Looking back at this period of the journey, its what I wasn't posting that surprised me most. Much like before the updates are happy and light hearted but in the true spirit of Facebook Smoke and Mirrors, this was far from the truth. Alice was no longer a happy child, despite the fact I only posted pictures of her smiling. She was in constant pain and distress, she had relentless bowel issues, vomited daily, hated everyone and anyone, including me a lot of the time. She screamed for hours at a time and it was clear these wern't tantrums. This was a whole other league.
It was a period in time when the first of my now infamous "poo stories" began to emerge as a Facebook staple, when her inability to sleep and ever changing weird behaviours really were concerning me. It was when I first realised what complete c*nts the general public are when they think you shouldn't be in a disabled parking spot but it was also when Alices first signs that she may eat by mouth began to show themselves.
Id also like it noted that in this year alone we lost 7 of the NKH family and when we are so few, that is a BIG number. I have chosen not to include those posts.
2nd July 2013
EEG at Princess Margaret Hospital tomorrow at 9am. Apparently Alice has to be awake for 4 full hours before and for me to avoid rush hour I will have to hit the road just after 6am. So that's a 5am start for us girls. Fingers crossed there will be no changes from her last two EEGs and if there is, hopefully it will be some signs of improvement in the speed that her brain fires. As yet we have seen no seizure activity on either scan but NKH kids often have unseen seizures even if they appear to be seizure free. Here's hoping for a good result and that no bugger wakes me up tonight!
3rd July 2013
No bugger slept!! George up three times needed hugs and pamol for his cold and Alice woke on and off till 2am. Will be an interesting day. Alarm didn't go off so up half hour late. Eaten toast, coffee thrown down neck and have tackled the birds nest that lives on Alices head. Ready for a girls day out at the neurology clinic. Its like Thelma and Louise for the mentally insane.
4pm. Home and head scrubbed of EEG head glue
7th July 2013
In a normal house you put your kids to bed and assuming they go off to sleep, you creep back in to turn off night lights, remove books scattered on the bed, give them a quiet kiss and tip toe out praying they don't wake. In this house I sneak in and remove a rubber washing up glove from each of my sons hands and slowly drag another pair out from under his pillow. Same deal every night.
8th July 2013
After yet another hideous vomiting, gagging and choking attack, I rocked Alice in my arms and kissed her head like I always do when this happens. After it passed, her eyes were all red and full of tears and she looked me in the eye and for the first time EVER, she signed "I love you".
I asked her to do it three more times just to be sure and she did. But the first was unprovoked she just lifted her hand and patted my chest as if to say "thanks Mum, I love you". We have to adapt out signs as Alice struggles with fine motor etc but I pat her chest and say I love you and we pat her dollys chest and say "we love Dolly". If Im really honest, she has done it once before and that was to bloody Bananas in Pyjamas on the TV. But she really does love them so I can let that go.
9th July 2013
So yesterday George asks me turn him into a frog. He tells me he has seen it on TV and it can be done, its easy and I "have to do it". I tried to explain that my powers do not extend to turning children into frogs but by this time he is jumping up and down saying "Pleeeease Mummy Pleeeease".
"Ah ha" I thought, "I get what hes up to. He wants me to pretend to do it and he will leap off round the room making frog noises and we will all laugh and George can be a frog for the day".
So with my best theatrical effort I shout "Iggerty Ziggerty Zaggerty Zog, George Underwood you are a FROG! " I leap in the air and pretend to throw a spell at him and punctuate it with a big BANG which will hopefully signal George to begin his frogginess.
George, who is waiting patiently, looks at his feet, then his arms and says very seriously "Oh, that didn't work did it Mummy"?
"Apparently not" I said.
"Its OK, you tried" and off he skulked to his room.
I don't think I have ever felt such a huge disappointment to someone in my life.
10th July 2013
So we are only a few days off two years old and this is where we are at. Hospital visits are still pretty relentless since arriving in Oz. Its tough as its a 2 hour round trip to PMH (Princess Margaret Childrens Hospital) but I don't want to complain as Alice is getting the most amazing care and everything they are throwing at us I am biting their hands off to get. We have been weighed, measured, assessed, had PT, OT, Speech Therapy, seen metabolic specialists, dieticians, general paediatricians, neurologists, bowel specialists, we have a disability advocate (who is bloody awesome), a carer two hours a week, we have had another EEG and we are waiting to hear back about an MRI, orthotics and an ophthalmic appointment.
Alice is doing better than we could ever have imagined and we are a million miles from where we expected that we would be. However what people don't see with Alice is despite the fact that she makes great progress and is continuing to move forwards, virtually everything about Alice is broken to some degree. Nothing works as it should and anything out of the ordinary is potentially a sign of a bigger problem. I haven't posted about it till now but I have been desperately worried about Alices sight. Over the last few weeks her left eye is not focusing and looks to the side of you, not at you. A lot of NKH kids are blind to varying degrees or have problems with their sight and it is another area where Alice dodged a bullet as far as her condition goes, so to see her deteriorating is terrifying. Having raised it at the hospital today we are waiting to have some investigations but for the time being we are hoping its a plain old lazy eye that can be corrected with a patch or glasses. Right now looking like a Pirate is the least of Alices worries but its something my girl could really do without. I wont elaborate on anything digestive (the stories I could share!) but all things tummy and poo related feature heavily in NKH. She is crawling and saying a few words. Probably all sound the same to the untrained ear but she has about 5 I can understand. She has signs for "I love you", "milk", "finished" and "again/more", she can pull up on furniture and take a few steps if I hold her hand. She gives big sloppy open mouthed kisses, she gives cuddles, she has terrible hair, she is gorgeous, she is my hero, my shining star and she is loved more than she will ever know.
11th July 2013
Just fitted a g tube on Alice's birthday doll. Not a sentence I ever envisaged writing.
12th July 2013
So I have told my husband that if he wants to leave me and take the children its really not a problem. It will be tough but I will take a year off and go to Bali and lick my wounds. I will seek solace in cocktails and lying around doing nothing and try hard not to reminisce fondly about wiping other peoples arses, cleaning up vomit, listening to 24/7 crying or complaining and having no personal time to myself at any time ever. Maybe in twelve months time we can try again. Oddly Greg doesn't think that is such a great idea and thinks I may have an ulterior motive.
14th July 2013
Things have gone a bit tits up these last few days and we are on a bit of a downer. Alice has an infection in her tummy tube that we cant seem to shift, a new formulation of an existing med seems to be causing tummy ache, she is vomiting daily again, her dystonia playing up is really upsetting her (sharp uncontrolled movements) and she pretty much cried from the moment she opened her eyes this morning, until she went to bed. Something is clearly wrong and she is far from happy but as is always the case with Alice, this could be something as simple as a tooth on the way or we could end up in an ambulance before the nights out, you just never know. So we havn't actually done anything today for Alices birthday, like we had hoped. In fact I simply showered and changed into fresh pyjamas at 6pm and Alice went to bed early. None the less tomorrow we will have a two year old and that in itself is pretty bloody amazing. Hopefully she will be on better form in few days and we can do bit of a celebration then. We love you Alice.
18th July 2013
Peppa Pig Live tickets went on sale at 9am, sold out by 9.06am. WTF! Is this what my life has become? It used to be all night dance party tickets in the UK or piss ups in the winerys in New Zealand. But even they were easier to get hold of than Peppa Fucking Pig!!!!
I will do everything and anything for Alice so now it Georges turn to see his Mummys commitment to him. So will someone tell me who do I have to screw around here to get Peppa Pig tickets?
19th July 2013
So todays victory and milestone was independent bathing. At 2 years and 3 days we were finally able to sit Alice in the bath on her own and let her splash around and do her own thing. As a baby we held her in a baby bath or baby bath seat but as she got older we have always had to bath holding her on our laps. Alice has always sort of fallen into a grey area with disability equipment as she is too disabled to use things able bodied kids of her age use but too able bodied to use disability equipment. Any disability bath seats or bathing equipment has been a non starter as she has screamed and bucked and kicked to escape and it has just been safer to wedge her between our knees, give her a quick scrub down and remove her before she screams herself sick. Go us.
19th July 2013
Soldier down. Alice is sick again. So far just a shocking cough and a snotty nose, but already she is struggling crawl and sit up. Fingers crossed its a short, mild cold and doesn't develop into anything else as we are 4 weeks off making it a year with no admissions to hospital.
Sadly there has also been a noticeable decline in her hair and I will be increasing her conditioner and detangling spray accordingly. Lets hope we can get these curls under control and stabilise her "do". Prayers and the number of a good hair dresser are appreciated.
21st July 2013
Trying to explain to George that hitting is not good as he told Alice he was going to hit her and throw her in the bin. I said that one day bigger people come along and hit harder.
George : And would they hit so hard my head would come off?
Me: Eeerm maybe
George: and would it go BANG and explode, like a bomb?
Me: I dont know honey.
George: and would my brain come out in the explosion?
Me : Lets just agree not to hit Alice or put her in the bin.
George: and would I be dead?
Me: Right who wants Peppa Pig?
22nd July 2013
The rough days with Alice continue. She is very unhappy about something and today we had pretty much non stop crying and so many vomits and gagging episodes I lost count. Her g tube is still slightly infected and doesnt want to shift but we are up at the childrens hospital on Friday seeing her specialist so hopefully we can come up with a plan. We have taken one of her meds right back and we are seeing improvements in her movements and wobbles but the withdrawal itself could be causing symptoms of vomiting, agitation, distress etc .On the upside of all this Alice is saying "cud-uh" pretty relentlessly (her version of "cuddles") and each time I pick her up she snuggles into me and signs "I love you". That alone makes it all worthwhile.
23rd July 2013
Well at least we now have some idea of whats happening. Alice has a tummy bug and both ends have now joined the party! You can always tell with Alice something is up long before it happens and this time has been no different. Will give it one more day and get her on slow pedialite feeds through her tube and then I will accept defeat and go to hospital if we are no better in 24 hours.
She is not tolerating milk but because she had fundo surgery it means its staying down (despite her bodies best attempts to throw it up) so her meds are getting into her system at least. NKH sucks shit.
24th July 2013
Morning meds and 100ml electrolytes given over two hours. No vomits, no explosions and a surprisingly happy Alice. Lets hope it continues.
26th July 2013
So a good day clearly does not necessarily mean a good night will follow. Spent most of the early hours bed hopping between mine and Alices bed as she kept waking with tummy pains. Today she is more grumpy than yesterday but I am putting diluted veggie soup through her tube and still no vomits, gags or arse detonations so hopefully things are improving. Have to make the two hour round trip to the hospital with both kids in tow tomorrow so not looking forward to that. Especially when they need to weigh, measure, take bloods etc from and already pissed off Alice.
28th July 2013
After a good few minutes of waving and talking to her reflection in the oven door, Alice felt confident enough to move in for a kiss (with tongues). Fortunately she kissed herself back and the reflection did not give her a slap for being so forward. This is hilarious at the age of two, not sure how cute and funny I will find it if she makes it to 15.
29th July 2013
George has requested that I no longer go into his room and remove his rubber gloves after he is asleep. Do I respect his wishes or do I sneak them off and hope he thinks they fell off by themselves? This is a dilemma I did not see myself having at any point in my life.
30th July 2013
Well I am not sure I would have believed it if I hadnt seen it with my own eyes. Today I gave puree another bash. I try and fail every few days. We usually take the odd mouthful here and there and a few weeks back she even allowed me to kinda push about 8 mouthfuls onto her lips, but its not something Alice enjoys or has ever shown much enthusiasm for. Anyway today I pull all the usual silly faces and try to make it sound as interesting as possible and she smiles and opens her mouth! She opened her bloody mouth for food. And thats not the best bit, she then signed for MORE!!! This was repeated about 10 to 15 times before she got bored. As always not much was swallowed (thats not important at this stage) but she took full spoonfuls into her mouth, pushed it around, swallowed some and most fell out but she opened her bloody mouth each time the spoon came near and asked for more. Insert happy dance here.
31st July 2013
F*cking reflux, f*cking Sodium Benzoate 4 times a day burning holes in Alices stomach and throat and making her scream like she is being murdered, fucking NKH and all it brings. F*ck off and leave my daughter alone. If I could I rip your f*cking head off.
2nd August 2013
"Mashed veggies are suddenly lots of fun! Not in my wildest did I expect this.
4th August 2013
We are still not really swallowing much food but today Alice threw a hissy fit today when I told her we had finished with her plate of chips and tried to take it off her. I gave her a second plate and she attacked it! Twice she went for food I was eating today and she has added "cracker" (well Ka-kar) to her vocabulary and is using it regularly. I just hope that the enthusiasm and interest is enough and that the skills to chew, move food around her mouth and swallow can be taught.
6th August 2013
Oh how life changes. Three years ago nothing used to piss me off more than Georges clothes coming out the wash ruined with food stains no matter what I did. Today I put away Alices clothes, clean but stained with food. I smiled like Id swallowed a coat hanger.
8th August 2013
Right now the NKH family have a lot of our kids dealing with unrelenting seizures. I mean back to back, day and night, god damn awful seizures. We have others with problems keeping food and meds in and even tolerating milk or water. We have others with unexplained illnesses that are either putting them in hospital or the parents on full alert at home. Alice is MILD. For everything you see Alice deal with and hear me talk about, we have the mild version, NKH Lite, Diet NKH, NKH Zero. My daughters daily struggles are complete wank and yet we get labelled "mild". If you can multiply by 100 the fight me and Alice have on our hands, you have good ole Classic NKH. This post of is for all those children who did not get off lightly.
10th August 2013
Bagging up drugs on a Saturday night means something very different nowadays.
13th August 2013
Lots to update on Alice so forgive me if I skip through as quick as I can. Firstly her eye is fine. For those of you who didnt see the pics, she managed to split her top eyelid open by face planting into a kitchen door. I simply heard a bang and a scream and George initially informed me she simply fell over, but further investigations has establish that the two of them were play fighting and George shoved her off him. To be fair Alice goes for George most of the time but is too weak and uncoordinated to follow through any of her challenges, so a quick shove from an annoyed 4 year old is always going to end badly. Anyway shes got 3 paper stitches, a black eye and it has not stopped her launching herself at George at all. We had an assessment on Alices ankles and knees last week and it didnt go too well. We knew Alice had problems but even the podiatrist was shocked. It seems Alice has about 170% flexion in her ankles. To give you a visual of what 170% flexion looks like, the podiatrist could almost get Alices toes to touch her shin bone and when moved side to side she could almost stand on her ankle bones. The won't rule out surgery but told me not to even worry about that yet. The upshot is walking my well be a lot further off than we were thinking. Her GI issues seem to have calmed a lot lately and I think we have probably almost cracked 2 weeks without a vomit, which is just unheard of for Alice.
15th August 2013
Woke at 6am this morning to hear my husband spraying his hair with fly spray and not hair spray. What did I do? I stayed in bed, pretended to be asleep and snorted into my pillow.
18th August 2013
George is asleep with two rubber gloves (one orange, one blue), my make-up mirror and his toy kettle. And they tell me Alice is the one with issues.
19th August 2013
Alice back in bed at 8am after wearing herself out with three diva tantrums in 90 mins. This does not bode well for a good day.
20th August 2013
Sandpit fun with George
23rd August 2013
So today George tells me he wants to go "looking for sticks". So off we go to the park where he finds a "very big stick", he asks me to hold his "big stick" whilst loudly telling others at the park how he loves "sticks" and do they want to see and even play with his "lovely big stick".
Why is this funny?
Because George cannot pronounce the sound "St", he pronounces it as D.
Sadly the ground did not open up and swallow me at any point.
25th August 2013
So for his birthday George wants a Shrinking Machine a Freeze Ray and a Fart Gun. Letting him watch Despicable Me, three times in two days has clearly left its mark.
30th August 2013
Two things happened today. First was I got a call with Alices EEG results. It showed no seizure activity whatsoever, which is bloody fantastic. We know she doesnt seem to have seizures but these kids can have silent seizure activity so its good to know things are still quiet on that front. It did however show the she had a "slow background". I was tempted to say "yep that makes sense, I come from a slow background too" but i suspected my humour would not translate to a neurologist from Calcutter and so I resisted. In short it could mean something and it could mean nothing. With Alices brain damage and difficulty in getting messages around her little fried head it is what you would expect to see and it has shown on her previous EEGs. However I am told perfectly normally functioning people can show this too. So its all good and nothing to worry about. The second even of the day it Alice attempted to take her first step. Now before we get excited please note she "attempted" it and did not actually "take" it. She was stood leaning against the sofa and just decided she would walk out into the middle of the room. All the intention was there and it looked very promising until her tiny weak ankle folded over, swiftly followed by buckling knees and she dropped to the floor. Why is this failure so great? Because she has never attempted a step unless holding my hands and because she fell in a really controlled and ordered manner. She simply fell to the crawl position and off she went. Like I have said before, walking is not going to be easy for Alice as her ligaments and muscles in her legs have a lot more problems than we realised. However, this just makes me more convinced than ever that as soon as we get splints on this lady, she will be off.
6th September 2013
Anyone who followed Alice in her first year will be well aware of her "Night-time Crazys" that keep both of us up virtually all night for a good six months. Well she hasnt taken a late night trip to Crazy Town for almost a year now, but last night she was clearly ready to get out her orthopaedic dancing shoes, board the Crazy Train and hit the town hard. She was all dolled up and ready for action but 2am and she partied hard until just after 5.30am. What before used to consist of lots of squealing, humping the bed and laughing has now developed considerably. Where she was previously confined to a cot and had limited movement, it seems and extra year in age and a double bed make a world of difference. New signature moves consist of roly polys, attempting to either do the "Downward Dog" or stand on her head (I am not sure which she was aiming for), hours of raspberry blowing and singing continually pulling the cord on her musical bear and what I can only assume was some sort of break dance moves. As Alice is a minor I am naturally obliged to accompany Alice on these mad nights out and I sat quietly on the side lines while Alice shook what her mother gave her (ie crap DNA) and twerked the night away. As the sun rose and Alice eventually wound down I managed a full half hours sleep before George leapt out of bed. Today I get the pleasure of looking after both kids as George doesnt go to daycare on a Friday and all on less than 4 hours sleep. Someone shoot me now.
8th September 2013
Soldier down, yet again We have a very poorly and extremely pissed off Alice. Up with her all night and looks like I will be holding her all day.
Have a horrible feeling its an ear thing. Out of hours doctors for us later.
9th September 2013
Home from the out of hours doctors and Alice has a stonking infection in her left ear. Poor lamb managed an hour nap at lunch before she woke screaming in pain again. Its now 2.30am and apart from that breif one hour nap, shes been awake pretty much since 3am yesterday. Maxed out on pain relief and shes still clearly in agony. Second dose antibiotics at 5pm will hopefully start to turn things round. At least we now have an explanation for Thursdays glycine spike and night of mad behaviour.
10th September 2013
Not sure what was worse yesterday. The fact that George farted and followed through or the fact that he felt the need to tell our elderly neighbour who was dropping off some home made marmalade.
"and it just splatted out my bottom"
12th September 2013
There are few certainties in life, but sure as night will follow day, epic nappies and arse vomits will follow a course of antibiotics. Alices ear infection seems to be on the way out but I don't think we will be venturing far from home, or a shower, today.
15th September 2013
Can't help but notice that an awful lot of unauthorized and unwanted aging has taken place lately.
17th September 2013
Trip to Perth (hour each way) for a days fitting of things like wheelchairs, feeding chairs, walking aids etc for Alice, and George too sick for daycare. Interesting day ahead which will almost certainly be full off back to back meltdowns from all three of us for very different reasons. Alice because of her intense fear and hatred of anyone who doesnt live in her house, George because he is full of snot, miserable and simply because he is 4 and me because I am sleep deprived, only have one pair of hands and the endless screams of the two horrors will no doubt bring me to my knees in a public situation. Hi ho hi ho its off to Bedlam we go.
20th September 2013
Huge huge Happy 4th Birthday to my first born. George you are very weird, very grumpy, very loving and very handsome. Dont ever stop being eccentric, nudey, cuddley and caring. Well maybe stop the nudey stuff in the next few years but the rest is all good. I love your funny ways and hilarious spin you put on everyday without even trying. I wouldn't have you any other way.
No thats a lie, I'd have you do as you are told a bit more, be less grumpy, I'd have you able to blow your nose instead of wiping it on your sleeve, less farting, not so much roaring at strangers, maybe stay in your own bed past 2am, sleep in later than 6.30am, eat your dinner, dont lick people, dont discuss your poos in public.........
5pm
So the Law of Sod has once again prevailed. Alice has been hit with Georges cold and as always it has hit her like a ton of bricks, a sledge hammer and wrecking ball all at once (I am just thankful no naked chlamydia ridden Miley Cyrus was straddling said wrecking ball). My poor lamb can only squeak as her voice is gone, she cant sit up and shes crawling like a Newcastle lass on her way home from a New Years Eve piss up. Not panicking just yet but I think we have a few tough days ahead. What worse is we have Georges BBQ breakfast tomorrow at Kings Park and at this rate one of us is going to have to stay home and mop up snot. Will we EVER get to bloody do things as a family???? For the record I Fucking Hate NKH #IFHNKH.
21st September 2013
So Georges birthday hermit crabs have been named. We have Cheese, Poo, Winkle Winkle, Bottom Bottom, Mummy and Dinosaur. Cheese and Poo keep fighting. Dinosaur keeps mounting Mummy and Winkle Winkle wont go near Bottom Bottom. Which I guess is a good thing. Alice is too sick to take to the park for Georges birthday party and I have been hit with it too so I'm at home looking after a very weak, floppy and snotty girl. Not sure if I'm sadder about not going or the fact that George didn't bat an eyelid when I said I wasn't coming because I needed to look after Alice. This is obviously the norm for George and thats what really stinks.
23rd September 2013
Up all night looking after Alice with the same cold myself. Both kids at home today so I think coffee will feature heavily in my diet. Alice no better, if anything slightly worse. Please cross anything you can cross that today it turns for the better.
24th September 2013
IFHNKH. My daughter has enough to deal with, with her shocking cold without the added shit that comes from being genetically a bit fecked in the enzyme department. Looking like we may have seen a return of seizures today. Pick on someone your own size and leave my two year old alone.
25th September 2013
Doctors today and nothing of any concern was found. On the down side we had another seizure this morning, only very brief but identical to yesterdays ones. She is sleeping right now and I am hoping we are over the worst and the seizures are simply a by product of her illness. If not then thats something else we need to tackle when she is well and maybe just be thankful that we got away with seizures for this long. Many NKH kids have never known a day free of seizures and triple figures in a day is not unheard of. On balance we got off very very lightly. Hoping to have my girl back soon.
26th September 2013
Hate to post depressing status updates but frankly I am feeling pretty defeated. Alice is not really getting any better. Whilst I am seeing some improvements like a few smiles and some babbling, its apparent she is becoming less responsive and more "out of it". We had another seizure this morning that I saw, another I may have missed and we are pretty sure she had one this evening. On the up side they seem pretty quick and dont seem to phase her too much but they all seem to be of the "absence seizure" variety. Her temperature took another spike just before bed tonight and even though shes been in bed for almost 2 hours we can hear her through the monitor, doing her crazy thing and she is quite clearly going off on one of her mad adventures. I have a script on standby for antibiotics but personally I think its viral and possibly a full blown flu. I'll be honest she has me worried, its a long time since I saw an illness hit her this hard and I had forgotten how much we "loose" Alice when her brain gets swamped with glycine. Her eyes are either half shut or open and wired. The lights are on but no one is home, she cant sit up, she falls when she crawls, she cries nearly all day, cant sleep, her arms are flying all over the place and thats before we even think about the bloody seizures. In fact lets not think about bloody seizures.
27th September 2013
I know people want an update so I'll give you a quick run down. In short I noticed a big improvement the minute she woke this morning, this lasted about an hour and she was "gone" again and we had another seizure. We have both just taken a nap and again she has woken with a big improvement on the last week. So I think we might be at the turning point. Seizure increase or new appearance with illness is totally normal (if slightly shitty) for NKH so its a case of suck it up for now. Anyway I have my big girl panties pulled up high today and I am making a coffee so I wont be a sad ass until our next drama.
28th September 2013
Roll up Roll up come and see Alice The human Poonado. Be amazed as she shits through her clothes and soils all her bedding. Gasp as she then rolls in it, gets it on her hands, all up her back and rubs it in her hair. See the spectacle that is Alice then crawling across the lounge trailing crap on the floor as her Mum turns away from the change mat for a split second to grab the wipes. Feel the tension as she is wrestled to the floor and then dragged to the shower fully clothed to be hosed down like a convict. Roll up Roll up you wont believe your nose....
29th September 2013
Now we are getting somewhere in regards to what is wrong at least. The second most hated three letter illness in this house has struck again. Its looking like Alice has RSV. For those who were following me at the time of Alices diagnosis you might remember she was readmitted to hospital a week after being released as she had contracted RSV then. That time it was very serious she needed oxygen support and was extremely ill. Basically its a viral lung thing that can turn to pneumonia and take weeks to get over, but the first time you get it is the worst. It is extremely serious for prem or newborn babies and kids with underlying medical problems.
So we went to A&E today due to so many seizures yesterday and the fact that she now has quite obvious lung crackles and got her checked over. They said we can be admitted if we want but I declined as Alice is much happier at home and unless she needs something other than monitoring its really not worth the risk because she always comes out with something else! Anyway I am kind of pleased, it explains why we are not getting better yet, it explains why she is having seizures it explains the phenomenal poo yesterday and why she is so out of it. Last time she was pretty much unconscious for a week. So the bottom line is as long as she gets no worse, we just sit and wait and manage at home. If no change by Tuesday or she gets worse they will have everything ready for an admission. Thanks again for all the support, it really does help.
29th September 2013
George has clearly been spending too much time with his Dad. Yesterday we are walking round the supermarket and George is holding onto one of my fingers. I assume its because he wants to hold hands but doesnt want to appear too keen. After about 5 minutes he looks at me and says:
"Mummy, I have been pulling your finger for ages now and you still havent farted"!!
30th September 2013
Nothing good to report. Seizures are wank. Nuff said.
5th October 2013
I let out a big sigh without realising it and George says "Whats up Mummy"?
I said "Nothing George I just seem to spend my life tidying up"
To which he replied "Wow......thats pretty sad.......and very boring".
Couldnt have said it better myself.
7th October 2013
OK so I have just blown my top in public and nearly murdered a pensioner. I assume she thought muttering under her breath about me was a safe way to insult me. Fraid not lady. It went something like this:
As I wrestled Alice into her car seat,already having sustained a good head butt to the eye this morning and I cursed the fact that the back support I have ordered is not here yet and the DSC cant seem to pull their fingers out their arses to get Alice a proper wheelchair, a couple pull up into the disabled space next to me and rather loudly with the window down the wife said something about "these spaces arnt for people with pushchairs" complete with huffing and dirty glances.
At some point in the next nano second I seem to have turned into a Fish Wife with a bad case of tourettes. I lent right in her window and loudly asked her what the problem was. I noticed some interesting changes had also happened to my volume control.
Of course the conviction of her snide comments had suddenly faded and she pretended to be looking in her bag and said "No dear I was talking to my husband".
And now things really went up a notch. I screamed that my daughter was terminal, cant walk, talk, is tube fed, brain damaged, has seizures, a movement disorder blah blah. A very nervous husband now tells me I have made my point and starts to reverse out as clearly they have changed their mind about shopping. You think Id have some shame and stop at this point but no, 2 years of unsaid anger was about to be deposited on these poor sods. I opened my car, got my disabled badge and whacked it on their windscreen. My parting words were "see this? Its for disabled people not old lazy ones". There was a lot more swearing than that and I imagine I was bright red and shaking but you get the jist.
Best thing is they waited for me to go, then re parked and walked fully able bodied to the shops. Not so much as limp, in fact they moved pretty fast, cant think why.
Did I over react? Absolutely. Do I care? Not at all.
I know things will get far worse as Alice gets older but Im afraid muttering under ones breath about anything is like a red rag to me, but muttering about Alice and our situation will always be met with completely unreasonable and slightly unhinged behaviour. End of rant.
9th October 2013
Help is on its way. My Mum is currently winging her way across the world to see me and the kids for the first time in a year. George is leaping around more than usual and has his fart gun ready to take to the airport, Alice is as mad as ever (if a little windier) and I am frantically trying to tidy up a house that looks like its been ransacked. The next three weeks will go way too fast. My Mum is on her way!
10th October 2013
Blood results back, not good. All round meds increase for Mad Alice. Have I mentioned I fecking hate NKH?
Oh and today she hasnt stuck her hands down the toilet but she now licks the sole of shoes. I secretly love her weirdness.
15th October 2013
Just a quickie as I am aware that no news may be seen as bad news, but we are all good. My Mums is here so busy having fun and less time for FB. Alice is cooking with gas, no seizures since she kicked her RSV bug, in fact she is better than she has been in a long time, letting me feed her puree (badly but still trying), a few new signs, using her words again, very playful and full of love. Even with her intense hatred of all people who dont live in her house she is giving my Mum kisses and cuddles and climbing all over her. She still wont let her pick her up but thats pretty good progress for 5 days. George is still completely mental but adorable. Sadly he left a lot of his rubber gloves in the sun and they perished so he needs to build up his collection again, he tells my Mum she is "very round" and that he loves her all day long and that he has named his inflatable alien "Grandma" in her honour. Oh and random tip of the day from George was "Mummy if you ever set fire to your bottom, you must sit in a bucket of water and it will be OK".
16th October 2013
George in bed with his new friend. He has named it “Grandma”.
17th October 2013
As you know Alice only has a few words and whilst they are clear to me they are poorly pronounced and difficult for the untrained ear to understand. Well, I am pleased to announce she has added "Cha Cha" to her repertoire. What is a Cha Cha? Well its what we call her "lady bits" and she has started repeating it. So of Alices extremely limited vocabulary a pet name for her privates is one of them.
23rd October 2013
So today we went to Princess Margaret Hospital (PMH) to get some tests done and hopefully some answers on alices squiffy eye. The good news is she seems to have very good vision and tests showed no signs of long or short shortsightedness so she wont be needing glasses.
However, as always with myself and my children though, that would be a boring day and so not content with a simple hospital visit and then home Alice decided to make things interesting. About 10 minutes into the one hour drive home Alice decides to take a crap. Not just your average crap, in fact not even what you would call an above average crap, but a mother f*cker, holy moly, out of this world, beyond your wildest imagination type crap. So choking on the warm air and checking my gums for hemorrhaging I drove to the nearest shopping centre at break neck speed. Me and my Mum take Alice from the car and realise the enormity of the situation. Not only has she leaked from her nappy and covered her white leggings in their entirety but she has soiled her dress, her hands and appears to have placed a sodden poo nugget right over her g tube site! Mum runs to a clothes shop to buy Alice a whole new outfit while I charge to the mother and baby room with what I am sure is green fumes trailing behind me. Its 27 degrees and spring in Australia and I am not kidding when I say she was attracting flies. I lost count of how many wipes I used, I threw away all her clothes and after what seemed like an eternity I had to accept this was a poo that no amount of wipes could solve. So yep I stripped her and washed her in the sink of a public lav! We then dressed her in new clothes still with the labels on and slunk out of Garden City Shopping Centre before we could be arrested for environmental abuse and crimes against the senses. This week my Mum has got a first hand introduction into life with NKH and we've probably given her thyroid cancer.
25th October 2013
Today Alice has really pushed me to the limit. Her endless crying when I leave her side, her fear of everyone but me and her constant tantrum throwing when I dont do what she wants. Worse still, the minute I go to her she laughs at me as if you say "Yeah, bitch, thats right, I'm in charge in this house, not you". Finally I decided that it was time to treat her like a normal child so the next time when I went to her to calm her (she was going purple, had snot running from her nose and had almost cried herself into a vomit) and she laughed at me, I told her off. I kept a straight face, despite her giggles, and told her I was not happy and this had to stop. She then smiles, crawled over to my lap and patted my chest (our sign for "I love you") then sat back on her heels and threw her hands out the the sides (our sign for "this much/lots"). Putting two signs together like that is pretty advanced and certainly not something Alice has ever done before. Its like she bloody knew she had to do something special to win me over so she pulled out a trick that I couldnt help but melt over. Damn you Alice Underwood, you are sly and smart and manipulative. And I must reluctantly admit, that yes I am your bitch and you are in charge.
28th October 2013
You know life is getting on top of you when you walk into the bedroom of your healthy child with syringes, milk and plastic piping with the intention of tube feeding him. Thats one way too mentally scar a sleeping four year old.
29th October 2013
Awesome development today. Alice just let rip a real good one, I turned round and said very theatrically "Who was that? Who just farted"?? Alice smiled and proudly signed "Me". Never did I dream Id be having such important conversations with her.
30th October 2013
Dropped Mum at the airport with George and drove home at night with him in his PJs. Stopped to get a bottle of wine on the way home and the Bottle Shop was just closing for the night. We run across the car park to get there in time and four year old George screams at the top of his lungs "Wait, dont close my Mummy needs alcohol"!!!!!!! We got more than one laugh.
7th November 2013
Georgeism of the week: George: MUMMY!!! Look what I can do? If I think really hard (pulls concentrating face) I can move my bum cheeks with out my hands!!!!
Me: Wow thats amazing George, can you show me again?
George: No because I just farted and that isnt ment to happen.
10th November 2013
Its nearly 3am here and I have been up since just after 12am. Alice has decided to board the crazy train and it looks like she going for a long ride. The ability to roly poly round her double bed and stand up against the bars, banging and shouting random babble is making for a very loud night.
12th November 2013
Three Grade 4 Poonados in as many hours, status has been upped to Defcon One with a high alert at Code Brown level. The President has been informed and we suggest only essential travel is under taken at this time. Damage to soft furnishings, clothing, bedding and a manicure has so far been reported but it is expected to be far more widespread in the coming hours. Stay safe out there people and say a prayer for those in the eye of this shit storm. We dont know how much more we can take.
13th November 2013
Water gun fights in the garden with the kids, awesome fun. Alice played her role as paralysed solider caught in the cross fire with amazing grace and enthusiasm. However a direct hit to the ear from George has left me partially deaf. I guess there is no war without its casualties.
15th November 2013
STOP THE PRESS. Alice has just eaten a whole frozen yogurt on a stick. The whole damn thing. No complaining, no fuss, no choking, no hitting away. Just lots of "again, again", sticking her tongue out to get more of it and grabbing it with her hands to shove it in. I had to roll each swipe onto her tongue but she swallowed what came off every time and didnt even dribble enough to mess her clothes. She can do it, she clearly swallowed all of it. So now at least we have something we know she loves and she is not threatened by the manner its given (ie no spoon in the mouth) so we can start working on her skills.
16th November 2013
The baby sling is a hit. Not that she is a baby but hopefully it will prevent me needing back surgery.
18th November 2013
Nothing serious but we are off to the city for another day of hospital appointments and tests. Alices last two blood tests have not been good and showed significantly raised glycine for no apparent reason so we need them taken and checked again today. Heres hoping we are finally making progress as the poor girls doesnt need to go through blood drawing this regularly and I really dont want to have to up her hideous meds any higher. Damn you glycine.
20th November 2013
Thing One and Thing Two at their weird best. Yes George is now into sink plungers.
22nd November 2013
So Alice can now "quack" and "snort" rather well. We cant walk, barely talk, we cant eat or drink and have trouble using our hands for almost anything but we can do an excellent roly poly, walk on all fours with our legs straight, blow raspberries like a pro, twiddle her hair with her toes and now quack and snort. Who said she wouldn't achieve anything?
24th November 2013
Two hours in my life: Somehow Alices pees out the leg of her nappy all over herself. Wash clothes and redress Alice. Put Alice down for nap and she promptly explodes. Change Alice, change and wash bedding. Put new bedding on and put Alice back down for a nap. Speak to hospital who agree enough is enough and this needs looking into. Put vile nappy in fridge and race to local hospital for a poo container. Get poo container, race home remove nappy from fridge and scrape horrendous green slimy shite from nappy into container and race back to local hospital. Hospital tell me they made a mistake and need three samples, am I willing to get nappy out bin in 30 degree heat and attempt to harvest more poo? Tell them not bloody likely, they can wait for the next delivery and go home. Get home, take over from Alices emergency carer who is with her. Alice wakes from nap. Her bed is now covered in some mystery clear vomit. Hurrah, her G tube has leaked stomach contents all over her freshly cleaned bed. Ask Alice is she intends to leak from any other orifice. Alice looks at me blankly and I just put my head in my hands.
26th November 2013
Safe bed (ie cage) made by my awesome husband. She can now party in safety.
27th November 2013
Just to show how quickly things can change for us, Alice is clearly not well. The hospital are taking a look as some of her poo (I dont envy those people!!!) as the continous explosions are still happening and she is getting weaker and grumpier by the day. I am however hoping this goes some way to explain this relentlessly rising glycine. Fingers crossed the lab finds something and we can get on and treat it. I really dont have the fight in my right now for yet another unexplained NKH down turn that requires weeks/months of investigation before you find a solution. Please can we all visualize some normal poos?
28th November 2013
Dont even know what to post right now as there is nothing in my life but shit. Literally it is full of shit. More is coming out of Alice than is going in, no item of clothing or soft furnishing is safe and just as I think it cant get any worse it does. You've heard of Black Friday and Bloody Sunday well today will be known as Brown Monday. Looks like its a few days of electrolytes and meds and NOTHING else. More poo samples delivered to the lab.
29th November 2013
So today is the day Alices gets her AFOs (ankle splints) and its a strange mix of nerves and excitement. Excitement that Alice could be walking before too long and nerves because its a 2 hour round trip, about an hours appointment and Alice has an incredible volatile bottom still. Its going to be like a game of poo roulette and I am just praying she has the good grace to not shit all over the nice man who made her orthotics or the therapist that will be helping her stand in them. I am almost inclined to give Alice a good squeeze before we set off in the hope I can force out anything waiting to burst into the world. No doubt some incredible cringeworthy poo story will follow shortly.
30th November 2013
Well the Poo Gods were looking favorably on me today. Alice let rip 20 mins after getting home and only minimal clothing was damaged. AFO fitting didnt go well as Alice just decided to throw the mother of all tantrums for the full hour. I guess when you cant voice your objections, going full scale mental is the next option. We have them home and she'll wear them sitting but is refusing to try and stand in them. Hopefully we can build up bit by bit. Off to chase the poo investigators for their findings and will hopefully have more fascinating fecal info for you all later.
1st December 2013
Not impressed with her legs splints and refusing to move.
3rd December 2013
Christmas List of an overstressed, undervalued Mum. Dear Santa, I know you are very busy making all sorts of pointless bollocks for people who really don't need half the crap they ask for and watching over the clueless as they drift around their kitchens in pinafores worrying about the quality of their Christmas cookies and whether they will win wife of the year, but I wondered if you could stretch to a few of my requests: 1/ I would like my daughter to not requires meds from 6am through to 11pm for just one week please. 2/ I would like my son to not cry like he has is being murdered every time he bumps his toe, head, hand, has a splinter and eye lash or needs a plaster removing. 3/ I would like more than 3 hours consecutive sleep and (I know this is a big ask) more than 6 in total a night. 4/ I would like one week without a hospital, doctors, therapy visit or a late night dash to pharmacy. 5/ I would like to go 24 hours (scrap that make it 4) without worrying about what new weird sign, raising temp, odd noise, change in poo, or quirk my daughter is displaying. 6/ I would like some quiet. 7/ I would like to not think about alcohol everyday by about 1pm. 8/ I would like to be normal and go back to being oblivious to all this and thinking teething is a big deal and a cold or tummy bug for my kids is the end of the world. 9/ I would like more than two date nights with my husband every 18 months. 10/ I would like to poo without at least two people trying to talk to me or climb on my lap. 11/ I would like too pee when I need to go and not when I have developed a UTI from holding too long. 12/ I would like to eat sitting down. 13/ I would like my daughter to eat. Anything. Ok maybe drink something? 14/ I would like a new and stronger back. 15/ Oh fuck it lets be honest here Santa, I would like miracle. Got any spare?
4th December 2013
And so today another person was stupid enough to tell me I had no right to be in a disabled parking space. Not to my face of course. Why cant people just bloody ask if I have a badge? Or better still LOOK at my dashboard. She waited until I had struggled with Alice flaying her splinted legs around like Pinocchio with Parkinsons and holding Georges hand firmly with my free hand and a bag slung across my back. This lady then got out her camera phone and announced loudly that she was going to take pictures of my car as these spaces wern't for "lazy Mums with buggies". I thought I snapped last time. Clearly I did not. I went berserk. I wont repeat what I said and I wont elaborate on the language but it was screamed at a volume I was unaware I had anymore. Every other word was a swear word and after reeling off a list of Alices bigger problems I sunk to insulting her personally. By this time I had charged at her with both kids and she had backed right across the car park. Traffic stopped and so had people loading shopping into their cars and just when I thought I was about to cry, she stupidly found some balls and told me I had a "hang up". Then she really got it in the ear about what NKH was, what we deal with and where our kids end up. Thank god she didn't make some comment about why we don't have a wheelchair as 6 months waiting for the sodding thing and still 6 weeks before it gets here, I could quite possibly of shoved Alices shitty old buggy right up her fat backside. Anyway the mad midget with tourrettes clearly proved scary enough for her to scuttle off and Im left with George asking my why Im so angry and an entire car park not knowing whether to comfort me or call the cops on me. This time is wasnt funny, I didnt go away feeling like I had stood up for Alice, nor did I feel proud or brave. I felt shitty, insulted, embarrassed, and wondering whether I need therapy!
5th December 2013
What shall I do on this beautiful sunny summers day? I know lets spend it at the hospital in Perth. I think we'll have a long sweaty drive there in 35 degree heat (thats 95 degrees to my American chums), then take in a few sites at the neurology department, see what vile bugs we can collect whilst waiting in the outpatients department, we'll do a bit of blood letting and scream at the ladies in the blood lab (I havent told Alice yet, this bit is a surprise!) then we could spend an hour or two standing a queue at the hospital pharmacy, if we are lucky we can collect a few more bugs, and finish it up with a jumbo bag of syringes and tubes from the supplies department and an exciting sit in traffic all the way home at rush hour for anything up to two hours.
6th December 2013
It seems Mount Alice is still very much an active volcano.
9th December 2013
In bed at 6pm with a banging headache and Greg taken the horrors out to give me some peace. Is it wrong to be secretly praying Alice will do her bi daily arse vomit in his care?
10th December 2013
Had not anticipated the "do babies come out your bum hole"? question quite so soon. No it wasnt from my husband.
11th December 2013
I couldnt never have believed the joy half a banana could bring. I am so happy I could (ie have) cried. No naughty innuendos please, but Alice ate a fricking banana!!! Properly ate it. Mashed to with in an inch of its life but she bloody well ate it. A few dodgy faces were pulled and the odd look of horror but she ate the whole damn thing except about two teaspoons that were on her bib at the end. Two and a half YEARS to get to this stage and she is giving it her all. Alice Underwood you are the most inspirational person I have ever had to pleasure of being shat on by. I love you.
12th December 2013
Two hours until we have to get in the car for the one hour drive and two hour appointment at PMH (Princess Margaret Hospital). Thats 4 to 5 hours away from home depending on traffic. So far Alice has not pooed in three days which means the following detonation will be of epic proportions and there will, without doubt, be casualties. Please pray that we either see some action soon or it holds off till bed time. The prospect of playing Poo Roulette on the motorway and at the hospital physio gym is not something i look forward too, especially when the odds are not in my favour. If only I could give her a strong coffee or a cigarette.
13th December 2013
Well I hadnt updated on the poo situation as there was no explosion only a good amount of semi normal shite. However, seeing as two people has actually inboxed me for a poo update I can only assume a fair few more are genuinely interested. Firstly it just shows what a bunch of weirdos are on my friends list and secondly that Alices arse clearly has quite a following. Whilst I would love to think you are all sat around so concerned about Alice and her dodgy bowels that you are compelled to ask for updates, but I am not daft and I know that you really wanted was a good graphic poo story, involving me being covered in crap and various new words being used to describe the astonishing amounts of waste that such a small child can produce. So I am sorry to disappoint but she waiting until 20 mins after we got back from hospital, did three nappy fills in quick succession. Kind of poo triplets I guess and all were brought into the world with minimal fuss and mess. Yesterday was much less stressful as i wasnt waiting for the Poo Hammer to fall all day but as of about lunch time today the threat will once again become more real.
17th December 2013
Kim Kardashian says "Never forget to take time out for yourself" as advise for new mothers. I say "You are a clueless over privileged twat" as advise to Kim Kardashian. Oh and while you are at it find Gisele Bundchen, glue yourself to her and jump off a rocky cliff face. Here endeth the lesson.
19th December 2013
Finally we got the bloody wheelchair! And earlier than expected.
24th December 2013
Right now I am 100%, without doubt convinced I have the daughter I was ment to have. I am over joyed that I got her and everything that comes with her. Tomorrow I will no doubt be back to teetering on the brink and pissed as hell at the injustice of it all. But right here and now in this moment, it is all good.
25th December 2013
Happy Christmas everyone. Im signing out for a few days.
28th December 2013
George tells me Alice will walk by the time she is three. He also tells me he will help other children wipe their bottoms when he starts school next year, that eating stones will give you tummy ache, that there is a space ship at the park in Secret Harbour (but it doesnt have a lid) and that you cant eat bum cheeks as they are too chewy. Frankly, you cant beat a good conversation with George.
31st December 2013
Happy New Year people. May all your wishes come true.