Wednesday, 30 May 2012

Hyperphosphatemia

Today Ayda had her 4 monthly appointment with her specialist... We started with the good news!  The fraying in her bones has healed, meaning all the dark spots that showed up in her xrays last time are gone!  We couldn't be happier :)  We were also told her alkaline phosphatase levels (ALP) were lower, which Dr L was pleased about...
But...
There is always a but...

There was calcium in her urine... Its the first time this test has come back positive and it means that her kidneys are not keeping up with the increasing amounts of calcium being pumped into her body because there is not enough phosphate to absorb it... To try and counteract this he has up'ed her phosphate dose and wants monthly urine tests to keep a close eye on her...

He was also concerned about how badly her legs are starting to bow... It seems that the more she puts pressure on them the more they are going to bow if we cannot get her doseages right... He is giving it 6 more months of medication experimentation before we look to other options, possibly surgery...

It appears that the bowed legs are restricting Ayda's height development but not her weight so there is now an imbalance between her height/weight ratio... He suggested being extremely careful with her diet as he wants her weight rate to slow down... This was one of the hardest pills to swallow as we do watch what we eat and have always presented her with a healthy balanced diet and to think that we have to be even more careful makes me anxious that as she gets older we will make her paranoid about her weight which is so dangerous with girls in particular... My friend is giving us the number of her daughters pediatric dietician so that gives me confidence that we can tackle this in the right way without causing Ayda to feel restricted or become obsessed with her diet...

Ayda feel asleep in the car on the way home and after a couple of phone calls to family filling them in on the appointment, I had a rare moment of silence and alone time to reflect on the afternoon... It made me cry (although I always cry after an appointment due to the overwhelming reality it gives me that this is infact our life)... I felt for the first time since Ayda's diagnosis, deflated... I realised that no matter what I do, no matter how hard I try, it will never be good enough.... I will never be able to 'fix' this, or make it go away and it was a depressing thought...

I look at my beautiful, smart, funny daughter and I forget that she is different... I forget that she is not quite the same as other 2 year olds... But when I am in that waiting room, I am reminded that for the rest of her life, she will be fighting a battle that she will never win...


But... and there is always a but!  We are blessed... because she is beautiful and smart and funny and cheeky and so much more... And she may always be a little bit different but she will be amazing while she is and that fills my heart with hope and so much love I could burst... So while I will let myself be sad and defeated tonight, I will wake up tomorrow brave, ready to keep doing all I can to make things the best that I can...



Friday, 25 May 2012

Somethings gotta give

It is crazy town in our house at the moment... My husbands work is slow and I have been picking up extra days at school to supplement the income... In doing so I have also decided to mark national exam papers for the next 2 1/2 weeks at night and on weekends... This means on the days I also teach during the day and go straight to marking, I am away from the house for 15 hours... It means that I see my daughter for 1 hour a day, and this is breaking my heart...

I never forget how fortunate we have been that I have been able to avoid working full time since having Ayda... But I have now seen the story from the other side and my heart goes out to all those mums that are forced back into work before they are ready.... It's tough... I feel tired and grumpy and overwhelmed with all the jobs that need doing... I feel disconnected from Ayda... She is going to my husband for things that she used to only come to me for... Its been such a lovely experience for my husband... He is so enjoying getting to know his daughter on a new level and bond with her the way I have been able to ... And Ayda is just thrilled to have so much Daddy time... So for that I am glad that we have been able to swap roles for a time... But I am counting down the days when things will settle and return to what was...

In saying all of that I realised yesterday that sometimes we cant do it all, that somethings have to give... So give they did!  I ignored the 4 baskets of washing, the sink load of dishes and the gritty floors and instead laid on the bed reading stories with Ayda.... We played doctors and had a tea party and finished off the morning with a trip to the park... I reconnected and made sure she knew that Mummy was still here, still present and still completely in love with her... I let her have her day sleep on our bed so I could curl up next to her and stroke her hair as she drifted off... I would leave for marking before she woke up so I wanted to breathe in every second of her...

The jobs will always be there, but time with my toddler is numbered and I don't want to wake up one day to a 16 year old and regret that I didn't soak up those early years... Today is about baking biscuits, building block towers and painting!  More fun than laundry thats for sure!

Saturday, 19 May 2012

When it all goes wrong

When my younger brother was 6 years old, and just started school he was bullied... It effected him so much he developed a nervous stutter and slowly lost confidence and his outgoing nature... Because he felt so powerless at school he in turn began to bully our youngest brother... Who really knows why, we can only speculate that it helped him to feel powerful and in control of someone because he couldn't feel this way about himself... It took 3 years for the bullying to stop and for my brother to slowly regain his sense of self, to loose the stutter... But the damage was done, and had already set off a chain of events that would come back to haunt the family 12 years later...

9 months ago my youngest brother confessed to my mum that he was suffering from depression... We had noticed his loss of appetite, lack of sleep and withdrawal from the family but isn't that common for most 16 year old boys?  He started seeing a therapist, he started taking Prozac and slowly the story has unfolded... The bullying he endured from his big brother all those years ago has had a much deeper effect on him than we could have known... He has started to talk about is lack of trust in our parents, how he feels betrayed by them that they were so busy trying to put the bullied brother back together they ignored their baby's cry for help... Of course that is not entirely true but that is how he remembers it, that is his reality and so his memories must be validated...

On Thursday morning I received a phone call from my mum to tell me that the night before my littlest brother had had a major meltdown... After a horrible fight, unforgivable words exchanged and finally a violent episode, he took off out of the house... The brother who had once been his tormentor followed him and tried to talk him round... We wont know what was said between those brothers but one came home in tears, distraught that his little brothers depression rests on his shoulders and one came home and swallowed a sleeping tablet to block out the horrible night....

I cried when I got off the phone... I watched my beautiful, bubbly, happy 2 year old pull stickers out of her sticker book and stick them to our family cat and wondered when it all goes wrong... I find it so hard to fathom how our innocent happy babies can turn into angry, hurt withdrawn teenagers... My parents are wonderful parents and have not let him down on purpose... They didn't know any better, they were trying to do the best they knew how... But I guess sometimes our best is not good enough...

What an enormous job parenting is... Maybe one child really is enough?


Tuesday, 8 May 2012

Babies and the beach

It has been a crazy week.... Not a lot of down time or chilling at home, but it's been nice catching up with friends and celebrating life...

Last week we had the pleasure of meeting our friends newborn... Ayda took to mothering like a duck to water, holding the bottle carefully, touching her little hands and feet and stroking her head gently as she drifted off to sleep...




As I watched her put her finger to her lips 'shhhh-ing' everyone around her as not to wake baby Olivia, I started to get that familiar ache in my chest.... My throat started to tighten....I felt the beginnings of tears in my eyes.... She really would have made a wonderful big sister... And oh how that saddens me to think that neither she will get the chance to dote on her own little brother or sister, or that they will ever get to know the extent of her love as a bigger sibling....



I know a few friends who are all due to have babies towards the end of the year.... Some are having their first and some are not... I feel so excited for them... The thought of holding that precious new life in your arms, breathing in that new born smell, stroking that soft skin.... But I also feel immensely jealous... I wish it was me... I wish it was my body getting sick in the mornings and heartburn in the evenings.... I wish it was us planning out nursery's and debating over names... But its not, so I have two choices that I can see... Either shut myself off and become bitter and resentful... Or I can use this as an opportunity to get my new born fix... Support my friends through those hard first weeks.... And hold their precious little babies close, whispering love into their little ears... The latter seems so much more inviting...




We finished the long weekend off at the beach...It was the perfect Australian Autumn day.... Clear blue skies, warm sun with a fresh breeze... We loaded the eskies, sand toys and swimmers and set up camp under the mangroves.... I watch Ayda be 'mothered' by our friends eldest girl, play with our other friends sons, fighting over buckets and spades and I realised that we are blessed... Ayda will not get the chance to have biological siblings, this is true... But man does she have some amazing 'family' around her... She will never miss out of that feeling of being protected by 'an older brother' at a sleazy bar, or have someone to play hairdressers with and shop for formal dresses... She will always be surrounded by our friends beautiful children and really isn't that just as good?  What a lucky girl she is...


Wednesday, 2 May 2012

The up side

Hospital day means blood tests and xrays and weight checks and height charts... It means being prodded by doctors and nurses and disputing medication doses with pharmacists.... Its traumatic for both of us!  But the reward is once we are done with the appointments, we get to walk through the parkland's and look out over the river to our gorgeous city skyline...



While walking along the river pointing out boats and water birds, Ayda discovered a bug... She is fascinated with them at the moment and shows no fear... She just picks them up and lets them crawl all over her...






I love that she is curious and fearless... Yes its just a bug, but lots of kids and well lets face it adults are scared of little bugs... The squeal and wave them off... But not my girl... She is brave... I know that she will be able to take on the world and even if she falls and bruises... She will get back up and keep going... Because she is strong... Stronger than I sometimes give her credit for I'm learning to let go of my own insecurities and let her show me what she can do... I know I will be amazed.