First post for 2011

It has been a long time since I have posted... I forget that not everyone is on FaceBook!
Ok, so Christmas has been and gone, and we are well into January!

Before I get onto Christmas photos and what has been happening in our lives, we have been officially given the dates for Camp Sunshine 2011.
It will be happening at the end of June, which means that Jasper and Paul will both be celebrating their birthdays there... IF we can get there!
For those that do not know, Camp Sunshine is a place in America that is set up for families that have a deadly illness. Fanconi Anemia - what Jasper has - is considered such an illness.
It is hard to reconcile that in my brain - he is my boy, after all, but it is what it is, and we just need to deal with that.

What we are wanting to know is if anyone has Qantas Frequent Flyer points that they would be willing to transfer over to us. This would help immeasurably with the cost of travel to the States. We did not make it to Camp Sunshine in 2010, as Molly was too young for immunisations, so we are really wanting to get there this year... Especially as Jasper would celebrate his 8th birthday surrounded by people that know what we live with, having FA.
If you can help us, please email me at pbj.miles@yahoo.com.au and I can tell you how to transfer points. It is really pretty simple.

Ok, family update time...

Jasper is on school vacation for summer, and goes into second grade in early February. He will be 8 this year.. the time has flown!!

Molly is now 8 months old, and a real treasure. She has been sitting up for a couple of months now - as you can see from the photo..












She loves her big brother, and cant wait to get mobile to chase him around the house! As you can see below, she gets on all 4's (with a bit of help), and rocks away! It wont be long before she is tearing around the house causing her momma grey hairs!!









Here are my 2 Christmas angels just before Christmas. We put the antlers on Molly, and she spent the whole time trying to look at them, with the bells on them! Very cute!
Jasper was also an angel for his school nativity. The entire Year One's dressed the same, and they looked angelic, even if they did not behave angelic!!!














We spent Christmas in Busselton (about 3 hour drive south from us), with my family, so on Christmas Eve before we left, we let the kids open the presents under the tree from us and Paul's dad in Sydney.
Poppy Miles got Jasper a remote control helicopter (do you think he looks excited much!)
Poppy Miles got Molly a floating seat for the spa. she loves it! It gives her the freedom to kick and move around without being held all the time. She is a natural water baby, and loves her swimming lessons, as well as spa time at home!











Paul's mum also came to visit in early December, which was really nice. She could only stay for 4 days, but it was nice all the same! We had an early Christmas dinner celebration with her, and presents for the kids... (all of the kids!!). Brent came over (Paul's eldest son).
I managed to snap this pic of the kids together... Brent and Molly are still getting used to each other! It is funny to watch her analyse him! Jasper is the buffer in the middle... ALL the time! (a role he relishes!).









Miss Molly in the laundry trough.. it is her bathtub at the moment, as it is a long way to the ground in the bathroom!! She will need to move to the big bath soon... she is getting a little big for this sink!










We have had some super hot weather lately, and one day, we spent most of the day at my parents. They have a pool, so a bonus reason to visit! Jasper normally wont get in because the water is pretty cold, but on this day, I could not get him out!!! This is his "5 more minutes" pleading face... needless to say, I caved... how can you say no to this face!!!









I think that is about it. Paul and I are doing well, the kids are well and healthy.
We will soon have a veggie patch up and running, so are pretty excited about that!!
I will try and do better at updating in 2011 - but no promises!!

Jasper does not have any more blood work due til late April, and then it is his bone marrow aspirate (the operation he has annually).

Thanks for reading, and remember, if you can help with Qantas Frequent Flyer Points, or know someone who can help, please email me at pbj.miles@yahoo.com.au

Brooke
xxx

Jaspers Latest Blood Results (and general family update)

When I say it will be a family update, that really means a Molly/Jasper update!!!

So, first and foremost, Jasper lost his 4th tooth!!! now ne is a goofy-gap kid and lisps when he talks!! We were at the beach, and it had been bleeding a few days previouly (and with my total fear of blood, it was a delight to behold!!). jasper was eating some watermelon, and his tooth started to bleed again... my friend told him to just pull it, so he goes "ok" and out it comes!! I was REALLY struggling to not throw my lunch up everywhere... there was a little bit of blood... gross. there are some photos below of his gap... it is HUGE!!!

So now, we are missing the bottom 2 and the top 2. The bottom 2 have the adult teeth coming in, but the top is empty!!

Here is a photo of Jasper and his Molly at the beach (Molly's first time!). The first photo is Molly at home getting ready! She is such a cutie, and a sweet little thing. The only thing missing from her world is a trip to Camp Sunshine!!!










Here are the kids... Jasper is splashing Molly... the water was freezing cold!!!










Here's Goofy!!

Paul got creative with some iron on transfers... there was another one of Molly in a "Camp Sunshine" top, but it has not uploaded for some reason?!!??!

I got lucky when I had Jasper.. he is the sweetest most caring big brother a little girl could ask for!

So, Jasper had his bi-annual blood test today. We got prior warning from the hospital that they needed more blood than normal, so we could not just have a thumb prick... it would be a vein drain (like a normal blood test). There is not a lot of control Jasper can have with Fanconi Anemia, so he gets to choose a thumb prick or a vein drain. He ALWAYS chooses a vein drain.

I am lucky that the oncology department that looks after Jasper understands his fear of blood tests, and gave me plenty of notice for the change in plans. We got the EMLA cream out, and it worked a treat! He still cried and cried, but he sobbed through his tears that he could not feel anything!!! Cheeky tyke. It is just the anticipation and the build up to it all.

So, here are the results...

Height: 114.8 cm

Weight: 17.3 kg

These are both increases, and we are happy enough with this.

WBC: 6.10 (normal is 4.5-11.0) -

These cells are the body's defense. They fight infection.

ANC: 2.50 (normal is 1.50-8.00)

This is the body's ability to fight infections.

Platelet: 163 (normal is 150 - 400)

This is the clotting ability of the blood. A bone marrow transplant or regular blood transfusions are given when platelets are at or below 20.

RBC: 3.53 (normal is 4.0-6.0)

These cells carry oxygen.

HCT: 0.35 (normal is 0.35 - 0.45)

Measures the proportion of blood volume that is occupied by RBC.

HGB: 123 (normal is 115 - 155)

This is part of the cell that carries oxygen

MCV: 99 (normal is 75 - 92)

This measures how large or small the cells are (the higher the number, the larger the cell). It also can indicate how stressed the marrow is. The higher the number, the more stressed.

So, all in all, these results are FANTASTIC and we could not be happier!!

Jasper did really well with his blood test, and got a new NERF gun as part of my bribe to get it done with the minimum of fuss.

Molly is 5 months old today... where does the time go?!?!

I am sure to update some time soon... there is probably a lot to tell, but it is school vacation, and my brain is a little bit mushed!!

Thanks for reading!

Love

Brooke

Molly back in hospital...

On Wednesday, Jasper had an appointment at the Children's Hospital here (PMH) with the endocrinology department. It was a regular 6 monthly check. Good news is he is growing enough and putting on enough weight to be discharged from their department! Yippee!!

Molly has not been gaining weight. She has actually been losing weight. I went to see our local doctor on Wednesday last week about it, and he said to come back in a week. I went back the following Wednesday (this week), and he was happy that she had put on 15g - normally babies should put on a minimum of 100g a week at her age. He said to come back in 2 weeks.
I went to see my child health nurse the same day as I was not happy with the doctor's answers.

She was mortified at the doctor, and wrote me a referral for the emergency department at PMH. Not that you need a referral, but it helps them not think you are a neurotic mother!!!

Since we were at PMH for Jasper's appointment, we went to emergency once we had finished with him.
The doctor said that nothing about what was happening with Molly was good or normal. Basically, she had to be admitted to hospital to figure out what was happening... and by the way, could I collect a wee sample from her..

I remember doing this when Jasper was a baby, and that was easier... boy bits vs girl bits!!
She was really upset laying on the bed with no nappy and me hovering around her rear end waiting, waiting, waiting.
After about 15 minutes, I picked her up and cuddled her... she wanted to feed again (big suprise - that is a common thing for her after 3pm... constant feeding), so she was breast feeding, and I am trying to hold her with one arm, hold the specimen jar with the other and keep an eye out for the pee!!!
I wish we had the camera, it was quite a sight!!! THEN when she did pee, I nearly missed it, and she got it all over me and the floor!!
Jasper and I were in hysterics about it!! Lucky it was only on my ankle.. I had a towel thing under her butt.

Ok, so wee sample was given, and initial tests showed no UTI - excellent! They wanted to do further tests though.

Then came the bad news... we were being admitted, but there were no beds at PMH, so we needed to go to Joondalup hospital... it is closer to home, and the doctors we saw are PMH staff, so that was some comfort.

I drove Japser home to stay with Paul - lucky he is home at the moment! - then hightailed it to Joondalup hospital.

PMH didn't tell me that they had put Molly's wee sample in the paperwork folder... maybe they should have! It was under the pram, and ended up pretty squashed, but lucky for me it did not break!

They got a stool sample the next morning - which needed the camera!! Poor Molly had on 2 diapers - one that had plastic on the outside that we had to put on her backwards so all the "good stuff" did not soak in, and they could get what they needed, and a larger one on the outisde to collect any potential leakage! Nice picture, huh?
I told a nurse when she filled it, and she gave me the sample jar to collect... UM, NO THANKS!! I was trying to eat my breakfast, so left her to it!! Molly was full of smiles!

They weighed her at 1am on the Thursday, then later that morning, then again Friday morning.. turns out I am starving my baby!
Talk about feeling guilty. Seems my milk supply is not all it thinks it is, and she is not getting enough. This is pretty confusing because she sleeps so well, and if you are hungry, you are normally cranky and dont sleep... She goes for up to 7 hours at night, so I was pretty confused.

To make a long story longer.... I am back to being Daisy the Cow... I breastfeed her, top her up with a bottle (not that she really wants it, she is pretty happy after the breast feed, so it is force feed, but my lil piggy takes it!), then express for 10 minutes or so to make sure I am drained of all potential milk (this helps me make more for her next feed... all very scientific).
I have to wake her if she is asleep to feed every 3 hours in the day, and just whenever she wakes up at night.

I thought all this time consuming rubbish was behind us, but it cant be smooth sailing for us just yet!!!
I really want to keep breast feeding if I can, but we will see what happens. I know that at the end of the day, I need to do what is best for Molly, and that is what is best for me too.
She is such a content happy little baby, we just want her to be chubby too!!!

So we are home, and Jasper is totally excited. He missed me, as I missed him. Although, he tells me that daddy is now his best friend! (I think some good bonding happened while I was away!).

So to sum up, Molly is too skinny, but we are forcing her to chunk up - and she is happy to pig out every feed!!!

I need to take her back to the hospital to weigh her on their scales again next week, and we go from there.
I have borrowed some scales from the hospital where she was born (along with an expressing machine - what I call the torture chamber!), so I can weigh her before and after a breastfeed to see how much she is taking in from me, then top her up with as much as she will take from the bottle.
Bottle feeding is time consuming (the prep, heating, cleaning etc), and I am too bone arse lazy to do it for long. So in the words of a good Texan lady "go ninja boobs, do your work!!".

One good thing about being in the hospital when we were is there was a lady (and I use that term loosely Kelly) with her 6 month old darling in the bed opposite. We hit it off, and are now firm friends! It was really nice having someone there to whinge with and keep sane with!!

Signing off for now...
thanks for reading

Brooke
xx

Jasper Turns Seven

Our little man is officially seven!!
He had a great day, getting spoilt and loads of attention at school!
He woke up at 6am (normal time - poor momma). We had presents straight away - in bed of course because it is winter here, and pretty damn cold in the mornings!

After a day at school (where he slacked off, and had to bring extra work home to do as he could not be bothered doing at the time!!), full up on chocolate cake, more presents from his best friend, then out to dinner with the Perth based family.

It was Jasper's choice of restaurant, and he picked The Hog's Breath Cafe - no real suprise.. it is a steak house, and he loves it there!

Here he is with his poppie (my dad).








and with his grandy (my mum).








They bring out a sparkler on the dessert and the staff all sing happy birthday.. he was a bit chuffed at that!!!
He did say that he wanted cake, but he had cake on Saturday for his dad's birthday, cake on Sunday at his best friends birthday, and cake at school on Monday for his birthday... I thought that was enough cake, and he was lucky to get ice cream with chocolate topping!!




Our big boy. He was doing his silly photo face. He thinks it makes him look cool....
He just looks damn cute!!!









Molly had her first trip to a restaurant. She was mesmerised by her best friend that seems to follow her around everywhere... She is forever staring at the ceiling at this friend.
We are not sure if we should be concerned not!!
See below for the photo of this friend that she seems to love so much...

yes, it is the airconditioning vents.. in the house, at the restaurant and even in the principal's office (yes, Paul and I had to speak to the principal...) she is mesmerised!!!






So now all the birthday hoopla is over for another year... well, that is if we can get away without having a party... not liking my chances. Jasper keeps asking, and we are thinking about it. There is no rush. It is about to be school vacation for 2 1/2 weeks, so he can have a party after that - maybe!!!

thanks for reading.

Brooke

Baby News and Big Boy Birthday

So, we have our miracle!!
Molly was tested for FA, and her cord blood was tested to see if it was a match for Jasper.
The results are in, and she DOES NOT have Fanconi Anemia, and she is a 5/6 HLA match for Jasper.
In short, this means that if Jasper goes into bone marrow failure (which is likely with FA), we have matched cord blood from a sibling to do a transplant with!
It was almost too much! It was what we had hoped and prayed for, but when we got the answers, we were just a tad excited!!
There were plenty of tears from this momma!

Here are some photos of our baby girl, and big boy. Molly is about 7 weeks here..









She had enough of the camera, and wanted a cuddle!!!









Jasper and I managed a great escape! Molly slept one afternoon after school - normally unheard of - so we raced into his room and played superheros on his bed... here is the pile of them doing "stacks on".
We also ran around the house pretending to be birds, but as birds do not have fingers or hands, there are no photos of that one!!













Molly's favourite time of day is bath time. She just chills right out and lays there kicking happily. The tears start again when I pull her out and dry her off!










This is the result of after a bath!! Not even the bright camera flash can wake her!!!








Tomorrow is Jasper's 7th birthday. He has been waiting so long for it! We are having a family dinner out, and maybe a party in a couple of weeks - we are still debating that one!
He would love any messages for his birthday!

thanks for reading

Brooke

The Baby is Here

I keep forgetting to update.. oops.

Jasper became a big brother on Tuesday 4th May at 1:51am. He was sleeping peacefully at my parents while Paul and I were at the hospital welcoming little Molly Ann into our family.
She weighed 6lb 9oz and is a delight.
The sleep deprivation is not the best, but that is why they make babies cute, right?? When you look at their perfect little faces, you can almost forget the exhaustion!!! (I said ALMOST!).

Paul was due to fly out on the day Molly was born, but obviously that did not happen. He was home for 2 weeks, which was really nice.

The labour was suprising and FAST. The midwife said on the Monday that they would book us in to be induced on the 12th May as I was nowhere near ready - my body was hanging onto that baby!!!
Hey presto, 24 hours later she was here!!! The labour was 3.5 hours and we only just made it to the hospital in time!!
They got a bag full of the cord blood and are currently testing it to see if it is a HLA match for Jasper. We wont know for a little while, but we will know at some point!!

Molly did not sleep for the first 4 days, and now she is almost 3 weeks old, we have some really good days and nights, and some not so good!! It will all happen in time, and on those bad days, I tell myself that it does not last forever.

Here are Paul and I with Molly, just an hour old.








Ok, so she slept a LITTLE bit in the first few days, just not a lot, or enough for Paul and I to get any! But see what I mean? Totally heart melting cute... and identical to Jasper when he was born!









Me with my babies








Japser is a very protective big brother, and never seems to stop kissing and cuddling his baby sister. He was a bit wary when he first got to the hospital, but was ok once he was with me and could hold her!!! This photo makes me smile. He looks so proud and is holding her all by himself. She was only about 15 hours old at this point!









Molly likes to have her hands free, and not be swaddled when she sleeps... she is truly a Camp Sunshine baby... we do a dance thing at Camp to the song "Hand's Up", so it is cute how she sleeps! (she is our Made In America baby!)










I have a million photos, but these will do for now...
thanks for reading.
Jasper is playing, and Molly is just waking up for ANOTHER feed!!!
Better go.

Brooke
xxx

Update

I cannot believe the last update I did was Christmas!!! And now it is mid April - wowzers!
Lots has happened, and there is a lot to still come!!

Jasper has finished his first term of Year One, and just this week started Term 2. He likes it so far, although there was a debacle this morning with the shoes and socks for winter uniform... It seems crazy they are in winter uniform already, but it is policy, and the shirts are short sleeved, so not so bad without the pullover.

In the 2 week vacation to Easter, Jasper had his bone marrow biopsy - just the annual one... it is a major operation, but we are kind of used to it now. It was the best one ever (if that is possible). He woke up out of the anaesthetic really well, and we were discharged by 1pm... normally we are still waiting for him to wake up at that point!!! There was no real pain, and minimal bruising. It was strange - good strange!

So far, all results we have are positive and good... just like we expect from Jasper - he is a trooper!

We have also had 2 teeth come out and be whisked away by the tooth fairy! It is all very exciting! They fell out within 4 weeks of each other, and there is already one adult tooth coming through!! Our baby is growing up fast!

Speaking of babies... I am still pregnant. 2 weeks to go til my due date, so we just hope that Paul is home when she decides to arrive.
Jasper is excited to have his sister arrive... we will see if that enthusiasm remains after she actually comes!!
Everything that can be ready, is ready.. we just need a baby!!

I can't upload any pics of my baby bump.. the card reader is not working, but here is Jasper with his tooth gap!!

He is pretty proud!!






Ok, I guess that will be it til the baby comes..
thanks for reading.

Brooke