Christmas 2013

All that time, wrapping, thought and stress... it's over in the blink of an eye!

Christmas Eve marked the 14th wedding anniversary for Paul and I. We had a delicious "traditional" Christmas dinner - roast turkey and veg, followed by Christmas pudding!

Christmas Day had Jasper awake super early - but he was quiet as a church mouse til his sister woke at 6.30am. Then it was ON!
They woke their brother up, and with all of us present, we got to presents!!!

Jasper scored 2 games he wanted on the xBox, and a new skateboard among other things.
Molly got just what she wanted, a suitcase, pixie dust and a make up table!

Breakfast was bacon and eggs... not too extravagant as lunch is always a mammoth feast!

We headed down to my parents for lunch and the afternoon. It was a beautiful mild day, just perfect for Christmas Day - especially after the 40C day we had here last year!!!

My mum was insistent we have a family photo taken... here we are!

 and the kids.. good looking bunch, aren't they?

 Jasper opening his tee with Poppie - he was desperate for one, so he could keep practising his tee ball skills over the Xmas break!

 Brent with some hot red lips..

 Lip sharing to Molly.. kisses all round!

 Red lipped Molly with her Poppie

 My beautiful mum and handsome son

 The man and his boys!

 The mum and her babes

 Molly and her daddy having some pool time

 splashing around (and blinking when she shouldn't have!)

 oh, hello. there I am.

 Cricket fun for the boys

 time for a family swim!

 Molly getting warm with her biggest brother and daddy.

 goggle faced cutie!

 the afternoon saw us all just relaxing at home.. Molly with her new makeup...

 and the boys xBoxing away..

Boxing Day was more of the realxing and doing nothing... and now we are back to standard days and life as usual!

2014 will be another year of no medical dramas, all smooth sailing and lots of laughter - I hope!

Thanks for reading.

Brooke
xoxo

November 2013 blood counts

It seems I only remember to update the blog when Jasper has blood counts! Oops..
Well, today was the day for quarterly bloods.
All are ok,with not much change.

	22-Nov-13
White Cells (4.50 - 14.50)	4
Haemoglobin (115 - 155)	128
Platelets (150 - 400)	127
Red Cells (4.00 - 6.00)	3.72
MCV (75 - 92)	105
Neutrophils (1.50 - 8.00)	1.34
Lymphocytes (1.50 - 7.00)	2.04
Cholesterol (1.2 - 4.5)	6

Ok, so the red means it's a count that is out of normal range... the cholesterol should be red too.. need to fix my auto formatting!

We are being referred for the cholesterol count, to gastroenterology. Also, we are back to being on the referral list for dermatology, and will get a liver ultrasound in 3 months when we go back for more blood work.

We didn't see our usual doctor, but I think that was a good thing this time... the doctor we saw was SO thorough, and made sure all the referrals were in place and notes clearly written, so I didn't have to go through everything again next time (I am sure I will have to anyway, but the fact that she made such an awesome effort really made me happy!).

In other news, Molly has turned 10... well, she thinks she is 10, and she wants to be 10! She isn't happy she has to wait and be 4, then 5 etc... she wants to be 10 NOW.

Paul and I have made the decision to move Jasper's school.. we believe that the public system will be better suited to him and his needs. Private school does not provide the additional assistance that he may need, and with Molly starting school next year, it is the perfect time to move.

We are amazed at how excited he is to move. I was expecting a LOT of resistance, but he is super keen on it - might have something to do with the fact that this school does not believe in homework (!).. they might now, but this momma does!

Here's a couple of photos of the kiddies...

My handsome lad.

 Loving each other, instead of fighting!! (there was icecream on offer!)

 The most precious of moments...

Well, school is almost finished for the year (Hooray!), then we get ready for Christmas!!

I am so looking forward to the holidays. I have promised the kids I won't work too much, and hang out having some fun more than I work (!).

Thanks for reading,

I will TRY to update again soon..

Brooke

September Blood Counts

I keep forgetting to update here... usually I do things through FaceBook..
So, Jasper had bloods done again just the other day. We didn't need to see the doctors this time, that will happen next time.
I only get height and weight when we see the docs, so for today, we just have blood numbers.

• in brackets is the "normal" range.
• the first number is what he was 3 months ago
• the second number is from yesterday.

White Cells (4.5-14.5)         4.50       4.70

Haemoglobin (115-155)      131          124
Platelets (150-400)              110           119
Red Cells (4.00-6.00)         3.72          3.47
MCV (75-92)                           105           104
Neutrophils (1.5 - 8.0)        1.24          1.98

So, all in all, there is no change to speak of. No change is a good thing! It means no significant drop.

Jasper also has another splint to wear at night... he has flat refused so far, but the surgeon from his  thumb surgery is not happy that the thumb appears to be slipping back. The splint is for 6 months to see how it goes.. 

There is nothing else (medically) to report!

Thanks for reading

Brooke

July 2013 Blood Counts

We recently had birthdays birthdays birthdays around here... Paul was on Wednesday last week, and Jasper turned 10 on Friday...
That's right, T.E.N!!!!!!!!!!!!!

I will do another post on that soon, but today is about recent blood counts...

We had bloods done yesterday - 1 July. The doctors are all happy with him. Everything is kind of sitting where it has been.

It would be nice to see him crack 25kg, but he is at 24.4kg... His height is 129.0cm.
The only real concern is his cholesterol which is 5.9. That is pretty high. 3 months ago, at biopsy time, Jasper was fasting and his cholesterol was 6.3. The doctors aren't sure what the go is, so I have an email in to one of FA doctors in America to see if she can assist us!

Here are the blood counts:

• in brackets is the "normal" range.
• the first number is what he was 3 months ago
• the second number is from yesterday.

White Cells (4.5-14.5)         3.90        4.50
Haemoglobin (115-155)       135         131
Platelets (150-400)               112         110
Red Cells (4.00-6.00)          3.71         3.72
MCV (75-92)                      103          105
Neutrophils (1.5 - 8.0)          0.94         1.24

So not much moved, it was all pretty consistent.

We saw a different doctor this time, and it is always interesting to see their take on things.. she is more transplant focused, but we are no where near that stage!!

As FA kids get older, there are more complications and considerations to take in. It is a  true balancing act, and the time to act is not clear... I don't think it ever will be.

For now, we are grateful to have our boy reach "double digits" with no real complications. He is a healthy child, with energy on top of energy.
He drives us crazy, we love him more than anything.

thanks for reading

Brooke

The Pins Come Out

Today was the day we have been waiting for... Jasper's pins were coming out of his thumb!

The dream was for the pins to come out, the splint to come off, and business to resume as usual...
Well, the pins came out....

Here is a little video of the procedure.. It was AMAZING! There is no anaesthetic, no nothing, just some big arse pliers and some wiggling.
The doctor was brilliant. He is Dr Pepsi Max... he always (and I mean ALWAYS) has a can with him... no matter the time or the day!

Jasper was a little freaked out, but I knew that if I didn't video it, he would regret it later. He has already watched it!!

So, the pins are out, Physiotherapy want to see us in 2 weeks... the splint comes off then.

We can take all plasters off the thumb in a day or so, and leave them off if the holes in the end are healed and look good.

After 2 weeks, the splint is off, all coverings are long gone, but Jasper is still banned from all "balls and wheels" for 6 extra weeks - so 8 weeks from today.

Goodbye football season... Jasper is not too happy, but there is always next year!!!

Here are some more photos of the pin coming out....

They were pretty long!!!
Hope it didn't gross you out too much!!

Thanks for reading.

Brooke

Thumb Update

It has been 2 weeks since Jasper's surgery. He is going great!!
There is no pain, and he is back to being... well, Jasper!!
It is a bit sad that he can't go to school swimming that is on for the next 2 weeks, he is missing his Scout's Camp this weekend, and still out of action with his football, but it is not forever, and hopefully the "new" thumb will make life more productive for him!

Just a reminder.. Here is the before photo:

 Just a little crooked, and he didn't really use it for much.

Here is a photo from about 1 1/2 weeks ago, when we had to change the dressing. Notice the 2 hooks out the end? It was so swollen. Poor love.

Here is his plastic splint, all signed by his friends!

 Today at the hospital, here is what his thumb looks like now. It is SO straight!!!
The wires come out in 2 weeks, so that will be the telling tale - will it hold it's shape!!
I will update to let you know...

Thanks for reading

Brooke

Jasper's Thumb Surgery

Jasper had his long awaited thumb surgery on Tuesday (May 14). His thumb looked like this...

and when he complained about it feeling tight, we went back to the doctors and they said they would operate to loosen it, and try to straighten it. Jasper wanted it chopped off at the joint, but they declined!

We didn't have to get to the hospital until 11am,as he was on the afternoon schedule. That meant no eating after 7am, and no only clear fluids between 7am and 11am. He had a HUGE breakfast, and nothing else to eat or drink after 6.45am.
I was in the same boat - I can't eat if he isn't allowed to... just doesn't seem fair.

They didn't seem to understand my need for Jasper to have a blood count done prior to surgery, and when they finally GOT IT, the phlembotomist (vampire), didn't get enough blood to get a good count done. GRRRR. All of this pushed us further down the surgery list, and so instead of going in at 2.15pm, it was 4.45pm. The surgeon said it should take about 30 minutes, but it was about 6.30pm before I  saw him.

Here are some pre-surgery photos.
Initially, we were in a group room with other "day surgery" kids waiting for surgery... slowly they went in one by one, until we were the last ones left.
Then they started coming back, all post surgery, so they asked Jasper and I to move to a small treatment room... it was better, a bed, quiet, and surgical gloves!!! We played a bit!!

 Then in the pre-op bay, we had to wait for the surgeons and anesthetics consultant. Jasper found a trike! In between complaining about hunger, he had a zoom around!

Post surgery was a bit different from biopsy... he wouldn't wake up!! One of the nurses in the post-op bay had a cold wash cloth and was wiping it over his face talking to him REALLY loud! I didn't like it. There was another little girl they were trying to bring around by tickling her with a tissue! Meanie.

He finally woke up enough to drink some juice, hold it down, and open his eyes, so they let us go home. It was almost 8.30pm.

He came home with no pain relief, just the words of "paracetamol", as he can't have ibuprofen.

Wednesday saw Jasper at my bedside saying "it hurts really bad" at 3.30am. I gave him a dose of paracetamol and sent him back to bed. Then he was at me again at 6.30am. I gave him more at 7.30am.

The day saw a LOT of this:

 which made the following happen:

Wednesday, 3.30pm saw me dropping Molly at my parents again... (she had slept there Tuesday night). Jasper and I headed to the hospital as he was SCREAMING in pain, saying it was 8/10.

We were fast tracked through emergency, and they cut the bandages off, took the cast off, and this was the best photo I could get:

 Jasper demanded I do NOT take a photo, as he was freaking out. I am queasy as anything, but had a good look once they took all the coverings off... It looked AMAZING! There are 2 pins sticking out the top of his thumb, and the stitches now go from his existing scar all the way up his thumb! Jasper is now demanding that I take a photo of it, so I will as soon as I can!

The doctor said we should stay the night to get the pain under control, and we got some hard core meds into Jasper.

Before Oxycodone:

 During Oxycodone:

 After Oxycodone: (yes, I took in school work... no change of clothes, or phone charger, but I took maths!!)

 Here he is getting the old cast removed and a new plastic splint-like cast fitted... Nick, the physio said I was free to take photos, as long as I didn't get him in them!

 This set up worked much better.. it doesn't put as much pressure on his thumb, and we can remove it to air his arm out when it starts to get stinky!

 At home, with a very tired momma!

 It doesn't take long to get back to normal around here... tormenting his sister on the swing...

 swinging (albeit with one arm)

Jasper seems to be ok once the pain meds kick in... but he is watching the clock to see when his next dose is. I am only giving him a half dose of the oxycodone and seeing how he goes with that. The paracetamol is 6am, 12 noon and 6pm.

We have a follow up with the surgical team on Wednesday, so will know more then!

Thanks for reading,

Brooke