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.

Overload

I will have to get in the habit of blogging more regularly, then I wont feel so overwhelmed when I do decide to blog. Maybe I should set photos to upload before I go to work so when I come home all I have to do is write!

My little teaser the other day is the most adorable cross over baby jacket. I think the back is too big, the pattern piece was missing so I traced the front, but I get the impression it should have been narrower. The jacket pattern actually used bias right the way around the neck and sleeves, but I don't like bias much. Plus I had a completely un-used roll of the most perfect coloured ribbon! Scored it in a bulk eBay lot of lace. So, avoiding bias, I made my jacket reversible. I sewed the two wrong side together leaving an opening in the back to turn it out. Sorry my pics are crap, it was late! (**see note)   The jacket pattern is Simplicity 9647 size Newborn Babies dated 1980. Will upload a pic next time I am using the camera. Thank you to my friend Toni of ChickChat for gifting me the pattern (and many more! PS. go check out her scrapbookin!).

(**note) As there was no picture people reluctantly bid and as the seller said it was a plastic grocery bag full I figured "who cares?!". Turned out to some some seriously vintage, as well as fun, laces and ribbons. Many of which there were metres and metres of, and I think I paid $6 something for the auction and maybe $6 postage.

My Amazon.com order arrived Friday last week. I bought 2 "self help" books and Carefree Clothes for Girls. Now, I was going to shop "local" on the so called "Australian Amazon" at fishpond.com.au but for Carefree Clothes for Girls alone they wanted $49.99AUD!! Ouch! Now, the photograph of the invoice to the left is in USD but I can confirm at the time of purchase my total invoice was $63.23AUD! The books totalled $40.36 Aussie dollars and the remainding twenty-two or so was postage. Hmm.. Where would you have shopped as a single mum on a shoe-string budget?

I've been meaning to sew Jessica some winter pyjama (pajama, pj's) out of flannelette. I was horrified when trying to find some online that it was all $24 per metre!! Ok, so Anna Maria Horner and co, your fabrics are gorgeous.. but well an truly out of my budget. Oh how I'd love some Amy Butler, Heather Bailey, Cath Kidston, etc  :(  I love to browse online but it gets a lil depressing after a while. So anyways, can't afford online flannel and live no where near a shop. So looks like I will be either buying jammies for the kiddo or they will have to wait for our next trip to Perth where I can go in store at Spotlight and buy some boring old unprinted flannel for $3.99/m. I might even splurge on a knit to make them more comfy (lacking warmth though).

How you know your kiddo is unwell...

It's 4pm and she is sound asleep in the back yard and not climbing or hanging from that yellow and red contraption she loves so dearly (it's a dome shaped climbing frame).

Unfortunatly when we disturbed her we found she'd had an allergic reaction to who knows what! These reactions are becoming more and more frequent and she's starting to get really frustrated and upset with her lot in life. Just yesterday she was eating BBQ Shapes and both top and bottom lip were ever so slightly swollen. Enough so she'd scratched it terribly and made her lip bleed. After she had some antihistamines and it had all settled back down her lips were all peeling and cracked. Not pretty :( She was really annoyed too as she LOVES Shapes! I tend not to discuss Jessica's allergies here too much as it's such a big part of our real world that neither of us enjoy. I do sometimes wonder if I should be doing more advocacy. While she is anaphylactic (could suffer anaphylaxis) to tree nuts, sesame and latex, her allergies are much more involved. She reacts to a lot more, and her skin prick tests even say she should avoid peanuts, orange, banana and others. We have a great team of Allergists at Princess Margaret Hospital for Children who believe removing foods from her diet which don't cause her any major dramas is more dangerous to her ongoing health. Her diet actually HAS to include banana and peanuts at least twice a week. Jessica also reacts to dust, almost every animal, scented things (like scented tissues and toilet paper). Sometimes it feels like "you name it, she'll react to it". But we also don't put her in a bubble. As a child's most susceptible years are from the ages of 10-25 when they are more independent, ascerting their rights as individuals, prone to peer pressure etc I teach Jessica now that yes your lip is itchy and horrible, but go take some antihistamines and you'll feel better. Or in the case of it reacting in the form of her eczema we apply the creams or run a cool bath. It's important to me that I teach her how to care for her own needs as best I can. I can't and wont always be there for her (as much as that pains me). We have our epipens, and she takes a "medicine" bag with her wherever she goes. I must admit, it's far easier to avoid food and read labels than it is dealing with the latex allergy.

As the sunshine fades

Summer is gone and the cool air is already moving in, which is surprising as it was such a HOT summer! Not only is summer gone, so is almost 1/4 of the year. I just don't know how time gets away from me so bad! I always mean to pop in here and update my blog, and then I get bored with the idea (or as is more the truth, too distracted by other people's blogs!) and when I finally go to do a post it's HUGE! I really need to blod more regularly. Yet, since I say that every time I do blog, don't get your hopes up :) I'm quite annoyed right this minute, I was doing the rounds of my fave blogs and it seems Flickr is down which means many of the images on blogs are little red x's. Boo!! On this note, I uploaded all my pics to Photobucket this time, since I didn't like the idea of another 6 hours for one blog post. I'll load them in as thumbs, you *should* be able to click them to see bigger images, if you so desire :)

My friend Marrissa of Through the Garden Gate and I have decided to try our luck at this years Mother's Day markets. Every year our small town holds a markets in the park and it gets smaller and smaller every year. We both enjoy creating (I'd say crafting, but we certainly don't limit ourself to crafts!) and it's not only our way of giving back, but to see if local people really are as interested in what we do as they say they are. We live in a tiny town, some 800 people, and the majority of them work for the local gold mine, so lets just use the S word and be get the nastys out the way. Snobs. They drive 2hrs ONE WAY to buy their groceries, they don't support local business. You know the kind, right? Nothing is ever good enough. We have a town full of them. So we'll try it out, see what happens. If we sell nothing then I guess all our friends know what they'll be receiving for bdays this year *haha*. It will cost us probably $5-10AUD to hold the stall so it's not like we'll be losing out. If we keep our target small and aim for the kids given $10 and told to "go buy something for mum" we might make back our fee. *lol* So as you see, we're in it more for the fun than to make mega bucks. It's always so nice to sit and socialise and markets are a great place for it.

It seems I had a blog giveaway win way back in January, and I had no idea!! Probably cos I wasn't checking blogs much then as I was away in Perth a lot (and my prepaid broadband is so expensive and that's what I use when not at home). It would have been some buttons. I've just sent an apology email to the wonderful host Jane of Pretty Jane. And here I was feeling like I've never won anything, ever. Well, now I can say I have, I just don't have it to show *lol* (I'm not claiming the prize after such a long time, just so you now. the email was merely for good manners.)

My gorgeous nephew is getting big. As much as I hate all the trips to Perth which Jess requires since being on Cyclosporin for her eczema, it allows us to see little Hayden all the more. Jessi dotes on him! She still wants a baby sister :)

My baby girl has turned 6! Amazing.. we didn't do anything for her bday as we had a very stressful drive home from Perth with her asthma. We only arrived home at noon the day of her bday, my mum was at work (she works away on a 2week on 1 week off roster) so she went to our toy shop with nanna while I raced home and wrapped some presents.

I've promised her a belated party cos Feb is just hectic in this little town, so many bdays! I have ideas piling up thick and fast.. Should be interesting. Jessi's eczema has never been sooooo brilliant! She was put on immunosuppressants (which still scare the hell out of me) but they're working! Jess is finally wearing socks! I can't believe it! It's been almost 2yrs since she agreed to wear them last. Such small things but so significant in our home.

I made some bits and pieces for Jessica for her birthday and she seems to have passed them. First off is my first ever patchwork and quilting. I've never done anything like it before, and I'm not sure I ever will. I didn't follow any patterns or directions. I made my quilt top, my quilt back, then made a sandwich of the two with wadding between, quilted it, then did the binding. Of all that it was the binding which made me wanna forget the whole thing! I flowed with the fabrics and I wasn't sure you could patch mitred corners but since I had no one to tell me I couldn't or that it wouldn't work, I just did it.

My fabric of choice

The Results


And a little dolls outfit made from a thrifted ladies shirt as seen some posts ago. The doll is one we bought at a stay in Princess Margaret Hospital when the doll we took with us went missing. She is Jessi's fave doll of choice right now and always seem to be naked! I used an old (I am reluctant to use the term vintage) pattern for these, I can dig out the details later if anyone's interested. I free formed the shoes with craft felt.

As mentioned, Feb is a big month of birthdays here so of course, we were invited to more than 1! The twin girls got these bags with hair accessories, while the other bdays got purchased gifts.


March saw the running of the local horse races which is one of the few social events in town. I had known for a long while I wanted to make myself an Infinity Dress, of which there is a really great tutorial on Craftster by Rostichery. Now, I looked at a LOT of similar dresses online to see what I wanted. I didn't "follow" the tute as such, just remembered the basics. I had bought fabric from my last trip to Perth to try this dress and it was quite hard to work with as it kept stretching all over the place. I borrowed an overlocker (serger) but the power cord seems to have been lost, which meant I sewed this on my regular machine. Nothing about the dress is "neat" or even "finished" (only the hem). I made a circle in a square skirt to get pixie hems and cut the circle too big *duh*. I also made Jess a dress from yet another old pattern. This one is without dates on the pack but I'm leaning toward 70's from the style. It's a "one size only pattern" and one of the few I had in a 4. I let Jessica choose the fabric, I wasn't even sure I had a zipper, but it all came off well. I don't have any good photos of my dress and will have to get some at a later date. As I cut the circle too big it was a bit too short in some places and I kept tugging at it all day! It was fun to wear, very comfy, and we both got some very lovely comments about our attire. I just found a pic of Jessica's pattern online at Wikia


Last minute I also made us each something for our hair. Mine is crazily crap, but hers was very sweet!


Since Jessi is anaphylactic to latex (as well tree nuts and sesame) I made some beanbags for her classroom to use in place of balls where possible. Her teacher was delighted. I think there was around 20 in all in 2 different sizes. So easy to make! I didn't hand stitch them closed as I was making so many and they're no worse off for it.


I've made myself a pincushion, trialling an idea/pattern. I am sure I have this in a magazine but my recent reminder was from Whosie at Whosie's Written Whatnots which she has titled Doily Pincushion. I would love to have had some small vintage doilies to play with! I'm still pleased with my pincushion. It helps that I am IN LOVE with this particular fabric! These are in mind for our afore-mentioned Mother's Day Stall. Not sure..

Also in mind for the stall, some pocket tissue covers. These are all the wrong size, too big, too small. Still trying to get it just right.


Sew Hip is a really cool magazine which I am so pleased to be able to buy here in Aus. So far we've had 3 issues and I am in love! I am sick of buying mags a few issues then they stop selling them. Bring me back I Can Make It Myself (which I didn't realise was Aussie until just now, so will be hitting up the newsagents to reorder this one!!!!) and Better Homes and Gardens Quilts and More. Anyway, getting back to Sew Hip, I have issue 3 and decided I liked what was coming in issue 4 so much I made it already, without the mag. As you can see, it's not perfect but I didn't put too much thought into it anyhow! I figured I can wait to read the pattern in isse 4 *lol*. I do need to move the button embellishments as they're far too low.


I've had some interesting thrift finds lately. Would you ever believe what size this dress is?

If you open the pic with the tags you will just see it's a size 8!! That's tiny! Compared to me anyhow, I am a 22! Yet the pic of me, in the dress, is me in the dress. Completely un played with. Hard to believe, huh? I decided to refashion it into a comfortable fit as that elastic waistband is sooooo tight, and add some length to it. I almost had it, almost wore it out. Then realised there were some ginormous errors and haven't yet got back to it. I need to rework that dress! But alas, winter is coming so the urge to perfect dresses is dwindling.

Another interesting thrift find is this fabric panel. I have no idea what I am going to do with it, but I can assure you it wont be making a box o_0 what an odd reason to make a panel. It has some really cute prints which I am sure can find a much cuter home!

Some unusual printed fabrics, again I don't know what I am going to do with them, I just find it impossible to leave fabric at the thrift shop!! I got plenty more, these are just more interesting. And I am sure you get sick of my posts being weighed down with images of fabrics that are all so old! I wish I had the $$ to go buy some Maria Horner and other bright, fun, modern fabrics. Maybe if I get the job I have an interview for on Monday I can. What's the bet I have to order them from the US?


A cute apron I thought would be good to draft a pattern from. I was disgusted to see it was made in China, I thought it was a handmade piece. Oh well. I wonder what they used the Velcro strip for?

And a pic of Jessica with her 11yr old aunt, whom she hasn't seen since she was 6mths old. To me they look very similar yet people keep telling me how much she looks like me. I think she is her dads family all over. Not that it matters, she's my princess no matter how she looks :)


I am sorry for the ultra messy layout. I am tired, this still took ages, and Jess has been begging for the computer for hours. Enjoy :)