Harry McKenzie


 

Over 6 years and 100 posts ago we discovered Ellen died of Neonatal Hemochromatosis and we embarked on a journey – with the help of Dr Whitington’s new treatment – to try to have our own family.

It’s taken a long while. There are still lots of days when we catch our breaths meeting or seeing a child about the age Ellen would be. We still miss her a lot, but the ache has gone.

There is so much joy. Ellen gave us the chance to be parents to Harry and Cara and it’s been wonderful. Harry and Cara are both happy and healthy.

The treatment is now being used a lot more widely, there is a lot more information out there, and there are more support networks. In the last month a group has started up at:
http://health.groups.yahoo.com/group/Neonatal_Hemochromatosis
There are already about 40 members and it’s very active. People are sharing their experiences and helping others by doing so. That was always the purpose of this blog. Hopefully, in some small way, we’ve been able to help others by sharing our story.

So we’ve come to the end of the last post on this blog. We’ve no plans to take it down, and feel free to email us if you have any questions or want to leave comments. Thank you so much to the people who’ve contacted us over the years, sharing your experiences and providing your support has been invaluable in our journey. We wish you all the best on yours.

Lots of love Trent and Mary

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Cara at Home

One of our “recent” blogs had Cara coming home from hospital. Well as you can see she is well and truely home and almost one!!!! After a bit of shaky start she is now doing wonderfully.

The first three months of her life Cara did not want to be here. She was miserable, did not sleep and did not put on weight. There was nothing specifically wrong, just a prognosis of – “failure to thrive”. Not a pleasant phrase to see on your daughter’s medical charts. But once she learnt to smile, boy did she work it. She is now one of the smiliest, happy, energetic babies I have had a pleasure of seeing.

She is a pure JOY – so full of life. We are so grateful she is here.
While not taking away from Ellen, she has helped heal so many hurts that the death of Ellen brought us. She makes our family whole.

We are some of the lucky ones……
Thank you to everyone who shares our journey with us

Harry’s Birthday

Harry Turned Four Yesterday! I can’t believe how much he has grown. We celebrated his day with a small family party and a “H”cake. He was so happy, he sang and danced his way through the morning in his very cool Batman suit.

While we would be lying if we said that (as with all children), life with Harry has always been easy, yesterday was a wonderful day – a celebration of his life. Yesterday he was heaven sent and absolutely delightful.

He woke up singing he was so excited. Morning cuddles were followed by some present opening, and then some more cuddles for his beautiful sister who was now awake.

A great day was had by all of us. Who would have thought???????

Finally got around to updating a few photos on the flickr site. This one was taken this morning as Harry and Mum set off on the 200m walk to Harry’s new day care – he loves it!

Harry turned 2 a couple of weeks ago, so it’s high time a couple of photos made it onto the internet of the occasion. He had a great time!


Could not resist posting this photo!

An eventful week or so for the family.  Pa and Grandma came over to celebrate Pa’s birthday (cake is a Harry favourite).  It was also Rebecca’s christening (Harry’s cousin) last week.

The photos above are posted using Picasa.  Thought I’d try the Google Picasa option to see how it works.  It’s easier to upload photos but I think Flickr has a better feel and can link with this blog better.  Anyway, enough of the techno details, you want more videos.

Harry’s very fond of the Wiggles. The problem is that Mum and Dad have had enough. The three Wiggles DVDs that we have have been watched to death. Mary’s good idea was to buy the Mary Poppin’s DVD for a change. Such decisions can have unintended consequences

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