12/6/12
George can now add "fear of melted cheese" to his extensive list of things that scare the crap out of him for no apparent reason. Jeez my kids are weird. Thank god the pair of them wing it on their looks.
13/6/12
Note to self: When stealing a kiss from a child with a movement disorder, beware the flying headbutt. A bloody nose and tears in public was the result.
20/6/12
Another NKH Mum has had the all clear. Her new baby will be free of the condition. Thats 4 in as many weeks. Christmas is going to be a super special time for a lot of my new friends. This year is panning out to be a very good one.
27/6/12
Its 4.27am in NZ and Alice has been up barking at the moon since just before 1am. She won't share the joke with me but has been squealing like a piglet and laughing like a mad woman for hours. Considering we are away on a “mini break” and she is sharing our room I have conceded defeat and got up to let her play. She is now partaking in favourite pastime "Maggoting". This is a bit like Planking but involves keeping your arms pinned to your side, legs dead straight and sort of squirming in a vain attempt to move somewhere. In a few hours we have a 2 hour drive and a 3 hour ferry trip home, all of which Alice will no doubt sleep through. I may well jump overboard.
28/6/12 If you’re happy and you know it raise your legs…..
29/6/12
For anyone contemplating parenthood, please bare this in mind:
Today George runs up to me, pulls my hands down and forms them in front of me like a bowl. He them leans forwards pukes into my hands and says "Look Mummy sick" and runs back to play with his train set. Yes this really happened and no I wouldn't believe it either if I hadn't witnessed it with my own eyes.