Sorry for lack oof blog updates of late... week update

Ellie is finally 100% better!! Thank goodness after 3 lots of antibiotics

This week we had 2 really important appointments for Ellie.

1 was with Aurora which is a school for hearing impaired and deaf children. They have been seeing us for a few months now at home, through their early intervention program. The reason I have them involved with Ellie is she does have a hearing impairment and we are also not sure if Ellie will be verbal, so I am keen to learn sign language too. The purpose of our meeting with them was to work out some goals for the next 6-12 months and what we want to get out of our visits with them.

The second appointment was at CPEC (The cerebal palsy education centre) They run a family centred, early intervention program which applies the principles of conductive education. It is offered to children between the ages of 1-6yo with physical and/or multiple disabilities. The programs offered address the following developmental areas: communication, physical, sensory, cognitive, social and emotional. I sat through a whole morning session which ran from 9:30 - 12:30. I have to admit I was impressed. The class I sat in had 5 children with their parents, plus 1 teacher and 5 helpers. For the parents it is a very hands on class for them, which I like as it gives me the opportunity to learn more about how to help Ellie and also the confidence to help her. In the class that I saw, they spent the first part communication with their communication books, they then did some strength building work, with some kids working on push ups, walking, getting from one position to another. They also do alot of songs, which get the kids involved.

I dont know if I have given the greatest explanation of this class, but I am still trying to completely understand it myself. All I know is that from what I saw, I think Ellie will benefit greatly from this type of therapy. I need to get Ellies name on a waiting list for this, I have been advised that she may not get in next year but possible the year after. Fingers crossed!!!

Alright thats enough for now, Ellie is at my parents for the weekend, we dropped her of yesterday morning... Going to RELAX!!!

Go away winter... cant wait for summer!!

Yep I am counting the days still summer!!! Ellie is still not 100%, it is now been 4 weeks that she has been sick. The other day after another morning of coughing and vomiting, I was at my wits end....

Decided to ring my peadiatrician, however he was on holidays.... another Pead at the Royal Childrens Hospital spoke to me, and I filled him in on the last 4 weeks and what had been going on with Ellie, such as the chesty cough, a wheeze here and there, lots and lots of coughing and in turn heaps of vomiting. Amongst all of this Ellie has also had 3 courses of antibiotics over the last 4-6 weeks. He offered to see Ellie last night at 7pm at The RCH. Not an ideal time... but we took what we were given.

He assessed her, he doesnt think it is asthma, he doesnt think it is bronchilitis, nor does he believe she is aspirating her milk/food. He couldnt really give us a clear answer as to what is causing this. However after a very thorough checkout, a suction of the nose to get mucus, and having blood taken we were sent home with some new antibiotics for Ellie. He will be checking again for whooping cough and another virus, (I think it started with 'P') Results will be back end of this week/early next week.

I am hoping these antibiotics do the trick, and that nothing nasty comes up from the other tests.

On a more positive note, Ellie is doing really well with her sitting at the moment. She still needs to be set up in the right postion by us, but she is maintaining the sitting position much longer. A few weeks ago you would sit Ellie down and she would just throw herself back, and wouldnt have a bar or sitting. However Ellies physio Trish gave me a great idea. Ellie loves vibrating toys, and she has what is called a vibrating snake. I have been wraping this around Ellies body as she sits and she holds onto it while it vibrates, this has given her a bit more motivation to sit for longer..... Yay!!

We are also off to Ellies ocularist this afternoon, he is a lovely french man who makes Ellies glass eye. If you remember Ellie was in hospital a few weeks or so ago and they took in impression of her eye socket. With this Patrick will make a new glass eye. We are really hopefull that it is somewhat bigger than the last, even if only by a few millimeters. Watch this space for photos!!

What is normal?

I hate the word 'normal'

I hate the word 'normal development'

I know parents with 'neurotypical children' (this is the PC way of saying 'normal child') like to know if there babies or children are normal, and if they are developing in the normal pattern. But what is actually normal and who decides what is?

I know Ellie doesnt fit into the normal development category, and according to society in relation to her development is not a 'perfectly normal child'.

These thoughts dont creep into my mind too often.

If we are at home alone, or we are out with friends and not too many kids, these thoughts dont enter my mind really at all....

Its when there are more kids around, and I see what they can do, and how they do it with such ease. Its when babies or children younger then Ellie pass her in their development.

I know this is something that is going to continue happening for the rest of Ellies life. I know I said I HATE the word 'normal'

But.... how sometimes, oh just sometimes I wish Ellie was normal

Winter means cold weather... which means bad times for Ellie

Ellie unfortunately is still sick.. Which suprised me as yesterday she really looked like she was turning a corner. That was until 4am this morning.... when we heard Ellie struggling to catch her breath on the monitor and it sounded like she was going to cough a lung up. (pardon the pun)

She didnt get much sleep between 4am-7:30am as she was just coughing way too much. After breakfast and milk it was time for Ellies sleep, however, as the coughing seemed to continue, Ellie couldnt control it and vomitted violently about 4 times.

Right... back to the doctors for 4th time in 1 1/2 weeks. The doctor put Ellie on a oxygen/asthma pump to see if this loosened up her chest or stop the wheezing. It didnt..... so she sent us off for a chest x-ray to rull out pneumonia. Thank goodness the chest x-ray came back all clear.

As this came back clear the doctor took a swab to check for whooping cough, it will take a couple of days to get the results back. At this stage the doc thinks it is either prolonged bronchilitis or whooping cough.

She is now on another course of antibiotics... Hoping the kick this bug!!

More Physio...

Today Ellie had her first private therapy session... It was fun. It was mostly spent with the physio getting to know Ellie and where she is at developmentally, and what we have been working on with Trish, our physio that comes to the house. Ellie really seemed to enjoy it, however she did spend most of the session, moving, wriggling and laughing... Penny the physio said that Ellie had 'cheek' and 'spark'

This made me smile!!!

My plan is to see the private physiotherapist once every 3-4 weeks and the same with Trish, who comes to the house. This wasy Ellie gets 2 therapy sessions in a month, plus we do Gymbaroo once a week.

Tomorrow we have an appointment regarding Ellies orthotics, they are still a month or so off. But looking forward to getting them as well as Ellies new standing frame!!