Thursday, 28 April 2011

Happy birthday Sophie.

On the 28th April 2007, Sophie Ella arrived at 18:20 weighing 2.25kgs (4lb, 13oz).
What a roller coaster of a journey it has already been.

Happy 4th Birthday sweetheart, we love you so very much (I'm struggling to believe she is 4!).

Sophie, 16 hours old...

Lots has been happening this week and I will blog in more detail soon about how she wanted to spend her 4th birthday this year.

Here's a sneak peek...

Take care all.

(sorry for the lack of posts on here and comments on your blogs, blogger has been majorly playing up for us but I am informed the issue has been fixed now, lots to catch up on).

Tuesday, 19 April 2011


Well today was very interesting. Soph had her port flush and we took my mum along for the ride. I tried to mentally prepare her for how Sophie thrashes around still and that we still have to restrain her but once it is done, she's fine.

Sophie was in great spirits in the car and didn't appear too concerned about Bertie having his drink.
We arrived on the ward and went out to play for a while until her nurse was free.
After a short walk into a neighbouring ward, Sophie started to protest a little. I sat her on my knee and she allowed another nurse to remove her dressing that was holding the emla cream over her port to numb the area.

That went well.

Then her nurse grabbed her 'magic cleaning sponge' and Sophie again allowed her to clean over the skin above her port.

Again that went well.

Then onto Bertie's drink. Sophie put her own arm behind her back without us having to get all police arrest mode on her (she has to do this as she has a bit of blubber and it makes it hard to access her port otherwise).

Starting to think this is all too good to be true.

Her nurse then grabbed the needle, grabbed the port and Bertie was accessed without so much as a murmur from Soph.

Total shock and the best flush she's ever had. Not a single tear.
Soph sat there like an old pro and looked at us as if we were all mad. She could obviously see that myself and her nurse had our jaws dragging along the floor in disbelief at how well she had just behaved.


Due to how well she was cooperating, her nurse thought it may be a good time to test the waters with a chest xray. Bearing in mind that Sophie hasn't allowed one without sedation in a very very long time.

Remember the incident where she kicked the radiographer in the head and she practically threw us out of the department?

To say I was apprehensive was an understatement but we thought we'd roll with it.
To cut a long story short, Sophie stood in front of the film playing with a scooby doo toy, saying 'cheese' and allowed not one but two chest xrays to be taken.

Yes you heard right. No protest, no tears, NOTHING.

I am now one very proud and relieved momma. I think we may have turned one massive corner regarding Sophie's paediatric medical traumatic stress issue. Maybe it's age, maybe she is just getting used to it all now as she is able to understand what's occurring.

I just want to give hope to any parents who are struggling with similar. It really does get easier with time and a lot of work. I never imagined Sophie being like this and for the first time came home with no emotional or physical exhaustion.

My daughter rocks big time and is growing into a 40 year old :)

She is turning 4 next week too (28Th). There was a time when we honestly didn't think she would make it to her first birthday and I cannot believe where the time has gone. She is just like any other child her age but just happens to have CF and I hope this continues.

She is going to make a great teen, she already has the stroppy pose down to a tee!

Luckily though she still has lots of innocence and cuteness left...

Take care all.


Monday, 11 April 2011

The one with all the photo's.

Thought i'd better give you all a quick update again. Reason for lack of blog posts is we have been having lots of fun and Sophie is really well at the moment. Yes, I DID just say that :)

The increase of 100 calories per day to Sophs feed seems to be doing the job. She's back to her usual self and is starting to try more oral foods which is just what we wanted. Obviously a lot will depend on her weight at clinic in May and if she has still lost weight then we may be increasing it further.

Port flush is due any time over the next week and we are just waiting for a confirmation on the date. Will let you all know how we get on.
Other than that, all is looking good this way for a change so I will bless you all with a Sophie fest from one of her days enjoying the English sunshine!

Mmmmm, ice lolly

The fluffy object on the trampoline is Lulu, Sophie's pretend cat not a real one!

This makes me laugh, this is Sophs 'just about to launch into the air' face.

Almost up (A health and safety officer would have a field day with this!)

And we are up!

This is Sophie's wooden house, which she loves.

Okay I admit it, I was spying on her through the window.

This is how we keep our sanity from time to time! (seriously I am kidding)

Emptying out her 'stuff'

Blossom picking much to my horror. Majorly allergic I am but what the heck, she was happy.

I will be catching up on everyone else this evening. Hope you are all okay and I promise I wont leave it as long next time :)

Take care and thank you all for your comments. I love reading them.


Friday, 1 April 2011

To fatten or not to fatten...

That is the question.

Following on from my previous post, I spoke to Sophie's 'feeding' dietician yesterday. We talked for a good while, batting back and forth what to do. There were options and I like options...

Option 1 - leave well alone, which neither of us thought was even an option.
Option 2 - increase her feeds by a hundred calories and add this extra to her last feed of the day.
Option 3 - increase feeds by a hundred calories and add to last feed of the day but move around her day time feeds so she doesn't have such a huge gap in the day.
Option 4 - Re-introduce the bolus feed we culled last year.

We are trying out option 2 for now. Leave the times of her bolus feeds the same but just add in extra on her final feed. The thought is she has had a growth spurt, which is likely due to her shooting up in height and finally fitting into certain clothes now.
The growth spurt has obviously upped her metabolism and she has burnt off much more than she normally would, she is also super active and the two combined has made her feel starving and lose weight.
This has had a negative impact on her oral eating and all she can focus on is getting her tummy full via a tube feed as this is her normal.

When you or I are hungry, we pick up something to eat via mouth. Soph doesn't have this association due to never really eating or drinking orally so her cure for hunger is a tube feed.

We will try option 2 for 2 weeks and if it isn't enough for her, we will try option 3 and close the gap between her tube feeds. If this ultimately fails, we will add more calories to her feeds by possibly adding back in the feed we culled last year.

Lots of ifs but it's going to be trial and error. Soph is back at CF clinic the beginning of May and that weight will be so important and determine whether or not she needs her milk increasing further.

Neither I or the dietician want Soph to lose any more weight as she is now just perfect for height/weight, which is great but this means she has no reserve left in the tank should she need it.

The slimmest we've known her since her nissen fundo op..

School had also noticed her behaviour had changed, they said she seemed more short tempered and grizzly. Once I explained what was happening (she's hungry and this is her classic way of expressing this) they were on the same page. They now know the plan and are monitoring her closely to see if things improve or stay the same.

She already seems more content but it's early days. She has been waking up very late at night and crying to have a tube feed, it's been awful at times. Last night she was more settled and today she's happier for it. I'll keep you all posted.

Sophie came running out of nursery today beaming and had a gift for me...

She shouted 'happy mothers day mommy'.

She's also finally started to take an interest in trying to write her name...

Please pop by Margaux's blog who is Bens mom and watch this video. I have to be honest I balled like a baby but it shows the importance of raising money and the reason we all work so hard for our kiddos. Little Anna is so strong and beautiful and her family are amazing.

Link to our fundraising page for Ian's skydive.

Take care everyone and thank you all again for your advice and support.

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