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Part Eight. Facebook Posts. Second Half 2014

The Georgisms were coming thick and fast at this stage, in fact I think they possibly peaked.

Alice's relentless therapies and hospital visits were all we seemed to do but finally I was getting the help I'd always wanted so I was saying "yes" to everything we were offered. Her tantrums were off the scale, she began self harming and attacking me regularly, she apparently hated me and anyone who dared to make eye contact. Much like before, I only posted the good and on a rare occasion I caught I picture of her smiling I plastered it all over Facebook. These post give the impression we were doing so well but we wernt. We were in a very very shitty part of our lives. I knew autistic type behaviours, violence and aggression came with most milder cases of NKH but I had no fucking clue it could be as bad as it was, so soon in her life and this was just the beginning. Regurgitating these posts for this blog has made me see clearer than ever just how much we sugar coat our lives for social media.

3rd July 2014

What a day!!! Left at 10am for the hospital and home just before 5pm. Therapy went Ok but Alice was being a Madam for most of it so not a huge amount of co operation on her behalf. On the upside though her hip x rays were sufficiently good to sign us off from the orthopedic clinic. Kids that walk late or don't walk, don't form sockets for their hips as its the pressure of weight bearing that does it. If you don't do this or do it too late, the bone doesn't mould around the hip ball and you end up with dislocating hips ie a hip ball sat on a flat socket. Anyway long story short Alice has sockets!!! Not huge ones but they are apparently forming nicely and each X ray has been an improvement on the last. We are now just under "supervision" which I think is like parole for hips. Next meeting with the Hip Parole Officer is 6 months time. I'm now off to to do a gym class having only eaten a banana and two biscuits since 9am so will now doubt faint or dry retch within the first 5 mins. Hopefully no hilarious stories about ambulances being called to a Body Attack class in suburban Perth will follow.

12th July 2014

I really hope I am not speaking too soon here and tempting fate, but we are finally at a stage with Alices eating that we have cut back to one blended tube feed a day. She still doesn't drink much so she has 90% of her water through it, all her milk and all her meds, but we are now pushing towards about 75% of her food being physically eaten. Really beginning to think one day we might just be tube only for meds.

14th July 2014

Just fluids through the tube today as Alice ate so well. Boom, back of the net!

16th July 2014

Fark my son is scared of so much. Took the train into town with him today to go to the science museum. We get on the train and its packed so have to walk through several moving carriages to look for somewhere to sit. George walks through each carriage and promptly drops to a crawl to safely negotiate the bit of floor where the carriages join each other. He does this every time we enter a new carriage. Thank god I was behind him so he couldn't see my face and my stifled laughter. We got some awesome looks and needless to say I was not the only one pissing myself laughing.

18th July 2014

Holy fucking Moly. Night out for first time in......erm forever and Alice falls and splits her chin wide open. Over 2 hours in A & E for her, George and Vanessa (her carer) and we race home to get there just in time to see it glued and taped up. Thank Christ I wasn't the one at home to witness this and try to deal with it with a cool head. As expected George found the whole thing more upsetting than Alice and me and Vanessa were far more teary than my little girl was, despite the fact that she appeared to have a second mouth gaping beneath her her chin.

21st July 2014

Back to school tomorrow for George. Time to remove his nail varnish.

26th July 2014

The difference between boys and girls: Alice: Splits chin open so wide that you can almost see to the bone and requires gluing and taping. Minimal fuss. George: Apparent splinter in foot that no one can see but him. Requires bandage and no weight baring all night. Maximum fuss. Alice: Daily cleaning of poorly healing chin wound that has taken several new knocks and looks like something out a horror movie. A few tears but lies still and simply asks for a cuddle after. George: Daily brushing of teeth. Complete agony and fear of me giving him ulcers if I touch his gums. Borderline breakdown and panic attack. Alice: Removal of G tube, cleaning of site and shoving in and re inflating new tube. Not happy but takes it like a champion. Sad and asks for cuddles after. George: Attempted removal of dried yoghurt from his chest. Child birth like pain and screams. He informs me he is bleeding and will be left with a "scarf". This particular mission is so painful it is aborted.

27th July 2014

Any nurses out there prepared to give me an opinion on Alices horrible chin situation? Dont know whether to complain and get it stitched or take their advise and just suck up the 2mm wide gaping yellow and red wound that now goes across her entire chin because the glue didn't hold.

28th July 2014

Going to be a party pooper and NOT post anything positive about today. Alices chin continues to look gross and started bleeding yet again. Up at the crack of stupid O'çlock tomorrow to drive to the childrens hospital and insist a plastic surgeon reopen it and start the whole thing over again. Will have both kids in tow so lets just hope George doesn't faint.


All done. Full anesthetic, two rows of stitches , steristrips, antibiotics, the trauma of a ripped out IV and 9 hours in hospital and we are on our way home.

30th July 2014

Nothing like a bit of early morning judgement and under breath mutterings from the Disabled Parking Space Police to start my day. Luckily it was in the Church car park on the grounds of Georges Catholic School and she only got a "Theres a badge in the windscreen, if you have a problem". Different venue my dear and I wouldn't have been so polite. I have dealt with far ruder and they've come off far worse. Oh and thanks for watching me struggle with Alice, good work.

31st July 2014

Three facts about my day. 1/ I have learnt that if a snake goes into space it needs a special helmet suit to go over its head. And a secondary back up suit over its cage, in case the first doesnt work. Apparently. 2/ Alice can say "helicopter" which will serve her well for any future aviation career that she may have planned. 3/ No one pissed or shit the bed last night. Myself and my husband included.

4th August 2014

And so today brings itself to an awesome conclusion with a code brown in the bath tub. Starting this week as we mean to go on with tantrums and turds.

6th August 2014

George informed me today that the orange scented soap that I told him was made of oranges was in fact disgusting. Apparently it smells of oranges, is coloured like an orange and the first bite was a bit orangey but after that it was "very yucky". Might need to spend a bit more time and thought answering my kids questions in future.

7th August 2014

Just told my husband that when things get too much just look on the bright side. At least, he has healthy, well adjusted children and a glamorous wife. Then I laughed so hard, I spilt Alices meds on my unwashed pajamas that I have had on since yesterday.

9th August 2014

I cant see Alices ribs!!!!!! Stupid to celebrate this I know but for the first time since she was a nasal fed 6 month old, I cant see her bones, she has a little tummy, her thighs no longer look like sticks and she just looks the tiniest bit plump. I am simply over the moon.

16th August 2014

So dinner party went well. One hour before everyone turns up, Alice falls on her face and reopens all the work the plastic surgeon. FFS. Another gaping chin wound, a lot of blood and a good dose of panic. Greg hosted the dinner party solo and I drove to the 2 hours round trip to A&E at the childrens hospital. Taped up again and gotta go back 7am tomorrow for yet another surgery. Awesome.

17th August 2014

So three hours at A & E on a Saturday night only to be sent home and told to come back at 7am for surgery. Back first thing Sunday and there for another 3 hours while just about every member of staff (nurses, doctors, senior doctors, plastic surgeons etc) all take it in turns to look at her chin, decide they dont know whats best and tell us someone else needs to take a look. In the end the pros and cons of more surgery Vs steri strips and tape came up equal and it was left for us to decide. Frankly we had no idea what to do for the best but based on it being Alice 5th anesthetic in her 3 short years and it not being any more likely to hold up, we opted to treat at home and left with a box of medical supplies. Already in 10 hours we are on our third change of steri strips and dressings so I'm not sure we may have made the right decision. Fingers crossed the dressings start to stay put and this damn wound heals once and for all.

18th August 2014

My nearly five year old son can fit his whole fist in his mouth. I'm in awe of my offspring.

21st August 2014

I swear I could not make this stuff up if I tried. George (freaking out): Mummy, Mummy! Quick there is a really bad smell in my room, Quickly Mummy pleeeeeease. Me: I cant smell anything. George (still freaking out) : Its under my desk, its horrible. Quickly Mummy. (So I crawl under his desk where he has been sat playing on his computer and take a nice big breath of air into my lungs), Me: Holy crap George, that's revolting. Have you been farting? George: Yes I have, quite a lot. But whats that awful smell? Me : Are you serious? Its your arse George!

George (light bulb comes on): Oh yeah, it probably is.

26th August 2014

Me: So George how was the Aboriginal Dance Theatre that came to your school? Was it good? George: They smelt of fish fingers.

Me: (Open mouth, no words came out) 27th August 2014

Two tiny things have happened in recent weeks that are so insignificant that, in a previous life they would have never got a mention, but in my current life they are just enormous. Firstly Alice can point. Not often but its starting to happen. Clearly the brain pathways are opening up for this as she can occasionally do it on request and if doing it more and more when she is not really trying. Alice has terrible fine motor skills and very little control over her hands, let alone fingers, so to be able to isolate a single finger is just freaking awesome and gives me so much hope. The second thing is Alice can now hug. Only other NKH families really know that our kids dont hug. They either go stiff or limp or wriggle away from you, if you are really lucky they kind of lie on you or rest their head on you but for some reason they dont hug you back and they certainly don't hold you when you lift them. So although Alice is only 3 and 13kg she is not like lifting a 13kg toddler, she is like holding a 13kg newborn, it takes two hands at all times and a lot of strength. Anyway she HUGS!!!! She bloody hugs me and I cant even put into words how it feels. Not for an entire cuddle but when you say "squeeze" she holds you tight and when she wants a hug she starts off by actually pulling you towards her. I am beyond, well I don't know what I'm beyond as I just don't have the words but the feeling of just the tiniest bit of pressure under her little hands on my back and arms is out of this world. I feel like I have waited my whole life for this.

4th September 2014

Will be mainly nursing a very sick Alice today. We rode The Crazy Train from 10pm to just before 4am last night, she has a shocking cold and as such has gone "glycine drunk". I know she'll come back to me but even after 3 years it still kills me to see her loose all her skills, frankly go barking mad and not be the girl I know. Movements are so bad she can only lie on the floor with her hands and feet wedged under her back and she is so uncoordinated she cant even chew or swallow safely. Back to tube feeds and she is on a no walking/crawling restriction for the foreseeable. No seizures but she is worryingly odd today : (

6th August 2014

OMG pant wettingly excited. I get to meet another NKH parent and child on Thursday. How the hell I will do that without soiling myself and vomiting at the same time is beyond me. I think by Friday I will look like I have swallowed a coat hanger.

8th September 2014

George threw up in the car a total of four times on the way to the hospital for Alices therapy and now she has both an ear and a lung infection. Awesome, just bloody awesome day.

11th September 2014

Met the amazing Justine Kana and her beautiful beautiful baby boy today. I hugged her so hard when I met her, then she tried to let go and I kept going!! She tried to free herself again after another hug and I still clung on. Finally on her third attempt she broke free. Thankfully she was not put off by a small clingy, over excited English woman. We only had half an hour between Kaleb being assessed by the physio and having an EEG so no photos and not much chance to talk, but I am driving back up there tomorrow on my own so we can hopefully grab lunch before she heads back home.

15th September 2014

George: Mummy do you really have eyes in the back of your head? Me: Yep, I told you George I see everything and I have eyes everywhere. George: Even in your bum? Me: Eerm, yep, I do. Even in my bum. George: Dont you get poo in them? Me: Tidy your room.

19th September 2014

Georges parting words as a four year old were that he cant wait for tomorrow as he will "look much older and be taller". Which is ironic as I always wake up looking older and wider than I did the day before, so maybe his wish will come true.

21st September 2014

Oh to live in a bubble of normality and trivial problems.

23rd September 2014

Hell of a day in The Underwood Household. Alice's bloods came back with the highest glycine levels of her life. Double what they were when we nearly lost her at 3 months old. She was also deficient in Vit D and very low in iron. To add to that her chest infection has made a return and we are back on antibiotics. If that wasn't good enough George has croup (confirmed after 3 weeks of a cough that just gets worse) however he can't be given the steriods he needs to shake it off as he also has an ear infection and steriods will make it worse! So its antibiotics for him too. Is it really too much to ask to have healthy kids?

Oh and Alice now has such raging terror of blood test that shes taken to hiding under her own dress in the hope that no one can see her. Funny and heartbreaking in equal measure.

29th September 2014

OMG I just inherited $750,000,000 from a distant relative who died in a "ghastly motor accident" with his wife and only child!! All I have to do is give all my personal details to some random bloke I have never heard of in Nigeria. Sounds perfectly legit to me. What on earth could go wrong?

30th September 2014

Hey kids, I have a great idea.....lets just get even sicker!!!! Yaaaaay. George now has a suspected perforated ear drum and Alice now on yet more antibiotics, stronger than the last two lots. Both are in the foulest of moods (so clearly not THAT sick) Funnily the only strength the two of them can muster up is to piss each other off intentionally and fight like cat and dog. Altogether now "" Everything is Awesome...."

1st October 2014

So my decision to let Alice take a more active part in her appearance each day, has so far proven that even if given the choice, its still always pajamas day and night.

10th October 2014

Fast heating up here and getting some great summer days so I thought Id crack out the strapless maxi dress as I'm not tanned or slim enough yet to show my legs. Just about to leave the house and Alice crawls up behind me and uses my dress to help her pull to standing, whipping it to the floor like a magician with a table cloth and effectively stripping me naked except for my undies in the blink of an eye. I am now searching my bedroom for a strapless bra for obvious reasons.

14th October 2014

Oh yeah, its all fun and games until someone shits in the paddling pool.

17th October 2014

Nothing quite compares to the joy of a completely finished plate of food from a child that this time last year was 100% tube fed.

19th October 2014

Alice can say "medicine" when I measure out her drugs. Don't know whether to be happy or sad.

23rd October 2014

Trips to the park do not get much better than this. First time on a swing other than her baby one in

the garden and my first walk with my girl out in a public place.

27th October 2014

A huge HUGE public thank you to Alices carer Vanessa for being so gracious after my horror of a son pushed you fully clothed into our swimming pool. Thank you for not leaving and never coming back, for not drowning my errant boy and for making light of the fact that your rather lovely watch was not waterproof. Dont worry though as we can reimburse you as I am currently negotiating a good deal for the sale of George to local gypsies. As always you are a life saver and I really really am sorry.

4th November 2014

George did something very cool today. He informs me he is in fact a Transformer. Of course I tell him this is great news and ask him his Transformer name. It is apparently "George". So I ask George the Transformer to show me his incredible abilities as a metamorphosing robot. He leaps up and lands on the floor, curled up like a hedgehog. Is he a car? No Is he a motor bike? No. Is he a dinosaur? No. " What are you" ?, I ask. He proudly announces that he is a RECTANGLE! I don't say it out loud but my mind screams "I love you, you f*cking awesomely weird child". Instead I simply tell him, he is very cool and that the world needs more crime fighting rectangles.

8th November 2014

Today it seems Alice will be mainly throwing a hissy fit, sleeping it off, throwing a hissy fit, sleeping it off (repeat to fade). In fact if I wake her up soon we probably have just enough time for another hissy fit before I can give her a sedative and she can go to bed for the night and sleep it off.

9th November 2014

Look who can hold her own drink bottle in the car. Little things make the biggest difference.

17th November 2014

Last weeks blood tests show glycine at 217 (down from 1200!!). For those who dont know, 217 is pretty much EXACTLY where we wanna be. Of course to balance out my joy she now has a stinking cold and an upset tummy. But I'll take the glycine result and run with it. George is still a rectangle.

28th November 2014

Its not often I admit defeat and frankly each day is usually a fair fight with me coming out on top, but today, Alice, you have broken me. Your tantrums and mood was no match for me and clearly the bigger personality won. Well played Alice Underwood, well played. Sleep well on your victory my devil child as tomorrow I will regroup and a new battle will begin.

5th December 2014

At a time of year where we are all getting excited about trivial stuff (me included) I just want to say out loud how hard so many of my NKH friends are struggling. We have several kids with back to back seizures right now and I mean hundreds in a day with no breaks. Medication can often not help seizures caused by NKH. Some are hospitalised some are being treated at home. We have others with the usual respiratory failings that come with NKH, who are on assisted breathing and again in hospital. Some have just had surgeries, some are dealing with the endless digestive issues that are another part of this shitty condition. Apart from that we have literally hundreds of parents who are about to face another Christmas without their kids who were taken by this shit of a condition. This really isn't ment to be a morbid post but more a declaration of respect. Alice has a "Mild" (oh the bloody irony in that term when talking NKH) form of the disease so we only deal with these problems when she is sick. However Alice and her other "mild" buddies still have a huge daily struggle and so do their parent,s but to watch your child seize hour after hour, day after day or fight to even breath is just the cruelest thing ever. I have been there. Not for long thank god but so many of my friends do this daily. To the people most of us don't know exist that do this tirelessly and never give up, you are my heros. NKH Mums and to all those in similar positions, I bloody love and admire you. May you have a peaceful Christmas.

8th December 2014

Now that's not something you see everyday. Just had a parrot fly full pelt into the glass door and knock itself out. Gonna be one of those surreal type days.

13th December 2014

Today I will mainly be admitting defeat 22nd December 2014

Not sure how many times I can explain to George that a Great White Shark is not the same as a Big White Shark. I swear he just thinks I'm being pedantic every time I correct him.

24th December 2014

33 degrees outside, air con on, replacement fridge finally turned up, poo sample obtained and delivered to local hospital (Alices not mine) shopping done, house looks like we've been burgled. Think thats everything. Happy Christmas Eve.

25th December 2014

Alice threw up after her morning meds and went back to bed screaming one hour after waking. George promptly fell backwards off his new swing set, which he now won't go near because he whacked his head on the grass . He then joined in with the screaming and skulked off to his room. Greg fell out his new hammock, which at least lightened the mood somewhat. I then got drunk and passed out sobbing with my head in my hands. Oh no wait that last bit hasn't happened yet. Awesome start to another fun packed Underwood Christmas. Merry Christmas all and I hope things go more smoothly than they are here xxxxx

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