Paediatrician appointment update

Today I had an appointment with Ellies paediatrician.. Basically I wanted to discuss Ellies blood test results from 4 weeks ago which showed she had problems with her thyroid. As I wanted to know if this was the possible cause of Ellies weight loss or lack of weigh gain.

Here is my explanation of her blood test results, (I hope I dont confuse you)

In short everyone has a pituitary gland. The pituitary gland secrets hormones, one of which is thyroid-stimulating hormone. Thyroid stimulating hormone promotes growth of the thyroid gland and stimulates it to produce more hormones.

Ellies blood test showed that her pituitary gland is producing high levels of thyroid stimulating hormone. A high level of TSH often means an underactive thyroid gland that is not responding adequately to the stimulation of TSH due to some type of thyroid disfunction.

This is not the way that I interpreted the results 4 weeks ago. I assumed that Ellies high levels meant a over-active thyroid, which in turn can cause weight loss. I was wrong... it could mean an underactive thyroid.

Today we had another blood test, to see if there are any changes.

Basically, in short... If Ellies pituitary gland keeps producing high levels of TSH she will need to be on medication to regulate this, and she would be on the medicine for life.

On a positive note Ellie and I had a great day out today, considering we were out for appointments for most of the day.. she is so happy at the moment, smiles, laughs, is cheeky... she is just beautiful....
But then again we might be biased   : )

A bit of a break... and also supporting a good cause

This weekend Luke and I had a weekend away, while Ellie stayed with my parents. It was 3 nights away, which meant 3 sleep ins. YIPPEE!!!

The weekend away resulted from wanting to support a charity through some new people we have met recently. The charity is called 'Charity2Charity'

Charity2Charity help families by raising funds to assist with the shortfall between government funding and actual costs for specialised equipment, funds raised also go to providing families in desperate need some much deserved respite. They also work on raising awareness in the comunity of the associated costs and challenges of raising a child with a disability.

What an amazing weekend we had, we had another couple of friends come along and support Charity2Charity. The 2 boys played golf in some dreadful weather on an amazing course. The night was filled with great food, good company, auctions, and of course a few drinks... all of the proceeds going to a great cause.

Charity2Charity have decided to assist in purchasing Ellie a much needed standing frame. We have had one on loan for about 4 weeks now, but unfortunately we had to give this back last week.

We truly are appreciative of all the support out there, this is shown not only in Charity2Charitys generosity to us by assisting with the purchase of Ellies standing frame, but also the support and generosity of people getting behind the "Run for Ellie" which will be held on the 9 May 2010.

These couple of things is what is really motivating me to start a charity to assist families with children with WHS. (This has been a dream of mine for the last year)

There are alot of charitys out there, I know that... But my aim is to bring awareness to the community about WHS specifically. Awareness, which I hope in turn will help raise funds to assist these families with any equipment, therapy or aid that they may require. Things that will help these kids reach their best possible potential.

Luke asked me what I would call the charity.... my thinking cap is on, but would also be open to suggestions.

Now with my feet up on a Sunday morning... I am looking forward getting my princess back home..

Tummy time success!!!

YEP!! This is Elllie on her tummy, propping herself up on her arms with her head up....

YIPPEE!!!!!! 

This is one thing that Ellie has always struggled with, however 2 nights ago, Ellie was on the floor doing a sort of 'superman' pose with her arms and legs up and out and her head up, and I thought she is trying to prop herself up. So... with a little help from me, she got it...

She even went on to do it a few times today... I actually thought Ellie would never be able to do this.

You should see grin on her face when she is looking at herself doing this in the mirror.. it is priceless!

Occupational Therapy Fun!!!

Today we had occupational therapy at home with Ellie. Ellie totally amazed Laura and I

For a while now, we have been trying to get Ellie to roll purposefully towards a toy noise etc, but its hard to work out what motivates her to do this.

We have been trying to get her to reach for a toy and grasp properly. I have tried rattles, bells, maraccas, drums, music etc. Some times they grab her attention to start with but then that soon wears off.. Until today!!!

Today we used a 'vibrating long bendy toy covered with soft foam' No... that is not the technical term for the toy but that doesnt matter. What matters is that not only was Ellie interested in this toy, it held her attention for over 30 minutes.

I have never seen Ellie do what she did today... she rolled 'purposefully' towards it, she reached for it with 2 hands and pulled it towards her, she grapsed it with 2 hands and pushed it, she wraped her body around it just to get 'more of it'

BINGO!! We have found what motivates Ellie to do these things, its the vibrating sensation.. this may be because she has hearing issues...?? This may be because she working with 1 eye...???

Who knows... who cares.... it worked....

Yep, after therapy today I went to the companys website and asked for a catalouge... I am going to order one of this sensational toys.

Here are some pics!! Check out her perfect hand graps!!

250???????????????

250 what you say?? 250 is just a number...

How can it mean so much?
How can it have such an effect?
How can it make our little family 'smile'


Because 250 stands for the 250gr that Ellie put on since her last weigh in last week!!!!!!!!


Ellie has been loosing weight for about 7 weeks now... And in her whole 20 months of her life, Ellie has never put that much weight on in only 1 week.

Yes, we are happy!!

What have we done different..?? Not a great deal. To be honest we were very surprised. The only thing different is 2 things. Ellie has had 1 extra bottle for the last 5 days, because she has wanted it.

The second thing which we have only just started 2 days ago, is going back to giving Ellie all pureed food, so no chunkc, no textures, just smooth food.. So last night for dinner she had butter, cream and cheese covered potato bake, & then tonight she had pumpkin + potato bake... all pureed... and then followed with custard and milk. A speech therapist we saw this week recomened this as she feels Ellie finds it hard to get food and drink down, and yes that includes custard and milk, so we need to make it as easy as possible for her

I still find it hard to beleive that Ellie has put on 250gr in 1 week, and dont actually know where that fat is hiding... maybe in her toes... I actually told the health centre nurse that if today Ellie had put on even 50gr I would have walked out with my head held high and a smile on my dial.. Imagine my 'grin' as I walked out after hearing her massive weight gain

Tonight I am cooking Ellie a caserole in butter, beef stock etc that we can puree and mix with other food. It smells DEVINE!!

Another weigh in 1 week... stay tuned...

Only 3 weeks to go till - A Run for Ellie

A Run for Ellie was an initiative by a couple of friends Jeff & Tracey to raise funds to assist with Ellies medical and future therapy and aids costs.

So far there has been quite a bit of interest from some people wanting to do the run or walk. If you are interested in participating with us you will need to register for the Mothers Day Classic at www.mothersdayclassic.com.au as this is the run/walk we are competing in

Also if you are participating in the run/walk please email me at, melissa.young80@yahoo.com.au
and reqeust the flyer for the run and details of where sponsorship money is to be donated, so you can forward this onto family and friends.

We are also looking at holding a BBQ Breakfast along the Yarra or at Albert Park afterwards for those that participate. It will be a great way for us to Thank everyone and catch up with everyone after the race.

Thank you all for your support!!!

Instead - By Huygen Hilling

"Instead of walking with you, I will crawl with you. Instead of talking with you, I will find ways to communicate with you. Instead of focusing on what you cannot do, I will reward you with love for what you can do. Instead of isolating you, I will create adventures for you. Instead of feeling sorry for you, I will respect you." 

I came across this on a FB page of another mum who has a child with WHS. This poem really rings true in our life with Ellie. Yes there has been times when we tend to get bogged down with what Ellie cant do.. But we REALLY do celebrate the things she can do, the small acheivments.  

As I have also blogged about MANY times, we get looks, comments, stares etc when we are out with Ellie. Yes this bothers us...

Yes this upsets us... 

Im scared of how it will be when she is older... and understands more

Do we let this stop us from going out with Ellie, Taking her out for walks, plays, and create her own adventures....??  ABSOLUTLEY NOT. Thats one thing we have never done, we have never hid Ellie or sheilded her from the world. She has as much right to her own adventures as any other child. 

Ellie will be what she will be... Its up to us to help her be the BEST that she can be

All this hard work wears a girl out

This morning Ellie had phsio. I really look forward to Ellies physio and OT sessions, as we normally work Ellie quite hard, and its satisfying when you see her do more or acheive more than the last session....

Ellie has had about 1 week break over Easter from all therapy as we were away. I have to admit its nice for me and also for her. However 1 week break makes such a difference. I have noticed this week as I was playing with Ellie that her arms werent as strong and she tired quickly.

So today in our physio session Ellie was up in the standing frame, playing with toys, and looking sided to side whilst standing. She was upright for a good 10 minutes. We also had her playing with a vibrating bar, whilst in the standing frame, that she loved... She kept trying to put her face or mouth on it... Need to invest in an electric tooth brush for her to play with.

After all this standing Trish thought it would be  good idea to see how Ellie was going with kneeling on all 4's and sitting... However once Ellie was out of the standing frame, she just dozed off... She was exhausted... check out the photo!!

Deaf school appointment

I Blogged a while ago about wanting to try sign language with Ellie, as we are aware that many kids with WHS are non-verbal. I suppose we are just trying to be proactive in case Ellie doesnt talk. However now it is even more important to try and bring a different form of communication into Ellies world other than talking as even after having the grommits Ellie still has a hearing loss at about 40-50 db (this is classified as a mild-moderate hearing loss)

A couple of months ago I met with some people from a deaf school in regards to what is available for Ellie and me wanting to work on forms of communication with Ellie. Today we met again, and they answered some more of my questions. I also got taught a few signs, such as Mum, Dad, Food, Drink and Play... so I am hoping to give these a go starting from tomorrow... I am intrigued as to how this will go and very hopeful that Ellie learns some of these... I would love for her to be able to commuicate with us. Im sure it would make her life alot easier.

This week we also have Physio, Speech therapy, and a weight check.

P.s Update on last weeks weight check. Ellie lost weight again. I was sceptical about the previous weeks weight check as it was on a different set of scales. Heres hoping weight gain comes soon!!

Some pics from our Easter holiday

Ellies first go on a slide with her cousin Liam

Pure JOY on the swing... Ellie LOVED it

Ellie hanging with her cousins

Opening easter gifts

Ellie the Easter bunny

Fun at a farm... first time for Ellie