Saturday Shenanagins

Well, I knew today would be busy... AND FUN!!

Maybe the first part wasn't exactly "fun", but it was us all together, as it should be.

Our boy, Eric, came home yesterday.. Or to be more exact, his ashes. Jasper was really happy to have his boy home. So was I.
So, this morning, Paul and Jasper dug in the back garden, while Molly climbed on the slide, and I watched.
Eric's father, Mitch, is buried in the same spot, so we wanted them together.

They now rest side by side, and it's easy for Jasper to go and sit there and talk to Eric if he ever feels the need.

After all that, it was tee ball time. Jaspers team has the tough and scary name of Embroid Me. The teams in the Under 9's are named after their sponsor..
Jasper played a rocking game, and was awarded best player by his team. He got a free sausage sizzle and a trophy for the week!
A great way to end the morning.

a girl and her poppie... is there any sweeter sight?

 Dusty and  happy after sliding into home plate for the 3rd time.

After Molly had her nap time and we had all had lunch, we headed down to my folks place. My two nieces and one nephew were there for afternoon tea. Since I have not seen them in about a year, it was lovely to catch up with them.
Jasper misses his cousins desperately, and Molly doesn't really know them at all, so it was nice watching them all know each other again.

Oh, and we planted our veggie patch last weekend.. things are looking SWEET!
The beetroot seeds are sprouting...

(there are purple and green worms there, I promise)

The corn seeds have sprouted!

The snow peas, tomatoes, strawberries and lettuce are also looking good... it is only the basil seeds I am waiting to sprout.

I have been asked by Jasper's school to get his eyes tested. He has also been sniffing a LOT lately, and our GP said it was just from an allergic reaction, so said drops and antihistemines for a while... today he woke up with blisters over his left nostril.
I am not too concerned, but have emailed his haematologist for a referral for his eyes, and also for advice on the snozzer!!
thanks for reading, will update again SOOOON!!

Brooke

November... already??

Ok, so aside from changing the blog address, there is not much more to report.

I decided to change the address from JASPERMILES.BLOGSPOT.COM to JASPERANDMOLLY.BLOGSPOT.COM , so I can tell both their stories, not just medical stuff for Jasper. That can tend to get a little lonely!

I will start with the exciting news... Yesterday I got a phone call from a magazine who is already doing an article on Jasper and FA.. I will tell more when we are published.. The lady on the phone said they wanted to nominate Jasper for an award as a Young Braveheart for 2011. It is very exciting. Just him being nominated is a huge thing. If he wins, we get to travel to Sydney for an award presentation and he gets some awesome prizes!
It would be fantastic awareness of FA in the community too!! More news to follow as it comes to hand.

Now onto the sad news.. We had to get our dog put down last Thursday. We have had him longer than we have had kids.. he was 11 years old, and his name is Eric.

The vet was 95% sure he had lymphatic cancer. He was almost totally blind, and had glaucoma in one eye.. The pain from the glaucoma was enough to decide to put him down, and it wasn't easy.
He was Jasper's best mate, and he was pretty devestated about it.
We had talked about the possibility of losing Eric for a while, but trust me, it doesn't make it any easier.
He was a pretty cruisy dog. Black, and gorgeous. He was my first baby, and my heart is heavy with his loss.
There is no boy sleeping at my back door.
There are a lot of holes.

I think Jasper feels it more than I do. Mainly on the weekends, when he is outside a lot more, and his mate is not there. It will get easier. I know it will.
Eric was Jaspers number one fan from day dot. With Molly, he took longer to warm to her, and it was only in the last few months he would not want to be outside when she was awake inside!

Lastly for this post, Molly had her 18 month immunisations today. She was a trooper and no ill effects - so far..just general crankiness which is not her usual style.

More soon

thanks for reading.

 Brooke

October Update

Ok, so I have been spending a lot of time reading other blogs, and not posting on our own one... seems to be that I cannot update from my iPad (so much for fancy technology), and sitting down at the desktop for more than 10 minutes and thinking of things to type is too much to fathom sometimes.

We are currently on week 2 of school vacation. It has been JAM PACKED. Something to do almost every day. It has been quite nice to have the weekends with nothing to really do, just play and house work.

We had Jasper's 3 monthly blood counts done today. The results were ok.
Not down from last time, but not much up either.
Last time Jasper's platelets were 110, today they were 130. Slight improvement, but not much... better they go to 130, rather than to 90 though!! AND 130 is a pretty excellent count that any FA mom would love her kid to have.

I was going to do a comparison of other blood counts from previous months, but it seems that when I moved all my data from the desktop to the external drive, it all got corrupted, so now I have stuff all to compare and need to call the hospital for another copy of all our blood counts.

(I am aware I say "our" when referring to blood... it is ours, he is mine, I claim it!)

Molly came with us today. My dad offered to have her, but I wanted her with us as a welcome distraction in case the numbers came back worse than last time. Lucky she wasnt needed for that!

She has just turned 17 months old, and definately has my nose (nice one!), chin (not so lucky) and temper (totally horrified at this one!). She is very vocal and forceful with what she wants, and tantrums it out when things dont go her way... not with her dada..
NEVER with her daddy, only with her momma and brother. Screaming, hitting, bending backwards when being taken to get her diaper changed when she is in the middle of reading to the dog...
I can see I am going to have my hands full with this one.

I am so SO sorry to my mum and dad for my childhood behaviours and the events that led to me needing to see a psychologist at the age of about 7 or 8 (I stand by my conviction that this was my sisters fault!!).

This week, Jasper officially starts tee-ball with his first training on Thursday. Games start Saturday week. He is pretty psyched, and has his own glove, bat and uniform. Talk about super CUTE!!
I will update more with photos soon!!

Thanks for reading.

From the Crazy Farm

Brooke

USA Update

Well, better late than never, I suppose!! I do keep meaning to get to write about our trip, but something is always getting in my way... school run, sick baby, laziness or the necessity for sleep!!

This is our family photo before we left home. Brent was here as he house sat to mind the dog while we were gone.
Molly looks quite sprightly for being woken up at 8.30pm!










Our first stop was Sydney. Paul's dad and brother came to the airport to see us, and meet Molly for the first time.
Then it was time for the long haul to LA.










The kids were excellent. Jasper has always been a WONDERFUL traveler. I think it helps that we tell him that, so he does what is expected! He eats, watches TV, and sleeps sleeps sleeps! It is a really good thing. I was worried that Molly would be a nightmare, but she travels like her brother!
Between Sydney and LA, there was a baby across from us who cried, whinged and screamed most of the way - nice and relaxing - I just wanted to stand up and shout "it's not my baby!!". She was a dream!

Here is what the kids and I looked like when we landed in Boston... our final destination. Jasper looks SO happy and excited to be off the plane!










We spent one night in Boston (well, technically it was Swampscott) with a wonderful friend, Leighsa.. THANKS!! We were not very good company that night.. we tried and failed with a CAPITAL F!!!
That 12 hour time difference was not fun for any of us, especially Jasper.

After that first night we drove up to Maine (and by "we", I mean Paul). We stayed with another dear family, the Youngs. They have 3 great kids, and the youngest has FA like Jasper. They are the same age, and have the same FA complementation group. We got asked at one point if they were twins... kinda cute and freaky!

Here we all are at the desert of Maine. It was an interesting trip... who knew there was a desert there!!!










From the Youngs it was time for Camp Sunshine. It was great, as always to see our FAmily and catch up! 2 years was too long!!!

I have a million photos, but will only post a few..
Jasper and Paul both had their birthdays at Camp. Jasper was super excited... Paul was not so much when the "boys" got him up on stage during dinner to embarrass him!! They were both great days!
Here is Jasper blowing out his birthday candles at Camp. He is sitting on his favourite counselors lap, Tori.. well, one of his favourites!!








As usual, we have Jasper's mouth swab done for a study our favourite Germans are doing into the early detection of oral cancers. We always have a photo taken with Ralf and Eunike. This time, we took them Aussie chocolate!(they always provide delicious German chocolate for us!).








They always have an ice-cream sundae night at Camp, and this year there was a bit of a whipped cream fight... needless to say, Jasper got it right in the moosh!! (and loved every second of it!)








The masquerade ball resulted in the greatest turn around in history... Molly was SUPER tired (Camp does not encourage sleep at ANY time of the day or night!!). We dressed her up as a little Moo Moo, and took her up to the dance in her stroller thinking we would make an appearance and take her back to bed. WELL, she was having NONE of that!! Once she heard the music, she wanted out of her buggy and grooved away for HOURS!! it was very cute, and she slept extremely well that night!














There are a million more photos on FaceBook, but I think that will do for now!

After Camp we went to stay with our American sister and her mad crew... the Flynn/Gummoe family. With us there, we had 4 adults and 10 (yes, T E N) kids!! It is busy, but it worked!!
Here are some of the kids at Fort Williams - lots of old forts, and a lovely place to walk around and have a picnic lunch if you get the right weather (which we did!).
These are the FA kids that were with us.
(L - R) Wesley, Jasper, Julia and Jorja (twins) and Jordan at the front. The girls all belong to Doreen (my American sister).








Here are my 2 best girls - Jordan and Molly.
Gorgeous!











Ohm here is ONE more Camp photo... These are some of the people that mean the world to us.
We are in "couples", so left to right, Paul and I, Sean and Kristin (aka the YOUNGS), David and Samantha (our UK FAmily), and Shawn and Doreen (aka the Flynn/Gummoes). Our entire trip (all bar the first and last night) were spent with these wonderful people, and just thinking about them makes me smile!









We got to spend 4th July in America for the first time. The FAmilies in the photo above all got together with some of Doreen's neighbors and had a great BBQ, then we went to see some great fireworks.
Molly's Aunt Kristin bought her a beautiful dress in honor of the holiday, and she looked so beautiful!!!












Here is our gang at the fireworks (kids and all!)









Me and my babies!!









We did go to a theme park, FunTown SplashTown, but I didn't take the camera there... I went on scary rides. ME, on scary rides!! (WHAT was I thinking!)
We did try to go blueberry picking... epic FAIL! The season had opened, but the blueberries weren't ripe.

There was a LOT of Wal-Mart shopping. I mean A LOT! It is super cheap, so why not!!!

There is so much more that I could report on, but my brain is fried now, so I might try again later on another post!

Jasper has had more blood work since we got home. His platelets last time had dropped to 120 (normal range is 150 - 400), so this was a concern for us. It was the lowest they had ever been, and we were obviously concerned and wanted him rechecked.
Well, his latest platelets were 110. In the grand scheme of things, this is not a real change, but it is not a move in the upward direction, so back we go in October for more blood work!
Fingers crossed we get an upward movement.
All his other counts were ok. Red Blood cells were just under normal, but only fractionally, and it was all pretty consistent from last time.

Please leave a comment for Jasper if you can.. he likes to know people realise that he is "famous"!

thanks for reading.

Brooke

Medical Update and the Marvels of Kids

Ok, so I have good news in that Jasper's biopsy results came back, and they are all good!


His thyroid function is good, but his cholesterol is high. We are looking into what we can do about that... it has always been high, and the doctors are not sure why, so we are seeing a liver specialist at the end of July to see what changes we can make to reduce Jasper's cholesterol to be in the "normal" range.

We will also have more bloods done on the same day to check all Jasper's counts again. Fingers crossed his platelets have bounced back up, and his last counts were just a temporary blip on the radar!!

Well, today was the coldest day I can remember in a long time. We have had some really cold mornings, but it has been warming up nicely in the day, and by the time we do the school run in the afternoon, the jumpers have been put away and the sun is just delightful.. but today, the jumper was on all day, the scarf stayed on (for added warmth, and not just to be a fashion accessory), and the ugg boots replaced the covered shoes as soon as we got home!!

I am looking forward to heading to the summer weather of Maine in a few days as we jet off to America and Camp Sunshine for our 4th time.

Maine had BETTER bring the warm weather!

We are super excited to see all our FAmily again, and spend some quality time with some very special people.

Jasper is looking forward to turning 8 at Camp Sunshine, and Paul will turn "21" there too. Molly wont know what hit her with all the people that will be queing up to snuggle her!! Lucky she is learning to run.. I think she is going to need that skill!

I know this is Jaspers blog page, but I must share some of the things Molly can now do and say.. she is a genius in the making - I am not biased, I am just confident....

She is a good walker now, and crawling is a thing of the past.

There are 10 teeth in her mouth.. 4 of which are molars.. she got her first molar when she only had 2 bottom teeth at the front and one top front tooth... nothing like doing things the way she wants to, rather than by the book!!

Her favourite words are still JASPER and DADA. She knows who is who.. you ask her "where is daddy" and she looks at Paul. "Where is mummy" results in me being looked at.. same for jasper, poppie and grandy. She knows who her dog is too.

Cheeky girl also likes to drop things from her high chair, put her hands palm up and say "gone, all gone".

Other words she says are : hello, ta-ta (for goodbye), thank you, ta, eagle (sounds like ee-ga).. I am happy about the Eagle one,,, it is the name of my favourite footy team! She makes animal noises for dogs, cats, sheep, dinosaurs, sheep, and a range of others.

She loves to dance. She IS the dancing queen! it is very cute when she shakes her booty, and even better when the arms get pumped in the air.. I need to get the video camera ready!

Like most babies, she loves to hold the phone to her ear and say "hello who is it" in her own jibber jabber.

She knows when she has had enough of something, and shakes her head. she has started to tell me "no" as well.. if I growl at her for something, she growls back at me! (cheeky!)

If I tell her "sit on your bottom", she either sits or squats.

She is a total daddy's girl. It is sweet how she only wants him, and not me when he is home.

Molly LOVES the sound of her own voice (a bit like her brother, and MAYBE her mother), so she chats away all day in her own language.

She loves the shops too. I am not a lover of shopping, so I do NOT know where this gene came from. I think she just loves the social aspect of being out and waving hello to everyone, especially cars in the carpark!!


Oh, one story I must share about Jasper that had me giggling.. the other day on the way to school, they were talking on the radio about an interview that had been done with our Prime Minister, Julia Gillard, and her partner, Tim Mathieson. The radio guy said "... and he isn't afraid to use the L word". Jasper asked me if they were going to say "legend". Once I explained that the "L word" meant LOVE, he was ok with that. I said they were talking about our PM and her boyfriend. He said "WHAT? She has a job and she isn't even married??" He was actually pretty put out about it!

Apparently he thinks that when he gets married, his wife wont work, because she will need to be home to look after all the babies... like THAT isn't a job!

Ok, so lots of typing, no photos this time.. I will update from America.. if I have the time!! Otherwise the next update will be late July!!

thanks for reading


Brooke
xx

Molly's 1st Birthday and Jasper's Biopsy story..

I know I say it every time, but it has been AGES since I last posted... and it isn't like we have not been doing anything.. we have been super busy, and have lots to report, plus millions of photos to share!
Jasper is a boy scout, and they had a snake night a few weeks *maybe months* ago. He was terrified of the snakes, but said he would touch one, but not hold it... when the snake handler came around, Jasper said he would touch, and I said "just put it on his shoulder, that's touching!". He was so proud of himself!














Molly had her first play in a play gym called Wild Kidz. There is a special baby area that is gated, and the rest of the area is a free for all play area for big kids. She had a BLAST and loved it. When she was on the bouncy castle, her brother and his mate came and jumped all over to make her bounce! She looks like she is trying to escape from Jasper's bouncing, but she was having a LOT of fun!! Jasper also LOVES playing with the baby toys... thought this shot of him caught out would be another one to add to his 21st birthday collection of embarrassing photos!!













Molly has totally electric hair. It is just standing on end all the time. I brush it down, and as soon as it dries, it is straight back to standing on end. It is just part of her charm! Here is a snap of her with her hair brushed flat... she was not too happy with it!!









This one below is what happens when Molly is left to her own devices in Jasper's bedroom while I help him with his homework... tissues apparently are much better when OUT of the box! I had to grab the camera, and when I called her name, this is the guilty look I got!










Our princess is ONE!! Can you believe it?~ I can't. It still feels like yesterday that Paul was driving me to the hospital in labour telling me I was not breathing the right way... but it HAS been a year, and it has gone by super quick. Here we are at her birthday dinner. My parents came over for dinner. Molly was too tired to stay up to eat cake, but it was DELICIOUS
!








this second shot is Molly looking at the phone when her daddy called to wish her happy birthday. She had only just woken up, and was a bit confused as to where daddy was - she could hear him, but could not see him!










It is a tradition that my dad does with "wetting the baby's head". She was not sure what was going on, and unsure why she got wet hair, but the tradition continues!!






Nice sloppy kisses for Grandie through the trampoline net! mmmm delicious.







We went out for lunch with my friend Carly and her son, Liam. Carly doesn't like having her photo taken, so it is rare one here!!







Molly got to have ANOTHER birthday when daddy got home from work, just 2 days after her actual birthday.
We saved the big presents for then, and of course, Jasper HAD to help open them all!








Jasper had his sports carnival at the end of Term One. He is in blue faction. Taylor it is called. He got a 2nd place ribbon for the 70m sprint. Molly and I had a lovely afternoon in the sunshine!
The blue on his forhead was from the blue hairspray that looked awesome in the morning as a mowhawk, but after recess and the hat going on, it all went a bit pear shaped!!













Jasper just had his annual biopsy yesterday. It was a long time in coming with 3 reschedules in total, but it was the best one yet. He woke up really quickly and was eating. We were out in record time!!
As a suprise, I bought him a Mania Magazine. It is one he has wanted for ages, mainly for the boggle eye glasses that came with it! He had them on in the waiting room, then in the ward, then when he was wheeled into theatre!! Lucky they did the right operation, and did not try to fix his eyes!!









Within 30minutes of waking up, he was watching cartoons and demanding his icypole.









Driving to my folks to pick Molly up, I said "Jas, are you ok babe?" there was no answer, so I glanced back and saw this...









I think it warranted a photo (I stopped the car at a red light before snapping!) He was back at school the next day (today), and I only had to write a note to excuse him from sport. He said he wanted to do it, and was playing Octopus when I went to pick him up!! Back to normal!!

His blood counts are not so crash hot. His platelets dropped from 164 to 120. Normal range is 150 - 400. Now I know that 120 is a REALLY good number for a FA kid, but it is really low for Jasper. I think they are the lowest they have been, and it is a drop of 25%. His doctor was not too worried, but I am a natural born worrier... so I have emailed her today to get more bloods done in 3 months, rather than waiting the 6 month. I would rather know if we are starting steady decline sooner rather than later.

All in all, we have had a great start to 2011. We are off to America again in June, so it will be fantastic to see all our FAmily again, and celebrate Jasper's 8th birthday, and Paul's "21st" birthday at Camp Sunshine!!




Oh, here are my babies at Easter... 5am was NOT a good time to go egg hunting~




Brooke
xx

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