dimanche 25 septembre 2011

And its only the beginning!

About a week and a half ago Zoe started coughing a little. It was no surprise because Mia had been coughing for around 15 days prior and we figured Zoe would pick it up also. Mia didn't need any medication or anything and she got over it very quickly.

I wasn't worried about Zoe either because although she was coughing a little she didn't have a runny nose and didn't complain (Keep in mind she can no longer have any type of fever, due to her treatment). However she had been in a lot of physical pain and wasn't eating very much over the last 10 days. She was complaining of stomach aches, sore eyes etc.. (Pain and a reduced apatite is also part of her illness.  She has also lost 300g in 10 days).

Last Tuesday was treatment day and we rock up to the hospital with everything fresh in our minds to talk to the Doctor about. They started their physical exam and they were listening to her chest and the eyebrows go down in a concerned V... An x-ray was ordered immediately and off we went rolling Zoe through the corridors in the 'BIG GIRL' wheelchair.

This time she was a little scared of the x-ray machine so I put on the led jacket and stood by her and held her hand. The first thing we noticed was the size of her heart... it was huge! nothing was said about the size of her heart though so we are guessing that was normal. The lungs however were not so normal.

The whole bottom half of her left lung was white with white blotches over the top half and the right one. Of course we had no idea that it should have been any different (since X-rays are black and white) but we were soon to find out that she had a bad Lung infection (this came as a shock because she didn't look sick at all and her cough wasn't really that bad).

We waited for the physiotherapist to come down to see her and she is the type of person who should be banned from talking with Parents. She blurted out "The bottom half of her Lung is not functioning"! she then looked at my face and said "but it's ok, don't worry we just need to fix it"! umm ok says me.

Her stomach aches are from the Advil. This happens frequently with Anti-inflammatory drugs. It can cause Ulcers of the stomach etc.

Anyway home we trot with a prescription in hand for antibiotics (Lungs) another medicine for her stomach and another prescription for Physio (Clapping). We started the antibiotics that night and the little brat spat it out three times!! I was beside myself. For any parent who has had the unfortunate experience of staying a few days in hospital with their sick child AND everyone else's you would surely agree it is a nightmare! not only can you not sleep because the lights are so bloody bright but you also have the poor kids who aren't lucky enough to have their Mum/Dad spend the night with them crying all night. So here I was thinking 'damn it kid, stop spitting your medicine cause if we have to spend the next few days in hospital I will be one cranky Mummy'!

Well we finally tricked her with a yoghurt and I breathed a sigh of relief. The next day was the clapping... What can I say about that? The most barbaric form of physio I have ever been witness to... And it didn't make a lick of difference she didn't spit anything up. She kept swallowing what ever she did cough up, but the physio was meant to do a gentile form of clapping to squeeze the gunk out of the bottom of her lungs but she was up on top of the table pushing with all her might. Zoe was bright red and I thought her eyeballs were going to fly out of her head! NOT EXAGGERATING!  

I have to call the hospital tomorrow and find out what the next step is. We may have to do another x-ray to see if she is getting better or change antibiotics. I just hope we don't have to subject her to more clapping. She has to go through so much already I can't stand to see her suffer through that as well.

The doctor told us this is just the beginning because the flu season is upon us and Winter is coming fast. First 3 weeks of school and she is out with a lung infection.. I have a feeling this is going to be a LONG winter. Once we get her infection under control she has to have a flu shot which can also be dangerous for her but at least she is being seen regularly by her Dr. We just have to be more vigilant! No more letting people kiss her. So back off people! Keep your Jimmy Germs away from my baby girl ;)

vendredi 9 septembre 2011

Hard to say goodbye

Zoe started pre-school this week. Her first day was amazing, she was so brave and didn't cry, so I thought "ok, this is going to be a piece of cake". Although first weeks are always hard when ever you take your child to school whether it be number 1 child or number 10 child I can honestly say that today 3rd day of school was the worst I have EVER experienced with all 3 of my kids!

Maybe it is just because I am at a very low point at the moment because nothing dramatic actually happened! I walked Zoe into class, she had hold of my hand and she walked me over to a table where the puzzles were laid out... I helped her sit in the chair and then she said "sit down Mummy"! I squatted down next to her and said "ok, Mummy has to go now". Her lip went down and she looked up at me and said "No mummy, sit down". She tried not to cry but it was too much for her and she started sobbing!

Again, as I said nothing out of the ordinary from any other kids first week! But imagine a little girl who is 2 and a half years of age, who lays still for a Doctor who pushes on her stomach, checks her heart, throat, ears and then moves all of her limbs in all different positions (knowing they hurt), who sticks needles and IV tubes in her continuously. Imagine that same little girl who sings to herself while she is getting a full body X-ray, or her head stuck in a machine to check her eyes and through all of that... not one tear will fall from her eye! Yet to be separated from me for such a 'NORMAL' event in her life can evoke such emotion that she does not show during her medical ordeals was heart wrenching!

I can not protect her from her physical pain but I should be able to protect her from her emotional pain and today I couldn't even do that because I know that she needs to be with children her own age and it will make her stronger later in life! I just feel like I am failing her in every way! I wish her life could be easier, pain free, free of needles, free of medication, free of illness, free of being poked  and prodded !

I wonder if other (JIA) Mother and Father's feel like I do today? Maybe next week will be better!

jeudi 8 septembre 2011

Life is not always easy!

So much has happened in the last few weeks. Good things and not so good things.
Zoe seems to be doing well on her treatment and we were told we wouldn't be needing to give her Chemotherapy shots. We were also told we can start reducing her Pain meds on 'Good' days.

This was a relief for all of us and a lot of stress lifted off my shoulders! I started thinking maybe things are starting to look brighter and that now all we needed was the job transfer that we have been waiting for.... New Caledonia or the Caribbean, Sun, surf, and best of all out of here and if we were lucky enough to get New Cal, we would have been closer to my home and my family!

Disneyland was upon us and I was so excited for the kids because they had no idea! I packed the car the night before and woke the kids up early the next day! We were all in the car and Paul and Mia were trying to guess where we were headed... it was all very mysterious for them and they had no clue where we were going not even when we pulled up at the hotel.

About an hour into our two and a half hour drive Willy got a phone call from a friend of his at Willy's previous News Paper that he worked for (which is in a town half an hour from here). This phone call was to plunge me into sadness, worry, anxiousness and a desperation that I didn't know existed. So I tried to put on a smile for the kids and enjoy our weekend at Disney but it was really not easy!







My dream of warmth, sunshine, ocean and home disappeared with that phone call. I feel like I am stuck in a prison with no windows and no fresh air. That may seem melodramatic to some, because where we live is actually quite beautiful but I am far away from anything familiar to who I am (not that a place can define who you are but I do believe you are a product of your surroundings)  and I am so far away from my people (family and friends) that the loneliness seeps way down into my bones! I don't think anyone can really understand the depth of what I am feeling until you have lived what we have lived this last year and adding to the fact that I have wanted to leave this place (that I can not call home for many reasons) for over 7 years now...

I feel like I have given too much and I now have nothing left to give. My emotions are raw and logic continuously does battle with those emotions, so I am perpetually tired. I feel like I have been grieving for the loss of my 'healthy' baby girl and my family in Australia and everything I miss out on day in day out by being here. However I do need to see the bigger picture and right now that is financial security for our family. I have to find a way to get through this with a smile on my face and I suppose all those years of Theatre/Drama at school will now eventually pay off.

Summer or what was suppose to be summer is now over and the kids are back in school. Paul is now in CM1 (4th grade) and Mia in CE1 (2nd grade) and Zoe is starting her first year of pre-school (mornings only). It is good to get some time for myself, even if I do nothing in particular.

On a positive note I think we will be heading home to Australia for Christmas after all :°)

jeudi 1 septembre 2011

Just a quicky!

Tomorrow we will be taking the kids to Disneyland Paris! They have no idea that this is happening tomorrow! We have mentioned Disney a few times over the last month but they don't seem to bite.
Lets just hope the rain holds off another couple of days.

We got back from our holidays 4 days ago. It was a 7 hour drive from our home and it played havoc for Zoe! Sitting in one position for long periods is not a fantastic idea and I cringe to think what our flight home to Australia will be like next year.... 23 hours on a plane, air-conditioning etc...
I think she will be a mess for at least a week after our arrival :( on a positive note her spots have gone, so the anti-allergy meds they gave her before her last IV worked! Happy!

Mia has been sleep walking again and screaming in her sleep... Most kids will scream and stay in bed until someone comes!!! NOT Mia. She screams and then hides somewhere so you can't find the little so and so. Then when we are searching the house for her, she puts herself to bed and doesn't remember a damn thing.... Try getting back to sleep after that happens!

Zoe has been a right little turdle! She has become so moody since we left for our holiday (which is why I put it down to the travel to and from).
She had her first day back at Hydro yesterday and did quite well, considering.

The kids went shopping with Willy to get all their school stuff and today was the clothes shopping! I think I will stop feeding them because they grow too much and it is bloody expensive to cloth them in 4 seasons! Back home in Qld we only have 2 seasons, Summer and Spring! It is much cheaper like that and lets face it, Summer wear is Swimmers and thongs (for your feet) not much to it.

When I figure out how to add photo's to this blog I will add some. Stay tuned for a Disney update!