She’s eating grapes and floating on a cloud of pethidine.

Thanking you, my friends for nursing my worry and thinking of my girl.

Brought to you by Childlife

* This month’s theme is to talk about a person who has helped us in some special way. There are many people who have helped us. I am very critical of the medical profession, I know that. I have many trust issues with doctors. I’ve chosen to thank Ivy’s paediatrician because, even though we have a love hate relationship, he has stuck by Ivy and our family for the last two years. Even though diagnosis has been difficult and things have not been easy, he has never said ‘I give up’. I guess, that is the most important thing, that there is someone who will walk with us.*

Thank you.

We came to you for help (you were our third attempt at finding a paediatrician)

and you did.

You never gave up. (I bet you wanted to, though. I bet you were sorry we ever walked through your door, some days).

You helped us to find answers.

You listen to my stress and sadness.

You put up with my frustrations.

You always did what was asked of you and sometimes more.

Even though I get angry and expect too much, and my expectations are too high,

you really do have our best interests at heart

and I will be forever grateful

for  you -

to have someone else walking this journey with us

who knows her almost as well as we do

and for your kindness.

I know you really do care about her.

I watch how gentle you are with her.

I’ve seen you work and worry at a problem until you find the answer.

If I have to trust any doctor, I’m glad it’s you.

From the bottom of my jaded, neurotic heart,

Thank you.

*Now, back to my regular whinging*

People.

They are amazing, intimate, intricate beings.

When I started this blog, I felt very alone in the world. I thought of the blog as my online diary to get my thoughts out into the open, instead of keeping them tucked up inside.

I think I was about six months in when I discovered this blog, (which I still love) that had a ‘community’ and I wanted that, so I followed links to places I had never heard of and joined up.

Soon I met some Aussie bloggers and my circle started to widen.

Today I recieved a parcel… from my friend XBox. I can’t remember how I stumbled across his blog but it is one of my favourites and I have been reading for almost a year. Inside this parcel was a heartfelt card, so simple but so meaningful and it made me feel so wonderfully good to know that I had a friend.

There have been others too,

Kim sent me some beautiful ceramic pieces to make mobiles with the kids. I had a post ready to go up but the mobiles did not get done in the school holidays because Ivy was unwell.  They are gorgeous, handmade butterflies, hearts, doves and stars. Her note, and how she saw each piece representing one of my children was so touching and I cried when I received it because I felt as though I had someone walking along with me as I travelled.

We can’t forget my gorgeous Lou and the Tootsie Rolls. A day that will go down in history for our family and be remembered always.

Kate and Suze have offered to pimp my blog.

Veronica checks up on us to see how things are going, makes sure we are fairing ok and there are others too, some have been where I am, some just want to let me know they are with me in spirit, new friends and old… all of you.

Amazing.

 Ivy is so very unwell again. She has not recovered well from the last bout of sickness, both she and Noah now  have  croup and we think Thursday’s visit with the paed (yes, Jayne in his lunch hour) will bring with it a hospital admission. He thinks she will not be able to kick this infection without IV antibiotics. He said to pack a bag and we all know what that means.

The croup is just a little viral kick in the teeth, an upping of the evil Prednisone, when all we want to do is reduce it. Noah is certainly enjoying his superkid powers whilst on it.

And of course, we have blisters.

When I went to Uni to study Psychology,(fresh out of school) one of the first things I learnt about was tangentiality. Something I am very good at it seems…

Anyway, back to the point of my post.

Thank you.

Each and every one of you.

You help me through all the terrible days, you make me laugh and cry, you help me to feel human.

My community is not big but to me it means the world.

Not just any dentist but the best dentist in the world.

She was lovely. thorough and has brought us one giant step closer to havivg a type of Ectodermal Dysplasia for Ivy and Imogen.

I’m not really sure what having a ‘type’ will mean, aside from the fact that I have been able to access all kinds of journal publications about Rapp - Hodgkins and have a better understanding of the ED process. I am very thankful that they have a mild case and I am also thankful that their teeth can be looked after by our new paediatric dentist.

The practice also has three dental nurses, all were lovely and they were not phased by twin toddler tornadoes.

At all.

At one stage Noah mosied over to a nurse who was looking at xrays of a jaw. He looked at her and then pulled himself onto her lap.  She hugged him close and then explained the picture that was before them. It was totally sweet and so unlike anything I have experienced in professional rooms before.

*************************************************************************

Today I am going to read William’s notes again.

It will be the last time.

I have been trying to access them for over six months.

Am I nervous?

Yes.

I want to take everything in, commit it to my memory for one last time.

I don’t want to forget the little things.

There is already so much of his birth that I can’t remember.

A whole significant portion of his birth that I have lost,

that I can’t piece together, no matter how hard I try.

For whatever reason, my brain cannot process it and so I have to read the notes to help.

I promised the obstetrician this would be the last time.

I am hoping for the sudden onset of a photographic memory…

Ivy was well (touch wood touch wood touch wood).

Her chest was clear.

Her stomach not too tender.

Her ear looked much better. Still not fabulous but he said he could see a clear spot.

Her bottom was clear of any blisters, clear of any trace of the pemphigus, just a small amount of scarring.

She didn’t have to have bloods this week.

Her blood pressure was ok.

Her heart rate was ok, no sign of a murmur. Still a little high.

She actually smiled at him and gave him a hug when it was time to go.

She wasn’t scared for the first time in weeks.

So now what?

Now it’s time to start reducing the Prednisone again, now it’s time to  push the Micophenolate up.

Micophenolate is the immune suppressant that she trialled in hospital. It has lots of neat side effects too.

Now it’s time to reduce the antibiotics.

Now it’s time to upset the apple cart, take chances, take risks, find a balance, play with fire.

And we have a plan (of course we do).

For when she gets sick

and for a new doctor, an endocrinologist

and for another visit to the immunologist.

Am I nervous?

You bet I am, after the Dapsone, I am down right scared.

For now, though, I am going to bask in her wellness and try not to think about the  what if’s or the next time.

Today, I am just going to enjoy her.

I love my kids!

They rock and they totally made  my day, made everything okay, if just for a small moment in time. The belly laugh was SO needed.

I can call you that, can’t I? After the outpouring of care and love that I have just had the honour to read, I think I can definitely call you all friend.

Firstly; Thank you.

After a few days cooped up in the hospital cage…er… I mean, room, I am a little rusty with my words but I can say thanks.

Secondly and obviously we are home.

Ivy actually had gate leave on Monday so I could take Imogen to the orthodontist and made it through the day without oxygen, so we have been discharged.

Her methaemoglobin levels are down to 6.3, which is fantastic news for the little girl.

Dapsone is the enemy and will never enter the house again. I officially hate Dapsone.

In fact, I think I always hated it.

The paed has been banned from saying anything that infers that side effects won’t happen, that they are rare.

He has definitely been banned from saying  ‘unbelievable’ and ‘one in a million’ when describing these rare side effects that seem to love my daughter.

In fact, all doctors are banned from telling me how they have never met anyone like Ivy in their careers and they are also banned from talking about journal articles and that she is an interesting case.

Ivy does rare, ok?

She just does.

And she is not a case.

She’s a little girl.

Anyway, we’re home.

Onwards and upwards, my friends, onwards and upwards.

…you can’t find your car keys but your toddler son knows exactly where they are.

…you get to the car and realise that your husband has taken out one of the car seats.

…you get to the pathology unit and the phlebotomist knows you by your first name.

… as you leave some old guy looks at you with daggers and comments “Awww, the poor little girl, why’d ya have to do that to her?”

But then you know everything is going to be okay when you walk from the hospital with  little hands clasping yours and an elderly lady comments…

“You’ve got the whole world in those hands of yours”.

For those of you who were shocked by the paed’s lack of follow up post sepsis for Ivy -  The receptionist called yesterday and offered us an appointment for the girl next Friday.

I have to say, I was surprised.

Personally, I was not going to push things, too tired, too worn out fighting for now and was going to muddle through this week first but he organised it all and I am thankful for that.

We are on day three of the Dapsone and I have noticed the following;

She has no appetite but she is extremely thristy.

She is pale.

She is tired.

Her first bloods are on Tuesday.

I got a comment today from someone saying that I needed to vary what I write about.

To that person, thanks for your comment but this is my blog and I’ll write about what I like.

If you don’t want to read, please don’t. There are lots and lots of blogs out there. I’m sure that you will find something that interests you. My blog is for me and for my children. That is why it was started and that is why I still write.

Ivy finally stable and waiting admission to the ward.

It was so scary on Wednesday morning.

I couldn’t wake her up.

Two febrile convulsions and I knew she was really sick.

We had been chugging along at half health for a couple of weeks and then things went curly.

Bacteraemia. In old terms: blood sepsis.

She did not wake for 24 hours. Doctor’s came and poked her with needles and looked her over and she didn’t open her eyes. When they dripped her, she grizzled a bit but only while the canula was piercing the skin. After that, she was gone again.

She was so puffy, her skin tight with infection.

It was all so fast.

The doctors and nurses in the Emergency room were brilliant.

Efficient, kind and caring for my girl. Even the paed came to the ER, with his purple power shirt and matching power tie. Concerned, was he. Worried.

Is it wrong to love IV antibiotics?

Within 24 hours we saw a difference. Another 24 and she was sitting up.

Everyone was so lovely. The dream hospital admission. The nurses so, so wonderful.

Especially lovely was one nurse who caught me crying, questioning and double guessing my abilities. She soothed my frazzled, raw nerves with empathy and understanding.

Her name was Pippa.

Thank you Pippa, I won’t forget.

My Mum brought me food and shampoo and calmed the big kids after school. David’s Mum looked after the baby boy. He came home with five new songs.

I’ll have to ring her for the words, so I can sing them for him.

Three good friends - Mary, Tracey and Trish. Thank you. I wish I could bottle your love. I would make millions.

Thank you to everyone of you out there too, who sent their wishes. It meant the world.

She’s home and happy.