Isabella's Big Dreams

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School Christmas Concert

Posted by isabellasbigdreams on December 6, 2013 at 7:10 PM Comments comments (0)


Izzy has been chosen to be a Camel in this years nativity which she is throughly looking forward too!

Pictures will follow next week after the concert :)

Legoland

Posted by isabellasbigdreams on December 6, 2013 at 5:10 AM Comments comments (0)


I had the opportunity to take the children to Legoland thanks to Merlin's Magic Wand who kindly gave us the tickets to go as it would've been to expensive for us all to go as a family 


Izzy had so much fun even though she was too small for most of the rides and the weather wasn't great she had a fantastic day :) 

It was lovely seeing her happy and the staff there were great in understanding her disability too.

Always a bonus to have understanding people working in a tourist attraction! 


Photos of our day are in the album.

Child Growth Foundation UK Convention 2013

Posted by isabellasbigdreams on December 6, 2013 at 5:05 AM Comments comments (0)


We all had a wonderful time yet again at the convention, our second year of attending! Izzy met with friends from last year and also many new ones.


The speakers once again were all fantastic with great information for us parents/grandparents etc.

The girls all had a great day in creche even though they were all seperated into different groups this year.

Looking forward to next years one now! 

Photos of the convention are in the album :)

Izzy's new wheelchair

Posted by isabellasbigdreams on August 14, 2013 at 3:00 PM Comments comments (0)


Yesterday after a long 3 month wait, Isabellas wheelchair arrived :D 

She is very happy and looking forward to using it and showing her friends in school when she returns in Sept! 



Trike Assessment

Posted by isabellasbigdreams on June 27, 2013 at 8:50 AM Comments comments (0)


Izzy has had a wonderful time trying out the Tomcat trike this morning, the growth hormone has worked enough that she can reach the peddles(stirrups) the left leg is perfectly flat on them but the right is lifted slightly due to her asymmetry but that will be corrected at our next orthoptic app! :)

Now to apply for funding once we get the quote in writing £1500!

But will be money well spent if it means Izzy can join in for bike rides and also improve her muscle tone and she can have it in pink!!

Fantastic trike parent handle controls steering and brake which is fab!

So pleased that Izzy's growth has made it possible for her to have one :)

Will update once funds available and trike ordered! 

 

Latest genetic news

Posted by isabellasbigdreams on June 13, 2013 at 7:25 PM Comments comments (0)


News from our latest app with the geneticist...

 He managed to get hold of Izzy's MRI results which showed a hypoplastic pituitary gland, her pituitary gland is very small at the front (which explains her growth hormone deficiency) and coincides with her RSS.

He said that she will need genetic tests done when she is a teenager just to update them (and hopefully by then they will have more knowledge on RSS)

She will also need to see them before planning children although a long way off he doesn't think she will have an RSS child (not hereditary) the UPD7 that she has is very rare and he is looking into whether her ghd is linked to her toileting issues so should be interesting to find out...

 

His estimate for her final height is 4"6 he said we are probably too optimistic to look for a height of 4"9 which is slightly disappointing but with the gh hope to increase 4"6 by an inch or so, Only time will tell...

 

Also had a phone call from a disability swimming instructor and am pleased to say she had 1 slot left, and Izzy will be starting 1:1 swimming lessons on Friday evenings at £15 for 30 mins not cheap but hopefully very beneficial to Izzy! :)

Research study

Posted by isabellasbigdreams on June 13, 2013 at 7:20 PM Comments comments (0)


Isabella took part in a research study in Birmingham last week, where she had bloods taken for a variety of things to help with the research of RSS/SGA 

Izzy was so good having her blood taken that she didnt cry once, that is such an amazing achievement for her, very proud moment that was for me :)

There is a picture of Izzy having her bloods taken in the photo section

Thanks to Renuka & Wendy for being wonderful with Izzy and helping her feel at ease with everything...

Look forward to seeing Renuka again in October at the child growth foundation convention :)

Izzy's birthday

Posted by isabellasbigdreams on June 13, 2013 at 7:15 PM Comments comments (0)


Izzy turned 5 last month and had an amazing birthday, she had a great entertainer 


http/www.littlemonstersparty.co.uk/parties.htm


Pictures from the day can be seen in the photo tab...


Happy 5th Birthday Izzy!! :)


Wheelchair

Posted by isabellasbigdreams on June 13, 2013 at 6:50 AM Comments comments (0)


We had Izzy's wheelchair fitment appointment on the 24th May.

It went well and we should have the wheelchair hopefully within 6 weeks

And it's hopefully going to have pink wheels...

One happy girly...

Only downside is that her leg discrepancy is 3cm on her left side (longer) so getting worse :( 

Finally a confirmed blood diagnosis

Posted by isabellasbigdreams on May 8, 2013 at 2:05 PM Comments comments (0)


I have just come of the phone to my geneticist and have finally got confirmation Izzy has RSS MUPD7

Such a relief to finally have my suspicion (original diagnosis was me, and have had to fight for so long) confirmed and Dr Stanhope's too!

So so happy...One less thing to fight for! (Hopefully)

Always keep fighting for something you believe in!! :D 


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