Sorry, I was "Missing in Action"

Hi all, that is if there is anyone out there that even bothers to check my blog anymore seen as I haven't! LOL.


So.. where have I been?


Well, Jeremiah started having a few wierd things start happening, the main one being that often only one side of his mouth would move when he talked or smiled. It seemed to get worse and an MRI was done to rule out a brain tumour (he was also vomiting upon wakening).

We found out that he has a rare brain condition "Chiari Malformation"- where the base of his brain is basically herniating down his spine, which blocks the flow of fluid around the brain so it can function correctly.

Some people have this without symptoms, most who have symptoms start noticing it around the age of 30yrs, and fewer again are as young as Jeremiah.



From Oct to recently Jeremiah has been quite bad but he seems to be much more back to himself at the moment. They said you can have good times and bad times with it, so we are thankful for the rest he is getting.



The things that affect Jeremiah -

-Difficulty breathing at night where he will stop breathing and his body will eventually jerk and he would start breathing again (therefore he sleeps with us again).

-Painful legs and body, headaches which again are mainly at night or if he has been quite active.

-One sided body weekness, so only one arm swings when he runs and he can get very uncoordinated, lots of stumbles.

-Trouble swallowing, again worse at end of the day.

-Sometimes he will pause in whatever he is doing and wack at his eye or ear for a while, then stop and move on (we have been told people get blurring vision and hearing loss coming and going for short bursts but he is only 2 so he can't explain if that's what it is).

-He was completely toilet trained (1's and 2's) and even at his day sleep but he now has no control, he does try but doesn't seem to be able to read his body anymore. Again this is a symptom of some people but Jeremiah is so young we won't know if he has just gone backwards as yet.



He was getting so bad with it all that we were really worried, he just stopped playing and being active, he was in pain every night and had difficulty swallowing at tea, but thank God, he has really come good at the moment and is even back to jumping with both feet and running again! I didn't really notice how much he wasn't himself until now that he's almost in full swing again. Best thing is no breathing problems at the moment either ( very hard to get any sleep with a child that you are continually massaging for pain and stops breathing on and off!)



There is no cure for his condition so they will keep giving him MRI's throughout his life based on his symptoms and treat him accordingly. He may need Brain surgery which is sometimes helpful in easing or slowing the progression but has it's own risks so we would only look at that when the benefits outweighed the risks. His next MRI is in March, then we are going to fly to America during the year to go to a place that specialise in this condition. There is a lot of difference of opinion in the medical world of what are "symtpoms" of Chiari, but now that I have had contact with others in the world, it seems to be that some symptoms that are called "not Chiari related" happen to be there in most people with Chiari, so it's very frustating getting him the best help when even the neurosurgeons are not in agreement with each other!



On a good note. We reached our one year anniversary on the 28th Jan since we brought Jeremiah home!! WOOHOOO! In some ways it feels as if it has gone by so fast but on the other hand, it feels like we have always had Jeremiah with us. We apply for a court date, finalise the adoption and then I can finally show you photos of him!!!! I will have to do a big catch up and show you photos of his 2nd birthday, and Christmas (the first of both that we have celebrated with him).



Blessings to you all !!!!!!

just a quick laugh!

A friend of mine ( thanks for the laugh Lisa ), sent me this link, it is definitely worth taking the time to view -

http://video.google.com/videoplay?docid=7331004459878009446

It is seriously one of the funniest things I've seen in a long time. The midget bit cracks me up just thinking about it.

Hope it brightens your day!!

WARNING, toilet talk - look away now if your squeemish

This morning I decided to travel into the city to meet up with a new adoption support group.

Now you think the fact that it was cold and raining and they were going to meet at a playground would be enough for me to guess that they would cancel, but no not me, I busied myself getting the kids ready and off to school, packing food and gear for Jeremiah and me and off I went having a feeling of satisfaction that I was smoothly handling everything.
Of course I rocked up and no one was there, surprise surprise. No problem I thought (still feeling like I had everything covered), I'll just let JJ out of the seat, we can have a snack in the car and travel the 40 minutes back home.

Jeremiah has just turned 22 months and decided he wanted to toilet train about a month ago (well really 3 months ago but I took a while to catch on). I cannot find any jocks or trainer pants to fit him because his bottom is so small, so he still wears an infant size nappy (next one up from newborn which he can also fit in still), plus, the nappy gives him some hope of keeping some pants up. We just put the nappy on and off throughout the day. He only has about 1 to 2 dribble accidents a day but still prefers to do number 2's in the nappy.
BUT not today!

He decided he wanted the toilet...

JJ - toilet, toilet
Me - you want the toilet JJ? (I have a potty in the car for such events, then I just tip it descretely into a gutter - so I'm still feeling like a really prepared Mum)
JJ - Poo's Mummy
Me - (OK not so prepared for number 2's) Umm, you want to do poo's in your nappy JJ?
JJ, - Nooo, toilet!

So to cut a long story short I ended up in the city with no one there that I was meant to meet, the rain pouring down, and sitting in a car with a poop in a potty!!
Whats worse is that when the rain died off, I had to drive to a public toilet, carry JJ in one arm and a poopy potty in the other whilst people driving by had a good old laugh!!
Well, I'm glad the morning wasn't a complete waiste of time - Jeremiah now wants to do poo's in the toilet and I got to entertain passes by!!

Oh one last thing, why is the date on my posts have the day and the month back to front?

God is good!!!

For those of you who don't know, I am a photographer on and off.

So many people have encouraged me to take the final step and start a proper business instead of sticking just to friends and word of mouth but I never seem to take that final plunge. The money commitment would mean that I had to work to meet repayments and I always wanted to enjoy my photography, not injure it.

When I was growing up I never knew what I wanted to do as a job, it always bothered me that friends around me had some form of direction and I had no idea. That all changed when I was baptised as an adult and asked God for direction, what he wanted me to do......photography has been a passion ever since.

I always wanted to use it for Gods work though and could never see how I could..........till a few years ago.....my sister gave birth to a little angel baby, Gabrielle. I was at the birth and spent time holding this tiny little girl that was already with Jesus. Gabrielle barely fit into the palm of my hand, and she was beautiful. My sister fell pregnant again shortly after and tragically we had to say goodbye to another little angel, Alina.

I was able to hold both of the girls and never thought to take photos ( which I will regret forever). I was so emotionally involved and because both the girls where born just before the 20 weeks mark, they where so tiny and unfortunately the hospitals don't consider a baby born before 20weeks as a stillborn, they call it "a missed abortion" which implies that there was some sort of choice in the matter.
But my sister gave birth to her angel girls and although tiny, they where her babies, and both my sister and her husband deserved to have memories of their precious little fingers and toes, the way their tiny lips looked....every detail of their children.
The only photos my sister has are terrible ones that the hospital took 3days after they where born, we had all but a moment of opportunity that we missed and we can never get it back.

Since that time I have wanted to help families capture loving memories of there angel babies. There have been many people I have met since that due to shock and grief never thought to take many photos and all have regretted it.
God continued to bring me closer to this vision when I stumbled across a photographer, Erin Drallos http://www.footprintsphotography.com/ who has a section called "heart and soul". Erin started a program in America where a group of child photographers on a voluntary basis work with family with desperately ill children or who have suffered the loss of a child, capturing lifetime memories in a moment of time.

I desperately wanted to start something up in Adelaide but didn't have the know how to make it work...............Then God lead me to Lia's blog http://www.liahayes.typepad.com/who has the same vision, and the blessing continued when I e-mailed her to let her know that I would love to be involved and found out that not only does she live in the same state, she lives 5 minutes away!! God is awesome!!!

If there is any photographers that read this blog and feel a calling to help, please let me know. The more photographers we have, the better.

Getting back to normal

At the moment the Specialist believes JJ has a condition which has the alphabet three times over in the title..........basically, it is a condition that is not very common ( I hate using the term, rare - it sounds too dramatic ), scientists don't know the reason people get it, but who cares because this condition goes away within 6months all by itself!!!!
The bone deformity plus the high results in the blood tests mimicked bone cancer, but it may just be that by coincidence, JJ had/has this condition and the bone deformity is no more than just an isolated deformed bone.
He has tests to confirm this when he is 2yrs ( in 3months). The doctors opinion sits so well with us and it confirms the word I got from God, " it's already been done " as in he's already healed!!

As far as the overdose they gave him, we have spoken to a lawyer who believes we have a case but it may take years and a lot of money to sort out because it's not a cut and dry case of this is what they did and this is the result. JJ's risk of cancer and other things are greatly increased but he has nothing right now. So we are still deciding whether to continue.

OK...now that I've updated, and if there is anyone left out there that hasn't given up on checking my blog, I am going to post soon ( I promise ). I've been so tied up with all this that it's time to get back to normal ( well, our families version of normal ).

So where have I been??

I'm here, but we had so many things happening and to tell you the truth, I didn't quite know how to write it down. I've had some time to absorb things now, so I'll give it a go..........

To cut a very long story short (well shorter), Jeremiah ended up in our local hospital with a temperature of 40.7 that just wouldn't go down. After some tests we were transferred via ambulance to the main children's hospital.
Every time they ran a test to rule out one thing, it showed up something else. His bloods were so out of wack, for example something that is meant to be between 150 and 450 was 3005, so as you can imagine we ended up seeing different specialist wanting to run their many tests.
It was found that some of his bones are growing deformed and with the other symptoms, they thought he had bone cancer. It was in one of these tests that really put the icing on the cake of an already terrible, heart breaking week.

HERE IT GOES.........
The hospital accidentally injected Jeremiah with an overdose of radiation, based on a 22.3kg child instead of his weight of 8.5kg. When they pulled me aside to tell me, I was in total disbelief....on one hand he didn't have bone cancer and on the other hand they had now increased his chance of getting cancer, liver and kidney damage and many other complications.
We had an immediate prayer chain going, getting angry at that point was not going to help Jeremiah or get this solution out of him, so we prayed for the solution to be like water with no ill effects.

A week or so ago, we had a healing prayer service in our church, and as they prayed for total healing over Jeremiah, I audibly heard Gods words in my head, "it's already been done!". I immediately felt a peace about it.

We have two different issues that we are dealing with, one is still seeing specialists to find out what is going on with Jeremiahs little body and the other is keeping an eye on any side effects from the overdose. This one is hard because it's not like you can run a simple test to see if there is any damage, it is something that can take hold at any time in his life now. For this very reason, you can't live in fear of what might happen, so we are just loving and enjoying our children that we have been blessed with and know that God is in total control.

Don't get me wrong, I definitely have those moments when I get upset over anything happening to my precious baby boy, especially when I'm rocking him to sleep. I tend to hold tight just that little longer, press my face into his soft warm neck, breath in his beautiful baby smell and silently have a little cry. BUT, in this whole adoption process God has moved mountains and I am once again reminded and relieved that God is in total control, and I am faithfully believing his words that he has already been healed!

Our little princess turns 6!

Yesterday, the 28th march, our little girl turned 6.

I picked her up from school early so we could buy a birthday outfit for a very special date, a dinner date with her Daddy. Emily was so excited, Adrian was taking her to a restaurant to be treated like a lady.

Emily had a bath with special smelling "big girl" water ( 2 drops of lavender oil and 1/4 cup of milk powder did the job nicely). Then she prepared herself for her dinner date.

It was so funny, when Adrian got home he wasn't allowed to see her until she was completely ready - earrings, necklace, hair, lip gloss, and a touch of Mummy's perfume over her clothes.







Adrian got dressed up, we all oohh'd and arhhh'd at the birthday girl and then they set off for the restaurant.

Emily had her chair pulled out for her, ate chips and nuggets (we made sure we chose a restaurant that would still cater for kids meals), watched a jazz band in amazement and had a fantastic time.

Adrian presented her with a book called "I'd be your princess". The book is about a little girl talking with her Daddy and imagining all the things they would do together if he was a king and she was his princess, and at the end the Daddy says that " even if I'm never a king and we never live in a castle and never.........etc........you will still be my princess because I love you so very much". He read the book to her and then brought the sleepy little princess home.

The night was such a huge deal to Emily, the next day she said that when they were at the restaurant, she felt like a real Mummy ( her way of saying a real lady).

Adrian and I believe that all little (and big) girls have such a want and need to be seen as beautiful, inside and out, and if they don't get that clarification from their Daddy, then they tend to jump into the arms of the first boy that makes them feel special, important, beautiful. We want Emily to know beyond a doubt that she is a princess of God, that she is beautiful, and that she is loved. Hopefully we can install a security in her so that when she grows up, she will know who she is in God and not seek the security that she's worth something in the wrong arms.

Bits and pieces

Well, I am writing this blog because Jeremiah slept for the first time in his own room, YIPPEE!!
He was sleeping in our room (partly in the porta cot and partly on me all night) which is also where the computer is, so now I should be able to update my blog more often. Adrian and I are also able to get some more "cuddle" time, which we are extremely grateful for (especially Adrian).

A few weeks ok we had the dreaded gastro in our household. When Jeremiah had a bout, good old Daddy was trying to show him what to do with the bucket by dry reaching into it.
So then I had JJ on a towel on my lap never knowing when he was really going to be sick because he took great pleasure in the newly taught sound effect of vomiting into the bucket.....good one Adrian!



JJ's first trip to the beach - he absolutely loved it , he was a bit wary of the water at first but he's definately a water baby, and only ate a little bit of sand which is pretty impresive for a 17month old. I think we will have to visit the beach more often.


After the gastro bout, Nana Dee and Papa Don came to visit bearing lollies. Jordan and Emily had a lot of fun seeing how high they could stack them.

They figured out that if you lick each lolly thay have a better chance of sticking.

Which also meant that the stack then had to be eaten in one go. Nothing like a bit of nutrients after being sick!

We went to my nieces wedding, which was sooo beautiful, they are such are great couple.

Seen as we were all together and all dressed up, we tried to get a family photo, which is very hard because JJ will just frown and not smile when it isn't one of us behind the camera. I love this shot of the kids together though. I love my kids so much and am incredibly greatful to God for our sometimes "nutty" little family.

some pics

Climbing everything and anything is also a favourite past time, which is fine except for the no fear of running off the edge when he wants to get down.

JJ loves his baths and says bath at any given opportunity. The orphanage washed the children by pouring cups of cold water over them, so for Jeremiah's first bath I sat with him in 2cm of cold water and slowly filled and warmed the bath. He was so amazed that his foot kept floating and has since discovered just how wet you can make mummy with splashing!

Apparently, this toy highchair is not for dolls to sit in. JJ ditched the doll, knocked the highchair over and found it's true purpose....to make really loud sounds whilst dragging it on tiles!

This phone was the first toy we bought in the Philippines, because he constantly wanted ours. JJ didn't play with it over there, he just wanted something to hold. Now he loves to "talk" on the phone and has just figured out that my phone takes pictures, so this is JJ taking a picture of himself with his toy phone.

This is my beautiful sister Samantha, she was the first person I hugged when we arrived at the airport. Sam has travelled this long road with us very closely, so you can imagine how emotional she was to meet her new nephew.

JJ will pick up any bag, no matter how big or heavy, put the straps on his shoulder and wave bye-bye. This bag proved too heavy, so with many failed attempts, he decided to drag it to the front door and dump it there as if to say, "this ones a dud, get rid of it!"

Jordan made this welcome home cake, it was so special that all of the kids had their own way of welcoming their little brother (thanks to Phoebe).

I've said before how I'm not allowed to show any distinguishing photos of Jeremiah on the web until our court day in a years time, but I can still e-mail a photo, so if you've been tracking my blog and want to see a photo of Jeremiah, I'd be proud to e-mail you a piccy. I don't know how you do that, if you leave an e-mail address in comments or some other way, so if anyone knows how, please let me know.

Life in the day of JJ

Jeremiah is 16 1/2 months old now, he is 73cm tall and weighs 8.3kg (he's slowly gaining weight).
He has the smallest little bottom, it's so little that we have him in infant nappies and the tabs still cross over....so cute!
He's a smart little guy, the carers ( called Aunties and Uncles ) in the orphanage spoke to him in Cebuano, but he is picking up English really quickly and knows what I'm on about most of the time. I just repeat the English and then the Cebuano word for those I know to help him out. Still there are times he keeps repeating a word over and over and I have no idea what he's saying, and I can't find it in my translation book ( it is 16month old Cebuano after all ).

Food wise, he loves any mushy fruit, over cooked mushy rice, and sultanas. We are still working on finger foods and vegetables. I carry sultanas around all the time so he knows that food is always available to him but he still gets into the bin now and then and stuffs food into his nappy for later, Sometimes it's not even eatable, a banana skin or a tea bag.
I need to clarify that JJ's orphanage was one of the best I have seen or heard of, they really loved and cared for him and we will forever be thankful to God and the workers for doing their very best for JJ. They all have an enormous faith in God and treat the children wonderfully. In fact, the day we left, JJ was so distraught to leave, I even wondered if we were doing what was best for him. They loved him, he loved them and this was his home since he was 6hours old. He seemed very settled in his life there and had all his friends around him.
Now I can see that no matter how well an orphanage is run, how much the children are loved, it never replaces a family that can provide that individual attention when they need it, with 75-100 children at any given time, it is impossible to comfort every hurt, cater to hunger outside of set meal times, and so much more that instills security, love and peace into a child that enables them to grow to their full potential. So although JJ is doing fantastically because of how well he was treated, there are still so many hurdles to overcome.

Sleeping is probably one of our toughest issues, but we are making progress. He was sleeping with his eyes wide open, poor little guy, so much insecurity and learnt protection skills shouldn't be there in anyone, especially a 16month old. He closes his eyes now but still wants to sleep on me, koala bear style (which is not the most comfortable position for a side sleeper). He can sometimes take hours to go to sleep and when I can safely put him down without waking, he sleeps for 15mins and then that's it for the day. He wakes restlessly through the night, his little arms and legs don't stop moving, searching for comfort and he needs to tuck his hand up my sleeves. What amazes me is that although he gets so little sleep, he doesn't sit still, he's always on the go, to the point where I have to massage his legs and hold him because he doesn't seem to know what to do with himself, he seems a bit lost and can't get himself to stop.
During the day, he is much more settled, is fine to visit new people and places and is happy to explore and walk off from me as long as I am sitting down. So he can walk away from me but not me walk away from him, which means housework is on a definite back burner at the moment.

He's learning to respond more to pain now. He use to knock his head really hard, slam his finger in the drawer and not bat an eyelid. JJ is still a tough little guy but he'll come to us and cry a little now. We don't want him to become a sook when he has the slightest bump but he needs to know that we are always there to comfort him. He has never had any tears since birth so it's also important for him to audibly cry or to indicate when he has been hurt, especially when he goes to kindy or is with someone else.

Have to go, I have been typing one handed with him asleep on my chest an he is just waking up, i will try to get some pictures up tonight.