2009 The year that was....

2009 was the year...

- That we received Ellies diagnosis of Wolf Hirschhorn syndrome

- That Ellies ear operation was cancelled 3 times due to other hospitilzastions

- That Ellie started to some what enjoy food

- That Ellie learnt to roll

- That Ellie started having seizures

- That Ellie found her feet and started eating them

- That Ellie found her voice

- That Ellie got her glass eye

- That had about 10 hospital stays
My wishes for 2010...

- Continuation of good seizure control (Ellie has had no seizures for 4-5 weeks

- That Ellie continues to improve her development

- To make people more aware of Wolf hirschhorn syndrome, and in turn making strangers more accepting of people with a difference or a disability

- More time out for Luke and me, to have some better quality time together

- To reassess all of Ellies therapy, and work out what is best for her right now.

- To learn to not become so frustrated with hurdles that are put in front of me

- To live and enjoy life, as we always have

All I want to do is eat my feet

A break has been nice

December has been a quiet month for therapy with Ellie, this was partly due to some therapy services not operating this month. It was also due to some advice from another mum with a child with WHS (Thanks Anna) That sometimes a break from therapy can but just what you and your child need.... and it was. This month was relaxed and Ellie and I have had some real good quality time together, and would you beleive it she has started to do more... she is now rolling, sitting a bit better with the boppy pillow and talking heaps. So I think Ellie really did appreciate the break from therapy too.

This break isnt going to go on too long as I do feel that therapy is a vital part in moving forward with Ellies development, however in the new year I am going to reasess what therapy Ellie requires and I am also going to look into a few new ideas from discussions with other Mums who have a child with WHS. Such as chiropractor (I have been advised that this can help with low muscle tone) I also want to look into craniosacral therapy, I dont know much about this but again has been recomended by other mums of WHS kids. One other thing that I am interested in is signing for babies. As we are unaware if Ellie will be able to talk, I would like to work on other forms and ways for her to communicate.

This all sounds like my year is going to be busy, even busier than last year. But my new years resolution is to reassess all the therapy that Ellie is currently having and the therapy that I think she would benefit from, and work out what is most important for her.... I normally dont make new years resolutions, but im sure I can stick to this one.

Christmas time in our house

First of all Merry Christmas to all the followers of Ellies blog. Thank you for taking the time to read Ellies story and for providing support and encouragement.

We as a family had a great christmas day spent with family and friends, (however it was tinged with a bit of sadness as we were supposed to be in Newcastle with Lukes family) the reason we didnt go was as we are still playing around with Ellies seizure medication, we felt more comfortable being near home and Ellies doctors.  Ellie got very spoilt, and got alot of great gifts, especially ones to help her, such as a large rubber mat to practice her rolling on, some therapy toys, and a small pool to splash around in.

Ellie also got the lovely outfit above from my younger brother, So we couldnt resist making her "Santas little helper" for the day.

An update on Ellies eye: Ellies eye is doing well, we have finally taken the patch of permanently, and YES I am now used to the glass eye... However we still need to be careful as it can come out quite easily, like this morning when I was giving Ellie a bottle, and for 1 minute I was looking at her thinking, she looks diferent.... it was then that I realised that her glass eye had fallen out.... after a quick freak out, we found it, under her tumble form chair that I feed her in... No idea how it got there, but we were quick to put it back in.

Once again, thank you to all the followers of Ellies story, and from our family to yours, We hope you had a wonderful christmas.

And then there were TWO eyes

The moment finally arrived where Ellie had her first glass eye put in. I had mixed emotions leading up to this day, as I had many thoughts going through my mind.... Will I like how Ellie looks? What if I dont? etc... I have to admit I was very very impressed with the work that the occularist did to match the glass eye to Ellies eye colour of her left eye. He did an amazing job.

If I was to be honest, when I first saw Ellie with the glass eye in, I was a bit taken back.

This may be bard for some of you to understand.... but I really, really did get used to Ellie only having 1 eye, that was Ellie to me. So to see her with a glass eye, was and still is a bit strange. Its not that I dont like it, I do, but to me she now looks different, I just need to get used to it. For those that read my last post, when I talked about how people stare at Ellie and make comments.... I also wonder how will this change how they look and what they say? Will they make more comments?

I think the hard part is that the glass eye is about half the size of her other eye, as this is where we have to start, you cannot put a glass eye in straight away that is the same size as her left eye. It is a gradual process. As Ellie grows she will get a bigger one, they are planning to put a larger one in, in about 6 months.

As they say slow and steady wins the race.... Ellie has a long race ahead of her, But I am sure she will win

Am I too sensitive???

Sometimes I ask myself this question...

I know that having a child that looks a bit different and only has one eye is always going to attract questions and looks. But what offends me is the way that people go about it. A few weeks ago Ellie and I were in the supermarket when I overheard a 30yo guy say to his partner, "Look, Look that baby only has 1 eye" If you know me well you would know I dont mind people glancing at Ellie, as it is hard not too, but this disgusted me. Over the last year I have learnt to put these people in their place, to this young guy I proceeded to tell him, that what he just did was so disgustingly rude, to which he appologised. I said his appology was not accepted, "Just dont do it in the first place"

Today we had another outing where for 30 minutes while I fed Ellie in the pram, two ladies kept staring and pointing at Ellie and (not in a way where they were saying she was cute) it was in a rude way. To these ladies I simply said "is there any reason why you have to stare at Ellie and I for 30 minutes, it is not nice"

On both these occasions I walk away feeling like the bad guy, as I am the one that has said something.  But at what point when someone looks (stares) or says something out of line about Ellie am I supposed to stand up for her.... this is why I ask myself, "AM I THE SENSITIVE ONE"

I have also started to ignore complete strangers when they feel the need to ask me over and over and over, "what happened to her eye" "what is wrong with her eye" "why is she so little for her age" I think to myself I would never ever ask a complete stranger these questions, so what gives these people the right to think they can be intrusive into my life.... again, I wonder, "AM I TOO SENSITIVE???"

Eye not so far away now...

Today Ellie had a busy day, first we had a appointment at the neurologist, who was VERY happy with how Ellie appeared - Happy, talking, alert etc, this was something she wasnt on the previous medication. So fingers crossed this med is a keeper. We will see the neurologist again in 6 weeks to see how she is going again.

We also had physio and speech therapy at home today. Ellie is definately getting stronger in her sitting in the bumbo, she even plays with a rattle whilst in it. We also ordered Ellie some leg and arm splints to help her with her weight bearing exercises.

With the speech therapist, we discussed trying Ellie on a few normal bottles and teats, as I would eventually like her to feed on this rather than the medela special needs feeder, so Deidre is going to get back to me about which teats are soft rather than hard, as this will be easier for Ellie to suck from.

The most exciting part of our day was our appointment with the occularist, (this is the man that makes glass eyes) today just by looking at Ellies eye, he painted what will be her new right eye. This was so interesting to watch, and the fact that he does it all by hand, and makes it look so real... it was amazing!! At this stage Ellie still has just a clear glass eye in, with a patch over it, till she gets used to it.

Next Tuesday we go back again to see him, and I think this is when we get her new eye.

Photos after Ellies Eye expander has been removed

Here are some photos of after Ellies surgery today. Today they removed the eye expander and took a mould of her newly created socket. What you cant see in the photos is that behind the patch Ellies right eye socket is actually open,  this is a good sign, and hopefully means that it will open quite well once the prosthetic eye goes in.

Ellie did really well after the anaesthetic, and was very quickly back to herself. Tomorrow morning we have a appointment with the man that will make her prosthetic eye, he will be fitting her first eye tomorrow. To start with the eye will be white, but we are going to discuss with him tomorrow the cost involved and how long it takes to get a eye colour matched to her left eye, as I dont know how I will deal with just a white eye, as this may look a bit weird, especially if her eye lid opens straight away...

I will post some photos in the next few days of her new right eye.

With Dad before surgery

With Mum afterwards

Hiding behind Ted-E-Bear

Hopsital visits have come routine.... some bad some good

Ellie was again in hospital all of last week. We ended up there Monday morning as her seizures were increasing and getting worse, and under her neurologists instructions we gave her a increase med dose, but Ellie got worse.

Once we were at hospital, they also found that Ellies right eye socket, (where a tissue expander was inserted 3 weeks ago) was quite badly infected. This meant 1 week on IV antibiotics, to try and get rid of this, if this didnt work then they were going to have to remove the expander. We were not to keen on this as ideally we wanted to keep it in till the 7 December, which is tomorrow, when it was scheduled to be removed.

Thank Goodness..!! The antibiotics worked. So the tissue expander is still in, and we are due to be at the Royal Childrens 7.15am tomorrow morning, where they will remove the expander and they will also take a mould of her newly created eye socket, with this mould they will create her first glass eye. So it wont be long now before we are posting photos of Ellie with a right eye.  This day has been a long time coming, and both Luke and I are very excited about this. I have gotten so used to Ellie with only 1 eye, that I do think it may take a bit to get used to her with 2. Cant wait for that day!

So last weeks visit to hospital not so good.... But tomorrows visit is exciting as it is a step closer to Ellie having 2 BEAUTIFUL Eyes....