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

Ye Hah

Cara’s almost one.  The first year has gone so quickly.  It was really interesting to re-read one of the posts we made on Harry’s first year (click here) and got us thinking about Cara.  So here’s a quick summary of her likes, dislikes and progress.

  • Cara is an absolute joy.  She loves smiling and giggling and giving cuddles.  Whenever you look at her she smiles back.  Her favorite game is peek-a-boo which she finds hilarious.
  • Like Harry just before his first birthday Cara’s not walking yet, but not far away.  She’ll stand up by herself for seconds at a time before sitting back down again.
  • Her favourite book is a sparkly book with bugs…Plus any book little book.  She loves reading and is always pulling books off the shelves.
  • She also loves bathrooms! If you ever loose her for a minute, you can be sure she’s crawled into the bathroom to sit on the cool tiles or demand a bath by banging on the bathtub.  She’s been taking swimming lessons too and just generally has a big smile on her face whenever she’s splashing water.
  • She’s a pretty constant talker.  Not too many words just yet, but lots of interesting sounds.  She does love “mum, mum, mum, mum…”  (No “dad, dad, dads…” yet) and understands how to use it to effect.  She makes a recognisable “buh” sound in response to books.  And finally she seems to be quite fond of making an “feh” sound – f this, f that.
  • She was weaned at 4.5 months and happily drinks from a bottle she holds by herself, if she feels like it.
  • She got her first tooth at 9 months, and got another 5 one week at the time following that.  Since then she is stuck with 6 teeth (3 on the top and 3 on the bottome for a month or two now).  She is very cute when she gives her big toothy grin.
  • Cara plays really well by herself.  She loves exploring her toyboxes or whatever is lying around.  She has a habit of standing over the toy boxes and systematically tossing everything out, with a cheeky smile on her face.  She also loves playing with Harry’s toys and is particularly fond of his space ship and Woody.
  • Having mentioned Harry, Cara idolises him.  They play quite well together, and as you can see in the photo, she keeps Harry in line.  They love cuddling each other.
  • Sleep and Cara has been challenging, but is getting more consistant.  One thing you can certainly say is that Cara loves her dummy.  She has only had one dummy, which can only be bought in the States, which means we have spent hours on the floor in the middle of the night searching for said dummy.  She now sleeps, well… OK.  Goes to bed around 6-7pm and wakes at least once in the middle of the night for a feed before getting up around 5-7am.  Hopefully we’ll get rid of that middle of the night feed very soon.
  • She enjoys music – and loves banging on the keyboards we have.
  • Likes getting outdoors in our backyard, and will crawl all over the yard.

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???????

Over the years quite a few people have posted comments asking about whether neonatal hemochromatosis NH is related to hereditary hemochromatosis.  This article by Peter Whitington explains hereditary hemochromatosis and how NH is different.

Cara’s now out of the special care nursery and, fingers crossed, will be home tomorrow. One or two outstanding tests could delay us by a day. We finally got a family snap. Someone though, wasn’t smiling for the camera until she was fed!

Cara’s graduated from intensive care back into special care. Everything looks like it’s progressing as it should, and we’re hopeful things are still on track to have her home soon.

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