Needed some colour

I just updated my blog layout. Not sure I am 'in love' with this design (Grunge-Floral via BTemplates.com) but I think I am simply too fussy. Who'd have thought?

My sincere apologies to anyone who happened across my blog while I was in the process of changing things up. It took me many hours, and many trials, to settle on this particular template. So many are too monochromatic (like my last one (Girly-Diaries via BTemplates.com) or there are just elements I like and not the overall look. I'm not clever enough with graphics to design my own.

Still getting over this cold, but otherwise all is well. Will pop in with something to show soon!

Today is the first anniversary of my best friend, Karen. I text her to wish her a happy anniversary and found her to be in Manila, Philippines!! She's finally meeting her husbands family, which is so wonderful.

A sweet blessing

Terrible photos take on the spur of the moment with my mobile phone, who I know's camera is damaged (erm, does anyone else drop their phone 50 times a day? hmm..).

Miss Cadence, the newest member of our family, asleep in my arms.

Jessica enjoying a nice long cuddle with the little cutie, Cadence. 

My hay fever is officially a cold. I was out most of it most of yesterday. Had to call nan and ask her to drop Jessi at school as I felt like I could barely stand. Then last night a friend is txting me all worried because she'd just been diagnosed with Shingles and was worried maybe I'd get them too as she'd asked me to check them for her. I called HealthDirect and they told me it's unlikely but gave me symptoms to be aware of etc. HealthDirect is a brilliant government initiative! I have used it more than once. Basically it is a 24hr advice line staffed by registered nurses. For those times you're unsure if you need to go to the hospital, or like me last night needing to check the factuality of information my friend was reading on the internet, it's extremely useful. 

In the mail today Jessica and I received an invite from Ronald McDonald House to attend a Christmas party they're hosting in conjunction with ANZ bank called ANZ All 4 One Xmas ExtragagANZa. We'd be invited because we've been registered to stay at RMH before, although we never stayed as they mucked up our booking. I REALLY want to take Jess but it's barely 2 weeks after our trip to Perth for doctors and I can't even afford that trip. I might have to do some major sucking up to my mum!! She will miss more days of school, but at this point is that really an issue?

McHappy Day is just 2 days away Aussies, please get your BigMac and support RMHC. The work RMHC does is magnificent. Until you're in a position to need their services, you really have no idea. You can always donate online, too. 

Nov 13 also marks my nephew Hayden's 2nd birthday!! I am sad we can't be with him on the day, but we will see him soon enough :)

Obligatory snaps

 Jessica was in no mood for photos. This was taken 28 Oct 2010 before school. I made only her skirt and the 'scarf' in her hair. The t-shirt is something she already owned and the leggings... she really could have gone without the leggings! But, as she likes to climb I must be thankful she considers her modesty. The headscarf is waaaaay too big. I know this. Thank you for noticing it too.

Georgina and Jessica... wow these two are hard work. Georgina didn't want to get out of the car. Neither of them looked happy about being dressed up, yet both of them had been so excited in the lead up. Jessi LOVES that costume. The pettiskirt is horrendous and is fraying nylon crap all over the place, but that didn't stop her wearing it 3 days in a row. Maybe if I get a tealight I can singe the edges a little to stop (or even slow) the fraying.

 My friend Cissy and I at the Workers Club Halloween party, 30 Oct 2010 (it's a bit hard to have a party on a Sunday night lol). Cecilia is wearing a 1920's dress she ordered for the last Murder Mystery night which arrived 2 days after the event, a $30 feather boa, $55 shoes, had her nails not only manicured but acrylics applied, fake bullet wound tattoos, fake blood, and she left at home her big old fashioned cigarette holder (like this) with fake cigarette all bought for the occasion. I, on the other hand, frantically scrambled to make myself a costume, any costume, with supplies on hand.

I am sooooooooooo proud of myself!!!!

(did you hear that? it's probably the only time you ever will so please take note!)

I am not a "someone" or a "something", I am merely wearing a costume. I aimed for Regency, and I think I may have pulled it off. Sort of. This would have been more a day dress or something. If you don't know what the Regency era was, think of movies like Pride and Prejudice, Emma.. Anything Jane Austen!!

(It reminds me of an oversized nightgown/christening gown)

I had no more than 3 fabrics to choose from. I rarely buy more than 2.5m of any one fabric and I needed roughly 4m for this ensemble. It should have been in a small floral print and is instead in this funny little dotty cotton where the dots are ties of cotton. I really didn't want to use this fabric, I was saving it for something for me. Let's face it, I save too much "for good" and never get any use out of it what so ever.

I DID NOT USE A PATTERN! At all.. It was all from my own head and playing around with the manequin. Although I have a plus size manequin, that darn thing is nothing like me and it took a bit of work to get it from there to me. All piece by piece. I worked out the front bodice and then the back, realising I needed to have a slightly odd side panel too. 

I chose pastel pink for contrast only because I have a gorgeous pink shawl I bought at an op shop and rarely get to use. I already had the wide ribbon, the lace on the sleeves threaded with narrow pink ribbon, the pearls and flower in my hair. The pearl necklace is something I wore to a school ball. Possibly year 9 (so, age 14.. half my life ago lol). My friend bought me some narrow cream ribbon for the lacing loops and some flat lace for the hem as well as the pink lacing used in the corest style back all for under $10. Overall, I don't think this dress cost me more than $25. The fabric itself was no more than $6/m when I bought it. I know this because I am mega stingy!! (or mega broke, you decide). The bodice and sleeves are fully lined with some heavy, but soft, creamy fabric I got in a remnants bag and the weight of it helped to hold the sleeves up, giving them that "poof" they needed. The panel in the back (under the corset style lacing) is only fixed down one side and held with press studs (snaps) on the other. I was curing my hair and nanna was behind me sewing in snaps! It's a little hard to do those things for yourself lol.

The skirt is two fabric widths pleated to fit (yay for dotted fabric, no measuring required haha) and a press stud to hold the last pleat under the centre back bodice in place. It needed to open slightly to get it off and on. All hidden under the wide ribbon sash. I styled my own hair. It's not what I wanted but it sufficed. 

I was sitting there curling the front when nanna took this photo lol

I have no 'in progress' pics, I could go back and take some but I know no one is really that interested. I started with the mannequin and made it as 'me' shaped as it would allow and using super fine interfacing I marked a centre line, lined it up with the centre front of the mannequin and drew all over it with a Sharpie! I hand stitched in some gathers, pinned pleats etc and marked it all in black texta. I removed the interfacing from the mannequin and all the pins and tacking stitches, and traced it onto baking paper. Using an old bed valance I cut out my 'pattern pieces' with the baking paper pattern. Sewed up the hideous green valance pieces and tried it on. Too big. More tucking, pinning, tacking, drawing on.. until I got something that fit. Scribbled all over the green fabric in biro, sharpie and pencil marking different things. Undid all the stitches etc and the green fabric became my final pattern. Re-cut the pieces in my good fabric and lining. Then sewed it all up and put it back on the mannequin to work out sleeves. Had to cross my fingers the sleeves worked, and 'poofed' appropriately. The corest-y back was the very last thing I did, after the skirt was sewn on etc. I had no real idea how to make it work, and was worried I'd have to concede defeat and use a zipper. I also nearly forgot to sew an underskirt! I didn't have enough fabric to line the skirt so I cut some white jersey very randomly and serged some elastic to the top and serged up a seam. No one could see the underskirt so it was terribly rushed and imperfect but by this stage I wasn't fussed. Considering I was still at the serger/sewing machine 3hrs before leaving the house, and the last minute finishing touches nanna was adding, I was grateful just to be done!

I had a good night out. Well, I appreciated the getting out!! Above is myself, Ange (Georgina's mum and my ex-coworker) and the barmaid Danielle leaning over the bar to get in on the action :)

This was the night before all the headaches started. I have one again today and I am wondering if it is related to the hay fever I have right now.

I have Jessica home with a nasty cough too. She missed a day of school last week also. It was the athletics carnival on a 36C degree day! I told her teacher she wouldn't be attending. It was way too hot to make them run around in the sun, she can't wear appropriate footwear due to her latex allergy, and she is under strict orders from her dermatologist not to get sunburnt because of the pills she is on. I felt a little bad about it, like I should be encouraging participation.. but let's face it. Not all kids are athletes anyway.

The weather is still bouncing between about 18C and 36C but we've been forecast 40C this week too. Not looking forward to the summer heat if we're already getting such high temps.

Head. Hurts.

Oh my gosh, throw me back in the 'Bad Blogger Corner'. I have hardly even thought of blogging the last few weeks and only today did I catch up on reading them. Some people blog crazy, insane amounts (this compared to my own inability to set any kind of routine!!) and reading page 1 wasn't enough for their blogs. I've had some insane headaches of late and I am not enjoying them one bit!

Halloween was fine. Jessi happily trotted off to school in her costume and I spent a week at my sewing machine making myself something to wear for a night at the pub (bar) with friends. Neither of us wore anything at all spooky, ghosty, ghouly, creepy or gross. Just a costume. As far as I am concerned Halloween is a good excuse to dress up but it doesn't need to contain fake blood, wounds, horns, bats or pointy hats. Sure, lots of people wear those kinds of costumes, good luck to them. Infact, it seemed 4 of 5 girls at the school this year were wearing a witches costume. How unique! Don't you just LOVE to blend in? Admittedly, Jess was a little worried about "being different" and I can assure you I promoted different as much as I could. When the time came, I understood her nerves and was reluctant to walk out the door in my own costume. I think I would have felt like that regardless of the occasion! I'm not big on being 'different' myself.. Talk about hypocrite!!!!

Right now Blogger wont open the photo loading window so it will be all text, yay for you!

We welcomed a new little lady into our family last week. My first cousin Stacey had her fourth child, her second daughter, Cadence Kristeen Diana and she is so sweet!! Stace and I spend time merely speculating her hair and eye colour. Stacey's older 3 are all blonde hair, blue eyed little cuties but Cadence has dark hair and eyes. This is no surprise, she reminds us of her elder sibling Alexander who also had dark hair when he was a newborn. Miss Cadence sleeps an awful lot. The first day I went to visit I think I spent a good 6hrs there and didn't once see her with open eyes! Her older brothers are 4yrs and 3yrs and she's good about all the raucous they make and her big sister is almost 12 and oh-so-grown-up! Watching her stand over the bassinet the other day was a really hitting moment of "wow, she's so big now! when did that happen?". My mum and I took Stacey's boys, her nephew and Jessi to the park on Saturday and it was a lovely day out. Alexander decided he was coming to sleep at my house the night. He had a rude shock when I said NO!! He's my little buddy, and it's so cute. Love them all to bits.

Jessi doesn't need me any more. I miss being needed. She's only 7 and in the morning before school I run her the shower and wash her hair if needed but she dresses herself, packs her lunchbox, organises her school bag etc all by herself. And it makes me sad! I really never expected to only have 1 child. I feel like my life is on pause.

I've come to realise friendships can be so fake. This sounds harsh, but beside my cousin Stacey I have 1 other 'friend' left here. The other people I associate with aren't real friends. People I know, people I've grown up with.. sure, there is a lot of history and a lot of sentiment, but when I truly look at the relationship it just isn't there. That was a REALLY hard thing to realise, and now try come to terms with. I don't dislike them, nor do I feel they're bad people or anything else so harsh, I just don't see there being that real friend bond with us. Not seeing them the whole time I was home from my last trip to Perth only to go out with them to the Halloween party on Oct 30... who does that? They're also in very different worlds. I don't have an iPod, a Pandora bracelet, a new car, the money to spend $55 on a pair of shoes just for Halloween (yes, you did read that right) nor to get massages or my nails done. I have so little to actually talk to them about.

I had a massive melt down last week. This is the first pay since giving up my job that I have felt the loss. I was so broke this fortnight. I borrowed a bit of money off nanna and it's great she's there to lend it, but it means I start the new fortnight on the back foot. I cried (truly sobbed, it was disgusting) and at one point I even thought Jessica might be better off with her dad (financially) and then I launched into hysteria at being such a selfish person for even considering it! There is no way in this world he is getting her, money or no money. He is apparently in Western Australia this week and we've not heard a peep out of him.

I spent a few hours with my step dad. He was upset after a phone call with my mum who works away on a mine site. It seems they're over. They've been married 17yrs this December but mum's decided she's had enough and is ready to move on. Really ready. She's already talking about moving.

It's hard bonding with my step dad sometimes (who you will see referred to merely as "dad" in most of my posts). He hurt my mum really badly when I was 16 or so, and he's got alcohol problems, he's never accepted my life as a mother and when drunk reminds me I should have been a doctor or a lawyer (never dreams of mine, but ok). He called me for a lift (he lost his license yonks ago, another abuse/alcohol related story) one night last week which was really out of character as he always calls my nanna. I got the impression he wanted company so sat with him for a couple of hours and we just talked. About all kinds of stuff. He had no idea what went on between Jessica's father and I which I was completely dumbfounded to learn! He asked me if I was seeing anyone and couldn't understand the answer being 'no'. I told him the night he hurt my mum I saw her all smooshed and bloody. I don't think he ever knew that either. My friends used to be scared to sleep over because of him (those same friends I said above that I am not sure where we really stand). He's had all sorts of charges laid against him in the years he's been with my mum. He's really not a role model of any distinction. But when I left that night, I was just getting into the car and he was standing on the front step when he said to me "So, if it's over.. between Patti and I... we can still talk?". After all he's put me through, all the bad memories, my heart still broke.

I missed something like 6 calls to the mobile and 4 to the home phone this afternoon. All from my sister. I had been on the phone with the treasurer of the local newspaper (of which I am editor) and as soon as I saw that all the calls were from her I called her back expecting some sort of bad news. Turns out she was calling to tell me of a job she saw advertised. Which she thought I should apply for. I am so fed up! I know she meant well and that she really does want me to live closer to her (with Perth and her being 8hrs away) but I do see her every 3mths when I take Jessi down for her doctors appointments. Anyways, I told her that just applying for a job was a ridiculous idea. I can't just up and move! It's not as easy as all that. I have a house, a mortgage, a child who needs her mother more than many and I am freaking single. There is no one there to pick up the pieces I let slip. If people keep asking me about jobs/study I think I am about to start yelling. Which wouldn't be at all polite or socially acceptable.

I've felt so overwhelmed the last couple of weeks. If everything in my life is left up to me, then I wont have much of a life. How will I ever get to travel, buy my acreage, build the house I want etc etc when I can barely hold down a 4hr a day, 5 day a week job? How am I even supposed to enrol in a course when for the last 9 days I haven't been able to keep food on the table, or get by without my nan propping me up? (be assured Jessica is well looked after. Nanna wont let her go without). I want to run away. I am desperate for a real holiday. Someone even said to me today "but you go to Perth all the time!". That is NOT a choice! I have to go again in 2weeks for Jessi's next set of appointments and I can't afford to go. Period. But I have to make it work. I want to really get away. I'd love to head to the USA, but even Bali would suffice! You can travel to Bali for under $600 from Perth. Almost costs that much for a return trip from here to Perth! Actually, fly from Kalgoorlie and it could easily cost that much for a return flight. Crazy huh!? You can fly to Indonesia cheaper than within your own state. Weird world we live in.

I need to find some mojo and do something. Anything!!! I am going crazy.

PS. My psych thinks he's worked out my problem(s). LOL! I don't fully understand but it's something to do with the 'meaning I associate to things' and thus the way I handle them (or don't). I am a little fed up with his flow charts, he pretty much redraws the same thing on each session. Only see him once every 2 weeks, and longer when I needed to be re-referred, so I sometimes feel it's all a bit spread out. He says one week he will bring X info to the next session, and on the next he doesn't even mention it.


Jess and I have this little habit of "I love you more/I love you the most". It usually starts with "I love you" and the reply "I love you too" and soon evolves into "I love you more" - "But you can't, cos I love you the most!" - "But I still love you even more" - "How can you love me more when the most is the MOST?" and it's funny, and we laugh. We know the outcome and yet we still play our silly little game. Or I'll randomly say to her "guess what?" and she of course asks what to get the reply "I love you". It always puts a smile on her face. I am sure she knows "what" but she plays along. I love my princess.

Finding trust a misguided thing

I have barely slept at all. I tossed and turned most of the night. That it was quite warm wasn't helping things, but more importantly, because of the news that my daughters teachers aid was implicated in a story you'd never hope to hear.

At this point in time it's pure here say, but in a town of under 1000 people gossip is usually right to some degree.

While Jessica is not directly affected I still feel so bewildered. I have little choice but to trust those in charge of her care while she is at school, and that's a really really hard thing to do. To add news stories of this calibre to it just blows my mind.

I also wasn't notified by the school that Jessica didn't have an aid yesterday. Something they've been good about in the past and I have bought her home on days where I just felt too unsettled by the idea. Probably an over reaction, agreed, but her aid is her primary carer in the classroom/playground. Not the teacher. Her teacher doesn't even know the child she sits next to threatened to punch her in the face yesterday. I will be going to the office this morning to voice my concerns on both topics.

I'm also a little annoyed that of all the people gossiping about it, who know the close contact this woman has with my daughter, no one told me. It was only when I approached a friend and gave her the pieces I was slowly building the jigsaw with that she told me.

Jessica relies on other people to keep her safe. She's too little to do it all herself right now. How do I trust those people? Do I just blindly give it to them and hope for the best? Let's just say, that's what I had been doing to date and it hasn't always worked out.

Nonsense

I've been spending a bit of time in the garden, but it's getting really hot already. I am getting really tired. I am so unfit that a few swings of the pick has my head spinning and I spend more time trying to regain my equilibrium. Some of my tubestock natives shrivelled up  :(  They over water them in the nursery's! Or they keep them in she shade when they're a full sun kinda plant (and over water them). So anyways, a couple have already succumbed to the not-quite-summer heat. Not looking forward to summer! I thought I was all clever using some plastic gutter-guard around my little plants, until I had to buy a new roll. Oh, lookee there! It says on the packet you can use it for that purpose. Talk about pricking a balloon and rejoicing in its deflation.

I actually had to turn my air-conditioner on this afternoon because Jessica wasn't coping with the heat. I guess it was more the humidity. She finally has her trampoline mat repaired and back on the tramp, and her cubby house complete. Wow. Christmas 2009 gift is finally usable. So sad. No pics cos the backyard is 4ft high with dead weeds.

I saw a local lady yesterday who will have some canaries I can buy off her for Jessica for Christmas this year. Yay! Only $10 each, the pet shop in Esperance wanted $25. There is another local lady I will see about buying so budgerigars off.

I am really, really annoyed that drug companies removed pseudoephedrine from hay fever medication. Well, it was probably some stupid law which said they had to do it. All they're basically doing is punishing people who get hay fever! Yes, it can be used in illicit drug making (hence its removal) but the way I figure it, they're going to keep making/selling illicit drugs one way or the other. You're just making people who could really benefit from it miss out. Jessica's been suffering badly this spring. Definitely her worst to date.

It's barely 9pm and I am struggling to keep my eyes open.

I'll leave you with a pic of my girl trying to turn herself inside out.

Gotta Love It

'Gotta love it' - the sarcastic name of the photo album on my Facebook page containing all the photos of Jessica's allergies, hospital stays etc. Well, not quite all, MRSA got two albums all of its own! There is one other too, 'The Not So Pretty'. I was only prompted to share those kinds of photos with my Facebook friends when a dear friend from Anaphalaxis Talk was having MRSA trouble with her own child.

Is it wrong to tell you how fed up I am with our lot in life? Of course. You're supposed to be all smiley and when someone asks how you are the polite answer is "well thanks, and you?". If you told them you feel like you have the weight of the world on your shoulders and the kid is sick and you just want to go to bed and never get out they'd probably have you committed!

I feel like that a lot. Completely overwhelmed and unimpressed with everything. Sometimes I have to remind myself that something that just happened was good, be happy, be grateful. I had a long phone call with my sister yesterday which put me in a real funk and I couldn't even concentrate on a DVD last night. She's getting married in 2011 and was asking me if I could replicate some invites she'd seen. Well, I haven't seen them so who knows? (I'm actually thinking the "gift card holder" my Cricut can make, pictured with a tulip printed paper a few posts ago would be nice, but in her colour scheme of course.), she actually asked me to do the bridesmaids and flower girls hair (you guessed it, I am not a bridesmaid!). Hair. Me? No. Spend close-knit-lovey-dovey time with her friends? Hell no! She went on to say they're going to try borrow some $18,000 to pay for this whole affair. Really? That's more than my annual income. Yet they're only going to have 40 or so guests? What the hell do they need $18,000 for??? Ok, so when she found a dress in a Salvation Army store she just loved her fiancé told her she had to spend $2,500 minimum on her dress or "not to bother". Say WHAT? These two live well beyond their means at the best of times. I think I've heard all I want to about this wedding, and right at this moment I am glad it's not until the end of 2011 because I feel so.. ? I'm not sure. Hurt. Jealous. Angry (try explaining 'proof book' to my sister, you will understand the frustration.).

Then this afternoon my baby comes home sick (from nanna's house). Again. She's all teary and miserable because she has conjunctivitis (pink eye to my American friends) as well as hay fever. It got me to thinking about all the things she's had to deal with in her short life. She isn't yet 8, after all. I also began to acknowledge how little I document of her ordeals. I have photos gallore, but I really need to talk more about it all, and the struggles that go along with. I am not the only mum out there with a 'sickly' child. I am fed-the-hell-up of having people think I am over reactive and that "at least she doesn't have Downs [Syndrome]". Right.. like the trials I have with Jessica mean nothing because you can't physically see all the suffering she endures? She is set to miss another 3 days of school with this conjunctivitis, likely bought on by her hay fever. Too much crap in her eyes over too long. I tell the nurse on arrival at the Emergency that she has latex allergy. When she went to inspect the eye she went to put on gloves and I had to ask "are they latex free?". Nope.

I have nearly lost my daughter to death, twice. By that age of 7! Don't be telling me I have nothing to be so fussy about. One was to MRSA, the 2nd to an anaphylaxis allergic reaction to chocolate. Thank goodness for the Epipen and a paediatrician who believed there really was something wrong.

During pregnancy I had placenta previa and had all kinds of warnings like not to chop firewood, hang laundry, lift anything heavy. I also had 22.5weeks of all day every day sickness (who named it morning sickness?!). When my waters broke they were almost fluro green. After she was born and they stitched me up they had to take me back in and drain my bladder to control the bleeding.

My mum left the hospital the morning after she was born because of Jessi's dad's abusive and controlling behaviour. My mum wouldn't even look at me, or say goodbye to Jess. We left the hospital on day 2, even though I could barely stand up I was so dizzy all the time all because he wanted to. The doctor put the worst fear in me that she might get jaundice if we left so soon. I walked around for 2 days seeing my baby as bright yellow!

My daughter is fully immunised.

About 2 weeks old she got conjunctivitis.

7 weeks, my 21st birthday

At roughly 3mths old the eczema began. It was on her cheeks and was so nasty. I, no word of a lie, had a complete stranger ask me outside the supermarket if I poured boiling water on her? I have so few photos of her as a baby. Subconsciously I couldn't see past the eczema and it resulted in not so many photos. People kept telling me eczema was stress related. Didn't I feel grand!

Roughly 6mths

 

7 or eight months

A 'well meaning' child health nurse suggested we relax on solids to help her eczema. She started having a lot of rice cereal and I had problems feeding her from then on.

She stopped breast feeding around 6mths old, by choice. I guess the stress really did get to her then. Also saw a dermatologist who visited the country in regards to eczema. Walked into his office and he asked what he could do for us. We said "we believe our daughter has eczema.." and his response almost floored me. "what do you want me to do about it?" he asked. Wow. He spent so much time trying to take photos of her cheeks for his website that all he did was write a prescription for steroid cream. Same as our family dr.

Roughly 6mths

About 26mths of age they finally diagnosed asthma. Treated asthma and the vomiting eased.

At some point along the way she had an admission to Kalgoorlie hospital for "investigation". They did a barium swallow and an ultra sound to see that all was ok and working properly in the swallowing and vomiting processes. They ushered us out of there pretty quick because they were busy with flu season.

She'd often vomit massive amounts, until her stomach was empty and she'd still be retching. Sometimes it was like power-chuck! I'd call nanna crying because I needed a shower, Jess needed a bath. There'd be spew everywhere. I saw our family doctor so many times. They said she had reflux and prescribed medication to suit. I never, ever gave it to her. I didn't think that was the cause at all. I also kept telling the dr about this vomiting and she'd just listen and say it was normal for babies to spew. I'd babysat since I was 12, I knew babies. This wasn't normal. About 10mths down the track she weighed her and realised she'd be losing ground in her growth charts, actually going backward! We were rushed off to PMH. Jessica was diagnosed as having 'Failure to thrive'. BEST mother moment. EVER. Not. She was started on supplementary milk drinks and polyjoule. They listened to the vomiting issues and gave her the very first lot of RAST tests for allergies. She was positive to egg and potato, tree nuts among environmentals. I queried sesame which they had no result for. Was told to remove egg and potato from her diet to see how her eczema went.

About 26mths of age the finally diagnosed asthma. Treated asthma and the vomiting eased. She had chronic constipation until about 4yrs old and took daily laxatives. It was painful to watch and no one seemed to care. Just take the laxatives.

I don't recall how many admissions she had to PMH in those first few years. It was at least 4. No one ever said anything much about her skin, they queried asthma a couple of times. They were focused on trying to get her to eat. They did start us on wet wraps for eczema. That was grueling and she hated it. I had to walk the halls with her in a stroller the whole time she was in one.

Early age 5 they diagnosed latex allergy via skin prick testing after she had a massive lip swelling reaction to a balloon at age 4. I had to push our family doctor before he finally referred us to an Allergist who reconfirmed tree nut allergy and confirmed sesame for the first time. Latex, tree nut and sesame are all anaphylaxis/life threatening allergies. We already knew about egg and potato, and environmental things like grass, animals, dust. She petted a friend's dog once and her entire face swelled like a balloon. Her eyes swelling completely closed. Treated allergies and the vomiting made a whole lot more sense! .

Age 5 was the MRSA. I had to buy her a stroller because her skin was so bad she could barely walk. I kept telling or family dr something wasn't right, this isn't her normal eczema. He didn't believe me.

Then she got burnt with her antibacterial bath oil. It was so horrible!!!!!!!

Finally got MRSA diagnosed, 2 weeks in Perth at PMH. Back for an 8 week check up and readmitted. Started huge doses of oral antibiotics, which lasted some years. Every time we stopped she break out in infection again. MRSA saw us make contact with our dermatologist, who we now see regularly. This dermatologist started her on immunosuppression therapy, using the drug Cyclosporin, to help control her eczema. Immunosuppression is used for people who are having transplants so their body is less likely to reject the new organ. Has some wicked side effects like kidney failure. Spent weeks super stressed and badly worried every time she had a cough or snotty nose. All I could think was pneumonia.

Cyclosporin didn't work too well so they switched to Azathiprine (Imuran) and she's doing much better. It has other side effects, like the warts on her hands and face, the ring worm. The fact she missed a month of grade 1 when whooping cough was going around and she was too susceptible with a weakened immune system to be near people who had it/contact with it. Her immunisation had to cease as live cultures are used and injecting something live into her with a weakened immune was more likely to give her the disease than prevent it. She isn't allowed to get sunburnt because the drugs can cause her to be more likely to develop melanoma.

She's been under general anesthetic twice. First for an endoscopy and the second for dental surgery. Our school dentist wouldn't touch her in case he had latex in his van (they visit in a kitted out caravan, school is too small for on site dentist). He diagnosed her and she was sent away for crowns, fillings and removals. All on baby teeth. She was six.

I can't count the number of hospitalisations she's had for asthma and eczema. We see our dermatologists in Perth every 8 weeks. It's some 16hr return trip. She's currently taking 4 tablets, 2 inhalers, 1 nasal spray, various creams daily, and you can often add antihistamine to that list. She has bleach baths twice a week and a bloody test once a month. Her clothes can only be washed in 1 brand of laundry powder. She still can't interact with most animals. Her linen needs washing a lot. All our linen has blood stains. She is still extremely uncomfortable in some kinds of clothing. She is still prone to infection. She is limited by shoes, clothes, toys and various other things due to latex allergy. She can't even wear a bandaid. She has a lot of broken sleep. She often gets a fat lip just from eating white bread. Cross contamination of sesame seed. She's seen doctors, pediatricians, ENTs, dietitians, dermatologists, allergists, immunologists, pediatric dentists, psychologists. She still hardly eats. She's spent far too much time resembling a mummy (of the bandaged variety). She puts bandages on all her dolls. Her hospital files at PMH and our local hospital is over 2inches thick. She sits on a 'sitting mat' at school to keep her off the carpet/grass. She has a teachers aid. She is still missing massive amounts of school, and starting to really notice how 'different' she is.
She cries "I don't want to do this anymore".
"The only thing I am good at is itching".
"I wish I didn't have allergies".
"How come other people don't have eczema?". (remembering we live in a really small town)
"It's all my fault. Everything is my fault".

I want a little girl who could live pain free. Who can pet a dog and eat whatever she wants. Who can grow into a young lady without fear of condoms, shampoo, make up. I want my daughter to be 'normal', and it's selfish of me. She is who she is and I can't change it. Oh how I know I can't change it. I'd have a thousand times over if I could. Besides all the regular childhood illness like colds n flus, chicken pox. I don't think it's fair any child should need so many needles poked into them. I've had to hold Jessi down for blood tests. Once, with 2 nurses and myself holding her down the doctor was still unable to draw any blood. She was only 3!

You tell me if you think it's fair for ANY child to suffer. You tell me if you still think my concern for my daughter is all in my head? You still don't know the half of it. Go on, tell me "it will all get better" just one. more. time. I dare you.

You tell me if this looks like anything you've seen a child endure (but of course you haven't, because they're at home or in hospital when this bad, so you think eczema, asthma and allergies are a piece of cake!)....

       

 

              

 

I lost all the photos I had saved on a thumbdrive, there were hundreds more like these, including those of her struggling to breath with oxygen masks on.

Yes, I realise my tone throughout this past was angry. It makes me angry that my little girl has to endure all this. That I can't help her. That people are so heartless about it.