Friday, 31 December 2010

Quick update!

Well time seems to have ran away with us lately. I'd love to say our MIA status was due to us flying around the world or finding the answer to world peace, but we have just been busy with day to day things i'm afraid.

We had a lovely Christmas though. I have had to work quite a lot over the holiday period so another reason i've not been blogging. All available time off has been spent spending time with Sophie and Ian and family.

Sophie was spoilt rotten and we have had to have a complete early spring clean of the house to find room for everything. Our house was beginning to look like a Toy warehouse and we have had a good clear out now. I can see my floor, it's fantastic!!!!

Update from the previous post.

Sophie's consultant has agreed to increase her saline strength further which I am totally surprised about, but ecstatic all the same. We have a re-scheduled CF clinic appointment this coming Tuesday so hopefully will be able to have a good look at the bronch report. I am also pleased to say that Sophie has managed to fight off this last cough/cold on her own with NO ANTIBIOTICS.

This is the first time she has managed this in a very long time and we are so pleased for her. She's managed to stay off anything since her IVs finished and long may this continue. She's doing really well at the moment and is growing up so fast, where does the time go!?

We also have her port flush in two weeks also.

I will leave you with a few pictures of Sophie from when we visited her grandad and nans over Christmas. Of all the presents she received, she loved her jar of marbles and another marble run. The old toys always seem to be the best don't they? The marble jar did attack her slightly later on though as it somehow managed to split itself in half and cut her finger, but one plaster later and a magic cuddle, all was well in the world again.

Quick question for all you budding photographers out there. I want to invest in a decent camera. It's only for taking good pictures of Sophie as the one I use isn't the best quality. Any recommendations? I couldn't handle anything too technical and don't want to spend an absolute fortune, just something that has a better result and able to take multiple shots to catch a very energetic toddler in action. Any suggestions?

Hope everyone is doing okay and having a lovely holiday. I will be catching up on all of my favourite blogs later today.

Take care xxx

Monday, 20 December 2010

Everything has gone green!

Well Soph had a busy time with nursery last week.

She had her nursery play on her first day back to nursery after having 2 weeks of IV's. To say she wasn't keen would be a slight understatement. She happily walked out with the small group she was with, but as soon as she clocked her nan and I she came running over to us and spent the whole performance, snuggled into my shoulder.

She did enjoy being back at nursery though, I think she missed bullying the boys if I'm honest. She also had the chance to go with a small group of nursery children to watch 'jack and the bean stalk' at a local theatre. I thought she would love it.

How wrong was I!?

According to her nursery teachers, she cried throughout the whole performance and only stopped when they started walking back to nursery. I asked Sophie why she didn't enjoy it and she told me it was because of the girl with the green face. I assume she meant the witch? It makes sense as Sophie hates Halloween and all the creepy masks etc

All normal experiences for her though and whether she enjoyed them or not, her CF wasn't even considered. This is something I am going to blog about in more detail at some point so I wont elaborate anymore at the moment.

Onto the health side.

Hmmmmmm, a double whammy of illness has occurred.
Problem one.
Sophie has been suffering from a tummy bug. Due to her nissen fundo op, she cannot vomit, she can 'dry retch' and bring up a little spittle but nothing else. This proves particularly problematic when she gets a tummy bug. Everything has to go south so a typical 24-48 hour bug can last weeks sometimes as it travels through her body.

I'll spare you the graphic details but put it this way, we started off with yellow poop which has now changed to a greenish colour and has a very striking aroma. The poor mite has had a few unsettled nights where she has been trying in vain to vomit all the nasty stuff out and the only way we could help her was to vent her mic-key button and allow some of her tummy contents to drain out.
It gave her some relief.

Problem two.

Sophie has a cold with lots of green, slimey boogers. I have to smile as she is only a week off of her IV's and picks up a cold. Typical! No need to panic just yet as she seems to be holding her own and fighting this bad beast quite effectively on her own steam.

We should be at CF clinic tomorrow but cancelled it due to her tummy bug, not the greatest of gifts to bestow on someone a few days before Christmas is it?

I have spoken to her CF nurse today and filled her in. We have oral antibiotics on standby just in case they are needed later this week or over Christmas, so I can stop 'what if-ing' about that now.

I am a little disappointed we cant make clinic as I wanted to see the full bronch report and also discuss increasing her saline strength. Sophs Cf nurse said they will still discuss this and she'll phone or text me later tomorrow with the outcome. I have a slight amount of dread that her consultant may suggest stopping it as her bronch was so good. My argument would be we don't know if her lungs were as clear as they were due to the help from her treatments. Problem is, we wont be there to fight our side if a battle does ensue so I have to wait to hear the outcome.

I'll let you all know.

On a brighter note, Sophie's mouth is clearing up a little and thanks for all of the tips and suggestions.

Take care and hope everyone is doing okay with all the cold weather. Thank you to all the votes sent our way. You can still vote by clicking on the previous blog post or the union jack banner over on the right of this blog. Thank you to This Mid 30s Life for nominating us. Go check out her blog as it is hilarious and maybe send some bloggy love her way and vote for her too.


Wednesday, 15 December 2010

Please vote and advice needed.

I had quite the shock this morning, I was reading a blogging friends post about how she is a finalist in the British Mummy bloggers -bloggers in brilliance awards for 2010. I went to have a look at how to vote and I was almost thrown off of my chair when I saw that our blog is also a finalist! This a huge deal as we're amongst the creme de la creme of mummy bloggers and I couldn't be more surprised if I tried!

We are in the Inspirational blogger category and actually up against two of our blog favourites, Mum in the mad house and crystal jigsaw, both blogs can be found on my blog list. I have no expectations of winning as we are up against some very strong competition and I feel a fraud us being there if I'm honest. I hope that this will help raise some huge awareness about CF and TOF so if you are reading this and haven't voted for anyone, please consider voting for us.

Vote here by scrolling down about half way and find the inspirational blogger category and vote for us!!

A big thank you to those who have nominated us, I am so very very grateful as you will have helped our main goal by raising much needed awareness for us and that is invaluable.

Right back to business, Sophie is still doing really well since IV's have finished. She does appear to have a small sniffle though but very well with it so just keeping a close eye in case she turns into the not so lovable snot monster!

Since her IV's started she appeared to be suffering with sore lips and small cold sores. I attributed this to her being run down and really not being well, however these all cleared up.

The past few days, her poor mouth has started to become really sore and now looks like this...

She doesn't appear to be run down at all,

Is it the weather?
Is it a CF thing?
Is she going to be a cold sore sufferer?
Are her nebs irritating or causing this?

All of the above?

Does anyone else or your child suffer like this? I cant use cold sore remedies as they are pointless unless you catch them at the tingle stage and Soph isn't really old enough to make that connection yet. We use a Vaseline lip balm to try and help the cracked lips but it doesn't seem to be preventing it.

Any thought or tips would be greatly received, she wont let me near her mouth which is entirely understandable.

Take care all


Friday, 10 December 2010

Guess what?

We're freeeee!

IV's finished a day early due to a pharmacy mishap with the amount of drugs supplied, but 13 days was enough for Soph and Bertie had his hair cut yesterday.

Iv's are over :)

Although they have been fairly problem free they are still tiring on all of us and we are all glad to see the back of them for hopefully a long time now.

Sophie is firing on all cylinders and I actually think she has developed a few extra ones as her energy levels are unbelievable and it is wonderful to see.

I am in the process (with a lot of help from my dad) in creating a video montage of how we prepared all of Sophie's meds. I had hoped to just do a straight video from start to finish but the whole process took 29 minutes and that wasn't including the pump time. Obviously that would be one huge thing to watch so we have taken stills from the video and we will produce something that should give you an idea of what it all entails to 'do it old school stylee' with home IV's.

After giving Sophie a well deserved and needed bath (we couldn't bath her as she splashes too much and water would have gotten under her port needle dressing and risked infection) we visited another indoor play centre to burn off some of her extra energy and get some good exercise as we all know how important exercise is on the old wind bags AKA lungs.

Sorry some of these are a little blurred, it was hard capturing stuff as Soph was so so active. Bonus was Ian and I were both able to run round in there with her. We are such big kids!

This girl has no fear of heights.

Soph even worked up a little appetite and tried a little beans on toast.

If any of you don't follow Worth his salt, firstly why not? It's a great read and the gorgeous Jackson's momma Amy writes so very eloquently. Secondly please check the above link out as Amy has helped create an eye shadow called SixtyFiveRoses and all proceeds are going to the cystic fibrosis foundation.

Great colour, great cause, make a great little present. What you waiting for? :)

Thanks and take care all!


Tuesday, 7 December 2010

Proud of my little girl.

IV's end on Friday and Sophie is 100% back to her normal self. Yay.

On Saturday we went to get her blood levels checked (tobramycin levels and kidney function etc) as it was day 8 of IV's.

The plan was to sedate Sophie due to how 'animated' she had been on the previous levels check. On the way to the hospital Ian and I discussed this and decided that we wanted to try without sedation. We explained to Sophie that the nurses needed to get some blood from her finger and fill a very small bottle with her blood. All they would do was gently prick her finger to do this. Once this was done, we could go back home.

Sophie seemed to accept this so when we arrived we explained to one of CF nurses what we had planned. Sophie happily ran onto the ward and hugged and kissed many of the nurses. This is a huge improvement in her behaviour and shows how far she has come in reducing her paediatric medical traumatic stress.

Only a few months ago we wouldn't have even got Sophie to walk onto the ward without a huge, physical fight. Picture wrestling a lion into a cage and you are half way there!

Her nurse was a little apprehensive about our decision but was happy to go with our plan.

Sophie sat on Ians knee, and the nurse pricked her finger and took the blood. Two small whinges and that was it!!

No wrestling.

No scratches.

No kicks.

No punches.

And no tears from Sophie. Awesome!

She even happily showed me her finger and told me the nurse had 'took blood from this finger, aren't I brave'.

I'm so proud of her and how much she has matured. The past two weeks, although tiring have been an absolute breeze in comparison to previous IV courses and it is all down to Sophie.

Thank you to everyone who has shared the CF video link I posted about. It's a great video and needs to be seen by all.

Sophie engrossed in watching Tom and Jerry at her nan and grandads.

I think the IVs have done something to Soph, she thinks she is a cat!!

Oh my...

Take care all.


Friday, 3 December 2010

Animated Cf video for children!

Please share this video as it is brilliant for educating children and adults. It's fab!! Thank you to everyone at the CF trust and to Oli who created it.

View here

Wednesday, 1 December 2010

Spot of bother.

You know how I said how wonderful and straight forward home IV's were going?

Can I retract that statement? :)

Minus the dramatics they are still going really well, but we ran into a spot of bother over night and especially this morning. Last nights dose seemed really stiff to push in and Sophie was complaining it felt cold.
Both Ian and I inspected the site as much as Soph would allow and we couldn't see any leaking, which would be a sign that the needle was dislodged and it was tissuing. We were due to change the bio-connector (posh end on the IV line that helps prevent infection and the line leaking blood all over the place if the clamp became loose)the following morning and sometimes they can cause port stiffness when due for a change.
This morning, we changed it and tried to flush the line...

It wouldn't budge, not even a drop would go through.

Hmmmmm. Is it the line or is Bertie on his last legs??

No need to panic, phone the CF team and arrange to get up to the hospital and get it re-accessed. Simple. Be there and back in a couple of hours.

That was until we looked outside and realised that we had had several inches of snow dumped around us. Grand!!

After a few frantic phone calls and Sophs wonderful CF nurse eventually able to make into work, we were able to navigate ourselves over to the hospital, Sophie was sedated and Bertie has had a new hair extension which works beautifully.

We've gone for a gripper needle as the one that was put in last week was much smaller and Sophs port is quite deep inside her and we think it probably wasn't long enough. This needle makes Sophie's port quite animated. It clicks every time she moves (this is the tip of the needle scratching against the base of the port and quite normal) and it sounds like she has a pod of dolphins in her chest :)

Either way it flushes grand and should now last the rest of the course!

Sophie managed to arrive in style at the hospital.

Take care all!!

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