Now I know for a fact that this was a time in our lives when Alice's behaviour was really starting to cause concern and yet oddly, Ive noticed, I never posted about it publically even once. It wasn't toddler tantrums, these were more the meltdowns that you hear about in autism and they were far worse and lasted longer, than I could possible of imagined. But at this stage I was keeping it to myself.
We still struggled with regular illness, but when she was well really began to push on with multiple therapies to get Alice walking and talking. Her sleep was still non existent, we spent a ridiculous amount of time on hospital visits and I spent a lot of time crying at the relentless highs and lows. despite all of this, the blinding light in the sewage drenched tunnel was the emergence of what became known as"Georgisms".
11th January 2014
First date night in 18 months and Alice gets tonsillitis. She's dosed up and in bed so gonna try and escape for a bit. Story of my life.
12th January 2014
Bit light on info lately as a lot going on but quick update is. We are all Ok with no major dramas. Alice has infected tonsillitis so her breath smells like she has been licking her own bum. Hopefully the antibiotics kick in soon.
13th January 2014
This is what's like to be me: As part of my many new year changes I have enrolled in a yoga course and I am attending Body Balance classes. I buy myself a nice new yoga mat. I bring it home and lie it on the kitchen floor simply to see what it looks like. George lies on it, asks if it's for him. Greg walks right across it bare foot bouncing up and down saying "nice. Kinda squishy isn't it"? Alice then crawls over, lies on it and takes a massive shit. So huge that I have to go and shower her down. Whoever is writing the script for my life.Really?????
27th January 2014
15 hours into a stomach bug and finally my first sip of water has stayed in. Please keep everything crossed that Alice isn't next. On the plus side, I reckon my jeans will look awesome on me soon.
30th January 2014
3.30am and our friendly household stomach bug has finally taken down our leader. That's a 100% hit rate including my mother in law who is visiting from the UK. I can confirm that Gregory Underwood still holds the title of worlds loudest vomiter. I hope to record some audio as proof. Poor Alice is sleeping on towels as we have given up washing her bed and we have discovered that you can even fire puke out of the hole for your G tube if it's not vacating your other orifices fast enough. Interesting vomit fact of the day
3rd February 2014
First born packed off to first day of school. No tears from either party but a bit of bottom lip wobbling from both. Didn't go straight to the gym as planned as frankly the whole process made me feel rather sick. Actually starting to think I may be doing this with Alice one day. Not mainstream school of course but a school of some sort. Lets hope tomorrow goes as smoothly.
4th February 2014
Apart from just after it was fitted, today I experienced the first ripped out G Tube. Soon followed by stomach contents shooting out like water from a Killer Whales blow hole because Id just filled her tank. How the fuck did my life end up like this?
11th February 2014
Don't know whether to do one of my rants or smile sweetly and carry on regardless. Children's hospital threatening me with pulling all nutritional and dietary support for Alice if I continue to feed her blended food (ie REAL FOOD). I have been doing it for 2 years now and it's the ONLY way to stop her puking or shitting like an active volcano. Might take a formula poo and a blended food poo to my next visit and see which one they think is in Alice's "best interests".
12th February 2014
George: Mummy? Can you juggle with sausages?
14th February 2014
Alices MRI or her brain and optical investigations booked for 11am on Tuesday. She needs to be anesthetized so I am every so slightly crapping myself, especially when they call today to say "any medical conditions or medication we should know about"? Are they fucking serious?
17th February 2014
First of two day trips to the hospital. Two hour round trip, collect three months of meds and supplies, physio session, another hip x ray and flying visit to the Social Worker. No school for George so he has agreed to be my "Glamorous Assistant" for the day and he will no doubt be naming his price of a Mc Donalds Happy Meal before the day is out. Home in time for tea, ready to do it all again at 6am tomorrow.
18th February 2014
Plan for the next 12 hours: 11pm give Alice last meds of the day 2am give Alice last feed before anesthetic 6am give Alice last meds before anesthetic 7am leave for hospital Need to factor some sleep in there but not sure where it will fit.
19th February 2014
Baby girl is under. I am feeling a bit lightheaded. Either I inhaled her gas as I held her tight and kissed her while she went under or I am not the hard ass I like to think I am.
8pm
Everything went fine today but I am glad its over. It was a straight forward anesthetic for a brain MRI and to have a proper check done on the inside of her eyes. Alice was in good health and has reacted well to her two previous anesthetics but for some reason I didn't cope very well today and came dangerously close to fainting. Joking aside I do think I inhaled some of the gas (I was holding her cheek to cheek and kissing her face as she was thrashing about) but I also think nerves and stress got the better of me. So many of Alices friends deal with far worse than this on an almost daily basis but I think maybe our relatively good run of recent health had made me a bit complacent about the harsh realities of NKH and it crept up and bit me on the arse.
Anyway, we should get the results in a week or two so I will post the findings when I know more but for now she is sleeping soundly and hugging Peppa Pig. Thank you so much for all the support today. It was a day when I really needed it, even if it wasn't anything big in the land of NKH.
20th February 2014
George : Mummy I am a grown up you know.........I am just a small grown up with baby teeth. Me : Glad we got that straight. Now do you need me to wipe your bum or not?
24th February 2014
Just got back from the hospital and will update what I can before Alice wakes from her nap.
In short the brain scan showed exactly what I had expected (and kinda hoped for). Her Corpus Collosum, the strip that aids communication between the left and right hemispheres of the brain, was normal. In NKH you expect to see it missing completely or thinner than usual, but Alices is apparently in tact. She does however have more white matter than you expect to see in a child of her age but only fractionally more. So little in fact that the MRI report calls it "within normal ranges" but the neurologist we saw today said he would have to say it was below normal in his opinion. Basically when you are born you have lots of white matter in your brain, by toddlerhood most of this has developed into grey matter. Alice's brain is just forming slower than normal and is immature in its development. This does not mean it wont form but it is taking longer than in a healthy child.
So overall I am extremely pleased. I knew she was doing too well in terms of NKH to have any major brain abnormalities but I also knew she is so far from a "normal" child that there must be something different going on inside.
In terms of her hip x rays, there is no cause for concern right now. As it shows no deterioration from her last x ray, the doctors are confident that now she is beginning to weight bear it may well negate the need for any surgeries or interventions. They will review again 12 months.
The results of her eye investigations will be given to me when we see the specialist next month.
Her glycine levels were normal at 315 but her pediatrician like its nearer the 200 mark so I am waiting to see if we need to increase meds or not.
Her movement disorder was discussed at length and again I have refused to add another med to her regime. I hate the fact that she takes any meds for it at all but after lowering it a few weeks back and seeing her throw herself backwards and fling herself about, I have resigned myself to its inclusion. In fact one week on after a backwards flying headbut my jaw still clicks when I eat, so I think the clonazepam may be here to stay.
25th February 2014
Reading George the story of Iron man from his Marvel Comic books and half way through he looks at me very seriously and the conversation goes like this: George : Mummy, but why is he called Iron Man? He never does any ironing. Me : Good point George. Maybe I should be Iron Woman. George: No you should be Iron Mummy because you do a LOT of ironing.
1st March 2014
3am George: Mummy, wake up. Im just going for a wee then i will get into your bed for a cuddle. Me : Thats nice dear (straight back to sleep) 3.05am George: Mummy wake up I need to get in.
Me : Hurry up and get in and please dont kick me in the night (straight back to sleep)
3.30am George: Mummy wake up. Could you just tickle my back for a while?
Me : Are you serious?
George : Yes please it will make me very happy and then you can sleep. Mummy? Mummy? Are you awake....?
4th March 2014
Collected a rather down and distracted George from Pre School today. He informed me that he took the plunge and asked Caitlyn to marry him (he is 4) but she declined. I told him I was sorry and asked if Caitlyn felt perhaps she was too young or if there was someone else involved. Apparently Caitlyn has been married twice before and from now on she will only be marrying her Mummy. George is understandably a bit deflated. 6th March 2014
Why is it my mood, temperament, attitude, outlook on life and ability to cope with the world is directly linked to the amount of food Alice puts in her mouth. Three requests for food today, a lot eaten and its only 1pm = Everything is awesome and anything is possible type day. Tuesday refused all food, knocked puree out my hand, screamed and protested = Shitty depressing and I need a divorce and to leave my kids type day.
11th March 2014
Two interesting things happened today. Firstly I aged a decade in the blink of an eye and secondly I discovered what my heart tastes like when it unexpectedly landed in the back of my throat. This amazing experience was thanks to Alice who decided to not only fall into her deepest sleep ever this lunch time, but to really up the fun factor she did so with her eyes and mouth wide open. I am not talking eyes half open when asleep like a lot of NKH kids or her mouth a jar, I am talking dead fish on a platter type eyes and mouth open. In a final twist of dramatics the light coming in from behind her green curtains added a deathly insipid green hue to her face. That split second when I went to wake her from her nap, I absolutely, genuinely, hand on heart thought today was the day. Initially I froze and couldn't move. I just stood there thinking "I'm not ready for this". Next thing I know I have leapt into her bed and rather than try to gently wake her, I for some reason thought it appropriate to scream her name and jab her in the ribs with two fingers!!! At this point try to think of the scene in Pulp Fiction where John Travolta injects Uma Thurman with adrenaline and it will give you some idea of what went on. Needless to say Alice, who was enjoying a very very deep sleep was scared shitless by my actions, she screamed pretty bloody loudly, I nearly puked, she then went mental with fear (as you would) so I had to pin her down and tell her it was just Mummy (ie Mental Paranoid Mummy). I then cried and hugged her so hard that she farted loudly and we both laughed. Funny now. Entirely not funny at 2.45pm today.
16th March 2014
Me: George!!! Stop throwing things indoors. I have told you enough times, when will you learn? George: Next year in Pre Primary Mummy. Thats when the real learning starts.
20th March 2014
Dear Old Person with a slight limp. I can only assume that the waving of a disability badge through your windscreen suggested that you were slightly pissed at me getting the last disabled parking spot. Furthermore that the shaking of your head and huffing implied that you thought I was far less deserving than yourself. Whilst the enormous great piece of pink and grey machinery that I struggle to remove from the boot of my car, might look like I choose to have a buggy that weighs almost a quarter of my body weight, it is in fact a wheelchair. The ridiculously tall nearly three year old that I then wrestle into said chair, is not lazy or spoilt, she is in fact unable to walk. It was however noted just how well you could in fact walk when you realised what an arse you had been and you trotted off at break neck speed in case, God forbid, you actually felt the need to apologise.
Oh and by the way, I deliberately opened my door really wide and banged into yours when I left. Have a nice day and enjoy your minor disability and the 60 or 70 years you have probably had of good health.
26th March 2014
Dear Gwyneth and Chris, In my 20s I may have done a fair bit on "Unconscious Coupling" but what the hell is "Conscious Uncoupling"? Is that the bit where the alcohol and drugs wear off and you leave?
28th March 2014
So apparently if Alice was born 15 days earlier, she'd be starting school in this coming January. As it is she wont start until the following January which will be 2016. Think I may have to give the umbilical cord a teeny bit of slack and think about a couple of days day care in the coming year. This is a such a weird scenario. Alice and the word "school" even in the same sentence seems odd. Before I know it she'll be bringing home unsuitable boyfriends, have a tattoo, a facial piercing and be wearing skirts that show her bum.
30th March 2014
Please tell me there is a point when parenting becomes easier. I'm done.
1st April 2014
7 independent steps from Alice . Thats all I have to say about that.
3rd April 2014
This was shared by a friend with an NKH child. Now I have very mixed views on this. I firmly don't believe in God, and I want to vomit when I hear the old "God only gives you what you can handle" bullshit and the many other crappy versions of this sentiment. But bear with me on this one and take a read. Its actually really quite beautiful.
Did you ever wonder how mothers of special children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a special child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a special child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!" "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice." 4th April 2014
Stop the press. Someone (yes it was a man) actually asked if they could help me with Alices wheelchair today and lifted it into the car for me. First time for everything I guess.
(As at 18th March 2020 this has still not happened since).
7th April 2014
Two hours into Operation Pacifier Removal and I'm about to donate Alice to the Salvation Army.
11th April 2014
Playing shops with George this morning and he sold me a pretend ice cream for $35,000.00. He only wants cash (lots of coins apparently) and if I dont pay he is going to "bomb the house".
12th April 2014
Thanks George for peeing the bed last night for the first time since being toilet trained 18 months ago. I was even more grateful that you chose to save it for my bed and moved in for a spoon just before you decided to piss all over me. Much as I love you and much as I told you it wasn't a problem and " we all do it sometimes ", please dont ever do that again and if you really have to, please piss all over your Dad.
14th April 2014
I love that one of Alice few clearly pronounced words is "farty". As in "Blimey Alice, have you pooed or was that a farty"? To which the response is usually a big grin and a proud announcement of "Farty"! I think that's enough vocab to get her through her early years. I shall ease up on the speech therapy now.
18th April 2014
George : Why is Daddy not at work today. Me : Because its a special holiday day called Good Friday. George : Does that mean I cant be naughty today? Me : Yes George, well done! Thats exactly what it means. (Why was I not smart enough to think of that myself?)
19th April 2014
Me and Greg are such great parents. We are eating Alices Easter Eggs for her. Not because we want to of course, but because we just cant risk her choking on them. We make so many sacrifices for our baby girl and endless selfless acts with out a moments thought for ourselves.
20th April 2014
Two and a half years to get Alice to eat ice cream, a couple more months for cheetos, she is almost three can she can now kind of eat mashed veg and she can suck the life out of buttery toast but she cant swallow it. In contrast to this, on first presentation with a Kit Kat today she scoffed the lot, didn't let so much as a crumb or drop of saliva escape her mouth and chewed and swallowed it with the skill of a semi professional chocolate fiend. I feel slightly conned.
21st April 2014
Day 35 in the Big Brother house and Alice was giving her nominations for eviction.
27th April 2014
No matter how hard I tried to find any sympathy for Greg being woken at 5am by George literally sitting on his head and farting, I couldn't. In fact its still the funniest thing I have heard in a LONG time.
5th May 2014
Drug run to the city tomorrow. Not nearly as illegal and exciting as it sounds.
10th May 2014
Would like to thank both my kids for being on their utmost worst behavior today. Awesome work Thing One and Thing Two, even by your standards this has been a corker of a day. I am now off to take a long walk off a short plank. Oh and its my birthday. Yay for parenthood.
11th May 2014
Mothers Day began with George telling me that "Daddy" would be in with my breakfast shortly but in the meantime he had saved up a fart for me.
Mothers Day ended with him asking me to check his ass as it hurt and me removing a piece of a board game from his butt hole.
15th May 2014
11th March 2015 Alice took her first step and I am gonna take 15th May 2015 as the day she started "walking". This morning she walked all round the kitchen with her special shoes on. She didn't fall or wobble and she sat down when she had finished rather than dropping. She even stopped and stood half way. I haven't cried much for Alice since diagnosis. If I cried for Alice I'm not sure Id stop. This morning I allowed myself to bawl like a baby. 2 year and 10 months old to the day and my baby girl is walking. Shes bloody walking!!!!!!
16th May 2014
Not sure what makes me prouder, that fact that Alice self fed herself almost half and apple today or the fact that she has added the word "shopping" to her limited vocabulary. So she has: shoes, farted, cha cha (front bottom) shopping, pretty and a few others. Think I will work on "credit card" and "diamonds" next.
20th May 2014
Great evening spent at the out of hours doctors with Alice with a suspected UTI. Three failed attempts to get a pee sample from Alice and I've now given up and put her to bed. Will be waiting for her drugs to kick in and then spending my evening pouring water in her G tube and hovering at the nappy end with a small pot and hoping she pees whiles shes sleeping and is non the wiser. Things are shaping up for a great week.
22nd May 2014
First conversation of the day. Me (through Georges closed bedroom door) : Morning George, how are you? George: I am in my room with my rubber gloves on. I will be out later. Me: Take all the time you need.
27th May 2014
So my day began at 2.22am precisely. This was the moment that Alice squealed her delight at the arrival of the late night Crazy Train. Due to her being a minor and unable to travel alone I am still compelled to get into her bed and board with her. Whilst I tried to rest next to her, she partied her nappy off till well after dawn. It seems you can take the glycine out the girl (well a bit with Sodium Benzoate) but you cant take the girl out of the glycine induced madness. Several months of stored up mental behavior were unleashed and I can tell you, my girl knows how to party. She sang to her toys, chatted to people who wernt there, blew raspberries, clapped her hands, leapt all over me and roly polyed (is there such a word?) around her bed. At 5.30am I admitted defeat and left her to say her goodbyes to the the other passengers alone. I got a full 15 mins sleep in my own bed, before Greg got up for work, followed 20 mins later George popping in to tell me what the next half hours worth of toileting would include for him. Roll on bed time.
30th May 2014
So we have a start date for Alices 3 month intense physio program, 2 days a week at the childrens hospital, starting 16th June. Great news, except for the fact we also got accepted onto a 3 month intensive communications course starting the same week for 1 day a week. So for the next three months it looks like me and Alice (and once a week, me, Alice and George) will be doing the 2 hour round trip to the city to spend half a day at the hospital. As of 16th of June life will be going on hold for three months so I suspect updates and humorous Georgisms will be thin on the ground. Of course I am very very excited but I am not sure I am looking forward to it. Then again this is what we moved 3 and a half thousand miles across the continent for.
5th June 2014
Whatever happens from here on in, I have succeeded as a Mother to Alice. She just ate an entire bowl of breakfast cereal containing twelve sultana bran buds. Not mashed or pureed but each one whole like any normal child would. OK, maybe scratch the "normal" bit as to be fair she blew raspberries, clapped her hands, head banged and giggled like a loon throughout, but it Im taking it as a slice of normality. In George news he has his second invite to a Fairy Party in two weeks and will again be the only boy. For a four year old he has more girlfriends than he can shake his poorly pronounced "stick" at. He is either going to be the next generations George Clooney or a modern day Liberace. I am not sure which, but either way I am as proud as punch.
6th June 2014
It is with great sadness I have to announce that Poo the hermit crab has left this mortal coil and gone to the great rock pool in the sky. He was a valuable member of this family and everything we could have wished for in a crustation, he will be sorely missed. Poo was a quiet and gentle crab and sadly never recovered from having two of his legs ripped off by Cheese. The ensuing trauma and distress at being in isolation (for his own protection) was clearly too much for Poo and after a long battle with depression, PTSD and the adjustments that come with having two limbs ripped from your body by an apparent friend, he vacated his shell and lay down to die. A suitable burial will take place at the weekend (he is chilling nicely in the freezer until then) and once a small period of mourning has taken place, we will be purchasing Poo Two. Who will be bigger than Cheese and can hopefully bring order back to our crabby brood. Sleep well my friend and may you grow back your limbs and roam free forever.
16th June 2014
Off for the first of many intensive therapy sessions for Crazy Alice. Will try to keep people in the loop as much as possible. Here begins a very very long three months, a hell of a lot of driving, a lot of over priced fuel for the car, no doubt a huge amount of tears and tantrums (me and Alice), a lot of driving around PMH looking for a damn parking space and a heavy sprinkling of stress. Lets get this girl walking and talking.
4pm
Well meaning Mum at the hospital : Wow shes incredible, look at her sign language!! Me: Eeeerm....She didnt say anything, thats a movement disorder. (Cue tumble weed and awkward silence)
21st June 2014
WARNING Annoyed Special; Needs Mum post will follow. Walking frame on wheels for old people $100 to $400. Same thing but for disabled children $2,500. I used to think parents of sick, disabled and special needs kids were just a bunch of people who moaned because they were secretly pissed at the world. Lets be honest, all they do is complain and campaign, right?. Three years ago I got a short sharp lesson in why! $2800 for a car seat that does bugger all more than a normal one, just shy of $5,000 for a buggy and another $4,300 for a high chair. $300 for shoes, $1000 for a neoprene vest and pants to help still her. The list goes on. Sure we'd sell our house if we have to and we'd do it in a heartbeat if its what Alice needs but what really pisses me off is it DOESNT cost that much.
22nd June 2014
George : "Sniff my bum Mummy. It smells of banana milkshake perfection"
23rd June 2014
Big girls bed with no cage. So cute I can almost forgive her for peeing on the robotic vacuum cleaner tonight.
25th June 2014
Me: "Honey, any chance can you do Alices tube feed so I can go and wash my hair"?
Greg: "Not really, I just put on hand cream and I'm watching a tutorial on how to fold a fitted sheet."
And people wonder why I'm stressed and overworked
26th June 2014
Apparently if you want to do anything really bad and get away with it, you should do it on an airplane. This is because Police cars cant fly. I think it shows intelligence and ingenuity and I'm so proud of my little potential terrorist.
27th June 2014
Does being able to speak fluent Comedy Swedish count as a milestone if you child is disabled?
28th June 2014
George: Mummy, why isnt that little boy moving?
Me : Because hes a mannequin, Honey.