Thursday, January 7, 2010
Wednesday, January 6, 2010
Another day another post!
A few weeks ago I took Ashlee to the doctors as she had been run down and generally unwell for quite a long time. Doctor did what doctors do and than decided she needed a blood test - he was thinking maybe Glandular Fever.........so off went. A few days later doctors surgery called to say the results were back and he would like to see Ashlee. Back to the doctors to find that Ashlee did not in fact have glandular fever but her iron levels were very high. There is a bit that goes into these tests so here's what is normal:
Serum Ferritin: 20 - 200 ng/ml
Transferrin Saturation: 20 - 30%
Ashlee's results:
Serum Ferritin: 314 ng/ml
Transferrin Saturation: 58% - this is the big indictor
So after a discussion about her diet....no, does not eat huge amounts of red meat etc.....and wheather she takes supplements......nope......we end up back getting blood tests. This time she they are testing for Haemochromatosis.
Christmas Eve I get a phone call from our doctor, yep she has it. Today we went back in for a discussion about treatment. We have been referred to a specialist but have also been told that the only treatment for Haemochromatosis is giving blood or at Ashlee's age just simply 'blood letting' since she is to young to give blood. Just a little fact for you all - as many as 1 in 300 people have it! It is also genetic and I have since found out that my Dad has it and I think it is in Ashlee's fathers side too. Today I had a blood test. Apparently because Ashlee has it I am at least a carrier the test is to see if I have it or not. Down the track all my other children will have to be tested as well - yippee!
So just more things to add to my plate. I also had an appointment today for the results of my cervix biopsy - see I must have done something terrible in my past life! For now we wait and repeat the biopsy in 6 months time - some good news I guess.
I'll leave it at that and leave you with some sewing that I completed today......
Firstly, a car seat canopy for my SIL Melissa and gorgeous little nephew Caleb. Now I completely forgot to take a picture when they came over earlier and picked it up, I'll have to get one later on. Until then think this but in these colours....
Then I 'whipped up' (lol!) a couple of burp cloths and a dribble bib complete with a snap
And this was sitting around waiting to be finished so I thought I would do it while I was on a roll!
One T-shirt - formally Ashlee's - refashioned into a T-shirt for Zachary!
He loves it and is currently wearing it while he is sleeping in his new bed!
Just for fun! This girl makes me laugh when I need it most!
Tuesday, January 5, 2010
A Photo a Day - January 5, 2010
(Excuse the mess. The new beds are actually the first thing I have brought for thier new room. Plenty more decorating to come!)
December 14th 2009
(FIRSTLY - is anyone else having trouble with Blogger? My post is all stuffed up and it's done
all its own editing - fonts and font size etc!)
This was the day Zachary we went in for his first dose of Botox. We headed up to Sydney the afternoon before and spent the night at Ronald McDonald House Randwick. Met some lovely people and heard some amazing and some sad stories. I tell you staying there really makes appreciate each day more, your children and what you have - or don't have as the case may be.
8am and Zach was admitted. Being one of the youngest he was 2nd on the list. Zach freaked out as we wheeled him in (Anna had to be held back kicking and screaming by Nanny - poor baby girl). His cries got slower and slower as he drifted off to sleep. 40 minutes later he was back and he was upset but he soon settled down and then drank a whole cup of juice and 2 sandwiches. An hour later all seemed well and we were sent home. We had decided to spend the night at RMHagain and I'm just so glad that we did. Within 30 minutes of being back there Zach was getting very lethargic and also feeling very warm. We ended up taking his temperature it found it to be 38c. I called the ward and was advised to take him back to Children's Emergency, which we did. A small walk up to the hospital only to find his temperature was now 39.9c! It took 4 hours but we managed to get it down to 37.5c and another hour later it was still the same so we were sent on our way. By morning he was still a little warm but ok. It was scary to say the least but I was glad to be heading home.
That's when Dr Google came into play. After researching his symptoms I came up withMalignant Hyperthermia and guess what, its in our family. My Uncle (my Mum's
brother) flat lined on the table during an operation. So it is advised that we treat him like
he has it until we get some DNA testing done. More things he doesn't need.
So that was our first experience with Botox. Even though it wasn't the Botox that cause
the problem. We head back to Sydney on the 14th for a follow up visit and some
casting - I don't know how he will take that. Other than that Zachary is doing well.
He is talking incredibly well now and is such a funny little boy. TheraTogs are working
wonders and most days he actually asks to wear them and his AFO's! I guess he can see
the benefits.
In other news.....
Zachary and Anna got toddler beds for Christmas. My brother put them together for me
recently they have just been sitting in my room because their new mattresses hadn't
arrived. Today they did! I quickly got rid of the cots and put their beds in their room.
They were so excited! I also got them new quilts and junior pillows. Today's task - finish
their quilt covers and pillowcases. That I achieved!
One new Thomas Pillowcase - fabric was an ebay purchase
One new Thomas bed and Thomas quilt cover! (Panel from Spotlight and backing is a queen
sized white sheet that I got for $7 and did both covers and pillowcase!)
One new Dora pillowcase - another ebay purchase
Lastly is the new Dora bed (minus the stickers. I'll bed putting them on when no one is
watching!) and Dora quilt cover. Again the panel is from Spotlight.
My photo for today is coming - I don't think these count. Lol!
Monday, January 4, 2010
Alive and well - really
I have so much to blog about. So much has gone on in the last weeks that I've decided to split it up in to separate posts, that will be the easiest on me I think....see keep your eyes peeled for some actual blogging in the next few days!
Other things I am doing at the moment:
I have decided to do a photo a day. Sometimes things get so hectic around here that I forget the camera is even there so I'm making a point to take at least one photo everyday and post it on my blog. I have already been doing this from January 1st so I must update my blog with the pics
I'm actually sewing, crafting & scrapping again! I have a few things in progress at the moment so that is to come also.
Lastly I'm working on a blog layout. Something new and fun...check back soon.
Hope you all had a wonderful New Years!
Sunday, January 3, 2010
Saturday, January 2, 2010
Friday, January 1, 2010
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