Me, Christie & Ehlers Danlos.....continued

It's been an interesting couple of days to say the least. I have come to the conclusion that the services at the hospital leave a lot to be desired. The doctors (& nurses) are very overworked and staffing levels way to low.  The government really needs to step up and find a way to entice more doctors to come to Canberra.

I have found that there are very few paediatricians in Canberra (private and through the hospital). The waiting list to see a private paediatrician is up to 12 months.  Its not much better through the hospital system. Christie cannot see her usual paediatrician until October! She hasnt seen him since Feb. Ridiculous.  I have been advised to take her to Sydney to find a paediatrician, pain management clinic (the one here doesnt see children - this is the hospital). I have located a private pain management clinic but again the wait is until October and is very expensive.  So, as there is no paediatric uroligist in Canberra i take her to see one in Sydney. The opthamologist she has to wait until september. Genetics clinic in Canberra - October. As the genetics people are the ones who travel down from sydney i am just going to take her to Westmead as i have more faith in them than any doctor here in canberra!  Christie HATES the hospital and doesnt trust the nurses or doctors from her past experience. This is Australias capital City - the major public hospital, but there are practically NO services for children.

So yesterday we had an emergency appointment with an accute care paediatrician because i pretty much threw a hissy fit because they had cancelled her July appointment for no reason.  I made a written complaint to the department of Health. Amazing what can happen when you make yourself known to 'the powers that be'.  This particular Paediatrician (i am just going to refer to them as P cuz its too long to type it), so anyway this P told us that he didnt want to see her again as he couldnt really help her as he couldnt see her regularly. Great. The visit was pretty much a waste of everyones time.

I have been able to get Christie into the Psycology Clinic at the ANU. Its not ideal, but for now it will do.  The clinic is run by the ANU and the psychologists are students who are in their last year or 2 of their degrees or whatever.  They are supervised by fully qualified Psychologists.  The lady who supervises Christies team is a Doctor who worked in Perths Childrens Hospital with Children who have conditions/diseases etc and suffer chronic pain. So she knows what shes doing in regards to helping Christie deal with her issues, which is fantastic.  Today was our first appointment and both Christie and i are pretty happy to continue seeing them.  They even see me!  poor bugger lol his head will be spinning by time he is done. Todays visit was pretty much a 'get to know you, whats the issues etc' session which went for 1 1/2 hours.  Pretty exhausting.

Finally, i feel we are making steps in the right direction.  Now just have to finalise her Distance Ed, find a paediatrician and organise appointments at the Connective Tissue Displaysia Clinic at westmead for her to see the pain management team, physio, psychologist (its a multi-disiplinary team) and then our appointment with the Genetics Team there. Gosh i am exhausted thinking about it!

On our next trip to sydney in a couple of weeks i have decided that amoungst all of this pain and medical 'stuff' she is going through its time she had some FUN so we are thinking about going to Luna Park or at least something out of the ordinary for her.

Mother-Daughter Cycle

I always said i would never say the things my mum used to say to me, to my children. Have you ever said that to yourself?  Things like:  when i was a little girl... I was never allowed to wear makeup. When i was a little girl i ALWAYS had to eat all of my peas.  And then when i became a mum, sometimes i catch myself saying the same things to my kids and thinking omg i sound just like my mother.

When i was left home i always thought i would spend heaps of time with my mum. But then life gets in the way, kids, husbands, work, just stuff. Then the phone calls dwindle and the visits become irregular. Finding time for my mum is hard or maybe its not the finding of the time - its making the effort.  Of course i am there for her when she needs me, to take her places and be a shoulder for her.  But what i have come to realise just in the last week or 2 is that maybe she just needs to hear from me a bit more. To go visit just to say hi and for her to be more involved with my family.  After all she is the only mum i have.

I have come to this conclusion because i am now a mum with a daughter who has moved out. I miss her more than i ever thought i would. I don't want to crowd her or be a pushy interfering mother, but i just miss her face, miss her voice, miss the way she used to crash through the front door at 2am after a night out. I even miss the way she managed to get hair dye from one end of the bathroom to the other.

I wonder, does MY mum miss this kind of thing? I never ever ONCE wondered about this when i left home and here i am a grown woman of 43yrs and its just dawned on me that my mum could be feeling this way too. I don't want my daughter to treat me the way i have treated my mum.

Mum, i love you so much, and i am sorry that i haven't been in your life more.
Hayley you better be in my life baby because u mean the world to me.

Hayley my gorgeous daughter

My Mum

 



Tues:  So today i invited my mum and nephew Drew over for lunch. It was really lovely spending some time together. I made Declans recipe for Potato & Bacon Soup, some fresh bread rolls and a couple of games of Rummikub made for a great afternoon. Something we should do more often!  (& of course i kicked ass in Rummikub hehehe)

Me, Christie & Ehlers Danlos

Ehlers Danlos...so complex. Christie (11) has EDS Type 3 (hyper mobility)...we think.  We are still awaiting a definitive diagnosis. It's been an extremely long and painful journey so far & its not over, not by a long shot.  Christie also has had 3 positive ANA results which indicate a possible autoimmune disease - which is also being investigated. She is seeing all kinds of 'ists' ~ Urologist, rheumatologist, opthamologist, podiatrist, dentist, cardiologist, psychologist, geneticist and i have discovered that anyone ending with an ist is expensive!   She also sees a lovely osteopath..no ist..and therefore not expensive. She loves going to see K because he doesn't usually cause pain.

I have learnt to stand up for my child and follow my mothers' instincts. I no longer put my total faith in the medical profession. I don't take their word as gospel truth. They don't know my child like i do. So i WILL fight for her...don't mess with THIS mama Bear!

There are so many appointments, so much paperwork and quite a few tears mixed in - both mine & Christies.  She is struggling so much emotionally & physically.  The constant pain is so draining on her.  

In her world of pain and anguish I am trying to make happy memories for her.  Its rather difficult to be positive at times and i do struggle with this.  Don't be such a negative Nancy - be a positive..petunia??

We have 'met' a couple of lovely families online and actually met one of these families in real life - Suzi & young J.  Its an incredible feeling when i first stumbled across another mum who knew what we were going through. Made me feel i wasn't going insane and it also helped Christie to feel SHE wasn't going mad and that someone really believed she was hurting, not attention seeking or anything else. So many times people including doctors and nurses, have indicated to her that her pain must be imagined, or in her head, or that she must be depressed or having problems at school or home. For her to be able to talk to another child who is experiencing similar things was such a relief for her.

For a bit more of the medical side of EDS check out this link: but remember - it is different for every child. Ehlers Danlos

I also have some photos of her 'party tricks' which i tell her she cant do anymore because it isn't good for her body.  I took the photos so if she feels the need to show her tricks she can show the photo instead! but i will add these later.

Christies feet ~ a work in progress

Most nights C cant get to sleep bacause of the pain she is in, despite pain killers. Sometimes she is still awake at midnight. Looks like our kitten Jizzy had a late night too

EDS is a connective tissue disorder. We are not sure if its the EDS or the possible autoimmune disease that causes this kind of reaction when something lightly presses on her skin. Here i put my hand on her leg firmly for a couple of seconds and this is the result.  It happens everywhere, her face, arms, chest, legs, back. Once i remember a nurse freaked out because she thought C was having an allergic reaction to some medication.

Christies hands & feet 'sweat' so much at times that they literally drip. When she writes it runs down her fingers and pencils onto her work and it smudges. This makes her feel sad.

a bit of love goes a long way ~ her new friend J gave her this bear when we went to Childrens Hospital at Westmead

People I care about

Brian (my firstborn son) & his beautiful lady Charmaine

Grandparents with some of the grandkids

Grandma & G'Pa Kev

Hayley turns 18! first legal drink :)

The Maddox Family

Cousins

Christie and Bandaged Bear (from her new friend J)

Beginings of an Empty Nest

As i have just discovered, time goes way too fast and before i knew it my beautiful eldest daughter Hayley flew the coop!  Its only been a little over a week and its AWFUL.  She was hardly ever home anyway, working, dancing, hanging out with friends etc but at least i knew that HERE was where she hung her hat so to speak. I saw her every day. I had a 'toe' in her life. Now, i dont know what her plans are, i dont know if she is eating well, or at all, i have no idea what her home looks like now she has moved in. Now the 'EXPO' is over and she has time to breathe again i am sure we will catch up and i can go over and have 'coffee' with her. Her dad hasnt even SEEN her house lol...poor dad. Anyway, i think its hit me harder than i thought it would - i wasnt ready for it! I dread the day the last one moves out of home - then it will be an empty nest.