Wednesday, 26 January 2011

Disconcerted?

Possibly.

I'm feeling a little deflated at the moment. You work hard, put everything into keeping your child healthy, but in the end, it's totally out of your hands.
There is only so much you can physically do to prevent something throwing a huge jumbo sized spanner into the works.

Knowing that you need to react appropriately and the decision to delay that reaction can set a chain of events spiralling out of control if your timing is off.

Sophie is definitely brewing something, coughing most of the night. Cf mommas will know the cough I'm talking about.

The one you dread to hear.
The one that upsets you.
The one that keeps your baby awake.

Another Cf mom wrote a very interesting post, you can view it here. Margaux has a beautiful little boy called Ben who currently has a cough similar to the one Sophie has at the moment.
She brings up the subject of antibiotics and not reacting too quickly if not necessary. We try this approach too, sort of wait and see how things are going to materialise before we jump straight to antibiotics for Soph.

We will also get sputum cultured before anything is started just in case Sophie decides to bring something new to her own private lung party. Treating blind isn't always the right way, but sometimes, it cannot be helped.

It's the feeling of being in limbo I detest. How long do you leave things before you have to take action, normally we get it spot on but there is always going to be a time when we leave it longer than we should have.

For now we wait as Sophie is still bouncing round. Just a persistent cough that certainly sounds more 'throaty' than 'chesty' at the moment. Her team are aware of the current state of play.

I am hating the unpredictable nature of CF, fine one minute and then BAM, illness sets in. I just hope Sophie can fight this one off easily. I feel bad for her, she's just started pre-school and is loving it.

I don't want her to have to miss anything.


Sophie made this at her nanny's house while I was at an important meeting discussing the next stage of her eating development...







I was supposed to be discussing the eating side of things in this post but I got a little distracted. You'll forgive me this time right?


Take care and please swing by Gem's blog, she's just passed on the bad news that Lauren is not doing so good right now. Her blog is on my blogroll (Getting just a little breathless) but she hasn't updated in a while. She's a strong, beautiful young woman with CF, and could really do with all of your collective mendy thoughts right now.

Thank you xxx

Tuesday, 25 January 2011

First week and added extras.

The first week is over and Sophie is already into her second week of pre-school.

Time certainly shoots by.


This is her official school picture I had to snap a copy of it, she looks so happy (although the lighting has made it look like some of her teeth have fallen out, they haven't!)





To summarise, it has been a fantastic week for Sophie, she has loved almost every minute and bounces out of bed every morning to get ready for 'big nursery'. The teachers are getting to know her now and are asking questions as and when things arise. We had one less hindrance to deal with as Sophie is still pancreatic sufficient, so we haven't had to sort out the school giving enzymes.

One issue has become apparent though. On a Thursday they do PE (sports) and are expected to get changed into their PE kits, however Sophie totally freaked at the idea of getting changed. The school are happy for her to participate in her school clothes until she gets more used to them.

Knowing Sophie, I'm not sure if she'll come round to the idea or not. She still has her anxiety issues stemming from the amount of hospital experiences she has encountered. Taking her clothes off in a strange environment usually means needles are coming or her mic-key button is being changed etc

Does anyone have any suggestions? Do we just ride with it and give her some time to adjust?

Both Ian and I have had quiet little talks with her and she is fine with everything but has absolutely no intention of allowing them to change her into her PE clothes. I even suggested one of us going up to help her and she still wasn't going to accept it.

Health wise she is doing great, however we have restarted her saline as we have noticed a slight change to her cough and productive levels. Her CF nurse is happy with this.

It's hard to decide if she is starting with something viral or whether it is the drop in this particular treatment. I guess time will tell, she's super well in herself though. I'd be surprised if she doesn't come down with something as the change in environment from nursery to school is likely to effect her. She has new germs to get used to and you always have at least one child who constantly has a green, snotty nose! Luckily Soph is still a little OCD with her hand washing :)


More to follow in my next blog post about this part of Sophie's life...

Her eating issues.





Click here to donate to Ian's skydive.

Take care everyone xxx

Friday, 21 January 2011

Linky linky.

Hello all.

Here is the Just Giving link for Ian's Skydive on June 12th 2011.

http://www.justgiving.com/Ian-Ravenscroft

EDIT-(For non-uk residents select 'I am NOT a UK taxpayer' and it will accept it fine, any problems let me know and I'll sort out an alternative method).

I know we are a long way off, but if we don't start fundraising now, we wont get close to our target and I'd love for Ian to be throwing himself out of the plane with a good amount raised!

If you can help in any way, no amount is too small. Every penny will be appreciated.
I understand that everyone is struggling with money at the moment, and it's times like this when charities really suffer. Please help in any way you can.

I wanted to ask all of you lovely bloggers a favour. If at all possible, could you link to either our blog or the Just Giving page in one of your blog posts?

You may just help us meet our target by reaching an even wider audience.

Much love and I promise a round up of Sophie's first week at Pre-school in the next post. I have questions!!

Thank you all.

xxx

Wednesday, 19 January 2011

Is divorce a better option?

There are many ways to leave your spouse but Ian has certainly thrown a trump card into the mix.
Instead of going about proceedings in the conventional way, always wanting to be eccentric, he has chosen a very odd method.

Before you all begin to wonder what on earth has happened and why I would be blogging about such intimate issues allow me to explain...

My brave and crazy husband has decided that now is the time to do some fundraising for Cystic Fibrosis.

On Sunday the 12th of June, 5 days before my 30th birthday, Ian will be doing a SKYDIVE.

Yes you read right, he'll be throwing himself out of a plane at a stupidly high altitude and relying on a small amount of cloth and some string to stop him from smashing into the ground at a high speed.

All sponsorship raised, will be given to CF research to help contribute to finding a cure for the devastating and fatal condition our beautiful daughter has been born with.

I am turning to the blogging community to help us raise as much money as possible and will be setting up a just giving page. Any amount you can donate will be worthwhile. £1, $1, anything..

Please help us to help our children, there isn't a lot we can do as parents other than all of the day to day care, but money ploughed into research WILL help.

If anyone is able to help us in anyway to raise as much money as possible we would be so grateful. Link to our page etc

Just look at my header picture, is she not worth it?


Thank you for all of your lovely comments on my previous post, Sophie is still loving pre-school!!

I will post the link to the just giving page as soon as possible.

Much love and take care.

xxx

Monday, 17 January 2011

First day of pre-school.

Sophie started her first morning at pre-school today. She will be doing 9-12, Monday to Friday.

Slight culture shock this morning getting her up so early, she's always slept in a little later as her previous nursery was in the afternoons. We had been doing tactical training since we knew she would be starting Monday. She is now in bed by 18.30 and waking bright and breezy at 07.00.

When she came downstairs this morning, she had a very confused look on her face and kept saying "Mummy what's happening, it's not morning yet"?
To be fair it was a very dark morning today and I had to explain a little about how some mornings are darker than others.

We managed to fit all treatments in before she left and she seemed quite excited about starting 'big nursery'.

I had to be up there for half eight to meet her CF team. Yes they came out that quickly!!

We had a short meeting with a bunch of teachers and then Sophie arrived with her daddy. After 5 minutes she asked us to leave and we did!!

When we picked her up, she was happy and so excited, she'd had a blast and cannot wait to go back tomorrow.

The crazy thing is I didn't cry, does that make me bad?

Before you all think I'm some evil mummy, let me explain.

I had wound myself up so much over this. Whether she would like it there, whether the school could and would cope with her, how the other kids would react to her crazy, loud cough.

All I felt was utter relief and calm. I actually feel amazing and I'm so glad she loves it. Once Sophie decides she hates something it is very hard to get her to change her mind. This is non negotiable and she has to go (well September is mandatory) but if this had gone bad today, we would have had a huge battle to conquer.

Luckily she has accepted it and hasn't stopped talking about it.



As requested, the pictures...



This first one was before she went, as you can see she isn't impressed at all and it is the only one of her not crying at the camera..






Here are the pictures that now melt my heart but in a good way. She still needs to grow into her uniform as this is the smallest we could get. All taken after her first day there. Her cardigan is actually purple but looks blue on here...














Thank you all for your messages of support, so so appreciated and needed :)

Much love xxx

Thursday, 13 January 2011

So quick?

Ian and I met with the head teacher and deputy yesterday.

The school we want Sophie to attend is actually my old primary school. It was a strange experience walking the corridors again.
Everything seemed so much smaller than I remember, but the same feeling was still there. You see I loved school and had so much fun there.

We were escorted around the whole building going from class to class. Every room was filled with enthusiastic children who were busily going about their current activities. Some were colouring, some were working hard on computers and others were doing something very creative with paint, glue and newspaper. Honestly, I wanted to join in and then I remembered I'm now a grown up, I refuse to say old!

We all sat down after a surreal trip down memory lane and got down to business.

A small amount of anxiety oozed from Ian and I as we knew the school had every right to not offer Sophie a place due to her extra needs. Obviously they couldn't discriminate but they could decide that the environment wouldn't be 'beneficial' to Sophie (code word for too much hassle for our school).

Luckily after an hour or two of discussion, they felt that they could meet Sophies needs and were happy to offer her a place in September.

Woohoo and phew!

They are really keen to learn more about both of her conditions and would like her CF team to visit them, which I am really pleased about. They also wish to speak with her feeding psychologist so they can ensure they are doing all of the right things regarding her eating issues.

We were very impressed and I'm feeling much more stable over the whole situation. Well that was until they asked us to start her ASAP.

We have agreed that it would be more beneficial to Sophie and her teachers if she could start at the school nursery. To give everyone a chance to get to know each other before she starts full-time school in September.

So...

On Monday, Sophie will start proper pre-school!

We have had to dash out and buy her, her first school uniform-emotionally don't even get me started on that!!

We also had to go and tell her present nursery the news. Friday will be her last day there.

I cried, they cried.

They have been a huge source of support to all of us and I can only praise them for all they have done with Sophie.

So...

This is it, the issue I thought would occur in September is going to happen on Monday and I actually feel okay about it currently. To warn you all I will be a bubbling mess on Monday, that's normal for all parents right?

I will try and snap a few pictures of little miss in her sparkly new uniform if I'm stable enough to even work a camera and providing we can actually get her to wear it!!

Thank you all again for your lovely comments.

Take care and wish Sophie (and us) luck. I hope she likes it there...

xxx

Tuesday, 11 January 2011

Mixed emotions.

We have not long got back from the hospital, Sophie has had her port flush done this morning.

Huge improvements made and next month we will attempt it without sedation. We all feel she is ready to at least give it a try. I cant say I will be sad to see the sedation stopped as although it has been a huge help to Sophie in reducing her fears, the after affects are always very tiring.

Since she has gotten older and bigger, she has become harder to keep safe when 'under the influence'. All she wants to do is try and run around and when her legs are like jelly and not wanting to do what her brain is telling her, it makes for a traumatic couple of hours.

However cute and funny 'drunken' Sophie is, the anger and violent side is somewhat unpleasant :)

She didn't want to leave the ward at all today. We eventually got away after lots of bribery with half a dozen stickers, a piece of toast, her Christmas present from the CF team, 3 pictures of Thomas characters that Sophie made her CF nurse print off the computer and a small NHS bed sheet!

Here is what she wanted the sheet for (really blurred, sorry! and stood by a very dirty hospital door :D)


Super Soph!!






It took me over an hour to get her back to the car. She was just able to walk and wanted to explore EVERYTHING. She managed to lead me into an area of the hospital where the staff have their breaks. She stood for 10 minutes pulling faces at them through a window and swaying like a mad woman.

This would have been fine if it was staff that knew her and knew she was 'under the influence' but this group of people were obviously unsure of why she had such strange behaviour. I'm surprised someone didn't come out to us in the end!

I was able to navigate her back to the car eventually and we made it home in one piece where she has 'sobered up' well now.

Tomorrow is the day we meet her (hopefully) new headmaster. Thank you to everyone who responded to my previous post. I'm a little calmer and excited for Sophie now. Sophs team have said if the school want them, they will happily go to the school and talk to all the teaching staff and answer any extra questions they have. I'm really impressed that they would go to the trouble for us. Her CF nurse, dietician and physio would go. We'll see what the school say tomorrow.

Cough swab results are back and nothing extra grown other than her usual resident, Pseudomonas so I'm content with that also.

So all in all, everything is going good for Sophie.

However...

We've had some very sad news in the CF community. 10 year old Matthew lost his fight to CF on Thursday 6Th January following a massive lung bleed. I feel so numb for his family. He was just entering the evaluation process for lung transplant.

10 years old, it's no age and it brought back all of the emotions I felt when Conner lost his battle at age 7. As much as treatments have moved on, CF still takes no prisoners and still takes children. I just want to send my sincerest condolences to Matthew's family and friends at this very very sad time.

Breathe easy now.

xxx

Friday, 7 January 2011

A Date with the Headmaster.




We finally got round to calling the school we want Sophie to attend in September. We had been given some wrong information a couple of years back and the secretary was very keen to get us in to meet with the headmaster ASAP.

So next Wednesday, Ian and I will be meeting with the head and deputy. I was always good at school so have never been summoned to the headmasters office before. I'm already nervous!

The deputy head is in charge of Senco which deals with the special needs affairs. Although I do not see Sophie as having special needs, she does have extra needs so we are keen to see how they can accommodate her in the education system whilst ensuring her health needs are always at the forefront of their minds. I have already produced an 18 page document (with the help of a wonderful CF mum) outlining both of Sophs conditions, her extra needs and what the school needs to do to ensure her health is monitored while in their care.

Sounds a little obsessive but we did similar for nursery and they were so grateful we had as they could refer to it and also ask any questions that popped up along the way.

I cant believe Sophie will start school in 9 months time, she's way too little in my eyes but I know it will do her the world of good. It's a hard thing to deal with as a mum at the best of times, but add into the mix, not one but two serious health conditions and you can imagine how I am feeling about the whole situation.

Learning to trust a whole group of strangers with your child's health is hard, I don't do it well even when we have known the people a long time. See my multiple questioning of her doctors for evidence :)

I guess we will see how Wednesday progresses and go from there.

This is one mum who is definitely apprehensive about cutting the apron strings so soon.

On the other hand I cannot wait for Sophie to experience the joys of living life to the full, learning new things and having many wonderful experiences and adventures. She's a very intelligent girl, we realised this at a young age and school will challenge her in so many ways I hope.

Does anyone have any experiences or words of advice or encouragement?

Nine months from now I feel I'm going to be a bubbling mess at the school gate after dressing my tiny little girl in her school uniform!








The only place Sophie isn't wearing her cycle helmet is bed!






Take care all and thanks for the lovely comments.

xx

Tuesday, 4 January 2011

Bronch report. Sophie 1 - 0 CF.




CF clinic has been rather bizarre today. Weight up a tiny amount from the last admission and height has gone up too. Chest sounded clear on examination and tummy was soft and no signs of issues.

Sophie was so well behaved after waking from her slumber like a teenager and initially refusing to come out from under her duvet. Once at clinic, we met her psychologist who has made her a Thomas the Tank jigsaw puzzle. For every procedure Sophie completes at clinic, she gets to add a piece of the puzzle. Once completed we get to buy her a treat.

Sounds so simple but it works really effectively.

Cough swab was obtained with complete ease, we'll have the results possibly Friday or Monday.

Here comes the really striking news...

Her consultant showed us her bronchoscopy report and looking at all areas examined the results were as follows.

Normal.
Normal.
Normal.
Normal.
Normal.

One area, right upper had a small amount of mucus, not excessive at all, just the only thing the doctor could find to report apparently.

Sophs consultant actually expressed how shocked he was at the results. He expected there to be inflammation, sticky mucus and general nastiness, considering all that she has been through since birth and also due to her cultures.

This was not the case, there was NOTHING. He said he was most surprised about the lack of mucus, he said that most patients have an area suctioned and as the team re-introduce the suction catheter, that area has filled back up with mucus again.

He said he was more than happy with how things are despite the chronic pseudomonas. It was found on both sides, not just the right side as we had originally been told but it isn't an excessive growth and currently he isn't worried. He'd prefer it wasn't there but as long as it isn't causing any bother he isn't concerned. The situation will be monitored regularly and she will stay on her colomycin nebs indefinitely.

Now here comes the surreal bit.

We can stop all other nebulised treatments if we choose to.

Eh? Come again?

Yes you heard right.

He said he doesn't get to say this very often, but as Sophie's lungs are so very healthy, much healthier than anticipated we could stop the saline and her DNAse if we wanted to. The decision was ours.

We have decided to stick with the DNAse as without it, Sophs nose gets really bunged up and I don't want to cause any sinus issues and the saline will be kept just for when she starts with a cold or cough as an extra boost.

I couldn't be happier at the moment although a little shocked.

I think he may think I am slightly insane as I kept saying, 'yeah but what if...'.
I was just thrown right off guard with this and I prefer to not become too complacent with Sophs CF as it already has proved how quickly things can change.

But for now, I am going to try and not worry. We will continue all preventative treatments and physio and throw in loads of exercise. Basically carry on as we are as clearly we are doing all the right things for Sophie currently.





We bought her this new bike as her old one wasn't particularly great or safe..










It's freezing cold, dark and miserable but she insisted on going for a spin...










She's soon got the hang of it and I was breaking into a sprint just to keep up with her, luckily she was heading straight at daddy :)






Can you see why I need a new camera!!? ;)

Take care all

xxx

Monday, 3 January 2011

2011

Happy New Year!

Okay so I'm a few days late but you'll forgive that minor detail I hope.

2010 flew by so fast, where do the years go? I'm not going to do a month by month review of last year as I think it may turn into an epic blog!

Significant events of last year include,

-our first family holiday in years which was lovely.
-Sophie got her first port fitted-her beloved Bertie, and our first home IVs.
-Too many IV courses for my liking which failed to eradicate Pseudomonas in the end.
-First culture of Staph, which proved to be a little bit of a tinker to Sophie. Luckily he has left the building for now.
-First bronchoscopy which gave us a clear picture of Sophie's windbags and very promising results.
-Sophie has started to improve with the hospital environment and now clinic visits are much more calmer for all involved.
-Tube wean has finally started. Here's hoping 2011 is the year Sophie becomes an eater!

Poignant memories include, the many losses in the CF community this last year has brought. Many who leave a lasting legacy in all of our hearts and the wider community. Also love to all who have lost a loved one.

Acceptance came with the realisation that Sophie is colonised with Pseudomonas and this bad beast is here to stay. Luckily for her, currently doing no more than just showing up at the party when a culture is needed.

Shock at finding out I was pregnant and then sadness when it ended in miscarriage.

2011 is bringing us a couple of milestones. Sophie will turn 4 and will start school in September, to say I am apprehensive would be an outrageous understatement :)
I will be turning 30. This just sounds absolutely absurd as I still think I'm 16 in my head!
Sophie will be starting swimming this year, which I hope will do wonders for her health and I will be pulling my finger out and getting back into running to start Marathon training again. I will be counting on you all to kick me up the backside if you aren't reading about my progress on here.

Just wanted to say a huge thank you for all of the camera recommendations, we have a few in mind and hopefully some decent pictures will start to appear in the near future.

I also want to express my hopes for the future and the exciting drugs in the pipeline, which may come to fruition this year. The Vertex trials in the states and the gene therapy here in the UK. I don't care which comes first as long as something will help all with CF!

I hope you all have a very happy and healthy 2011 and thank you all in blog land for the support you have given us since I started this blog. It means more than I can articulate.

Much love.

xxx
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