Tuesday, 15 February 2011

Update from Monday.

Well Monday was super busy this week.

I joined the meeting at Sophie's school along with her CF team, her school nurse, the deputy head, her feeding psychologist, one of her teachers and a nursery nurse.

The idea was to get everyone in one room and formulate Sophie's care plan ready for September. It went well, the school are happy to have Sophie in class if she is having home IVs and her port is accessed.

This is a huge weight off my shoulders as I was concerned they may be reluctant to have her there when she is just having a 'service'.
During a tune up, Soph isn't unwell as such, she just needs the extra boost to flatten Mr Pseudo when he is getting a little frisky in her lungs.

I'm also totally impressed with the CF team who are willing to come out at any time to speak to the school or as Sophie gets older, her class mates too should the need arise.

Her feeding psychologist was also amazing, she gave them Sophie's story and all of her needs in very understandable terms. Basically what they should and shouldn't be doing regarding meal times at school. The school really seemed to grasp why Sophie doesn't eat but also understood how much ground work we had already done and how far she has already progressed.

Basically they now know what to avoid to prevent any undoing of all of our hard work, which pleases me greatly.

Her nursery class are going to incorporate more 'food days' into class and have a vast array of characters who help explain eating etc

I was so very impressed with everyone, we have struck gold with the entourage Sophie has to help her over come her issues but also allow her to have a smooth School experience and not stand out like a man with a vacuum cleaner.

After this meeting, I picked Soph up from class and we headed over to the picnic group. We had a lot of fun. This weeks theme was 'smells'. Sophie had the opportunity to smell a lot of different foods and also taste them if she wanted.

We all had a lot of fun playing with different foods and almost having a full blown food fight at one point (all in the aid of therapy!).

Sophie made some progress this week and actually chewed on some leek, ate some garlic bread, licked some mint and sucked on some orange. She wasn't particularly impressed with a sugar doughnut though, she didn't like the feel of the sugar all over her hands.

So all in all, the sessions seem to be working, it's quite exciting.

Just before we left, Sophie was given a biscuit and a juice drink. She licked all of the creamy bit out of the middle of the biscuit and actually drank quite a bit of juice.

Looking rather pleased with herself...

and in case you didn't notice, look how much juice she drank!

It may not look like a lot but this is a significant amount for Sophie. She hasn't drank anywhere near that much in one sitting since she was 4 months old.

Progress I tells ya!

To finish the day off, Ian and I went out for a meal to celebrate being together 13 years and how could we have left Sophie behind?
She managed to do well during the meal, she tried some garlic bread, chewed on a carrot stick and dipped it in various sauces, drank some lemonade and ate a small amount of ice cream. What a star.

I will let you all know how the port flush went in my next blog post. Hope you are all okay?

Take care.


  1. Thanks for this informative post. Tell me, is it typical that a CF care team will make visits out to a school? Has anyone else been as fortunate?

    We're in Iowa (USA) and the task of educating our school team falls upon our shoulders. I wonder if any other states have care center teams who plan such approaches/presentations?

  2. This is actually the second time Sophs team have been out to see the school. I'm not sure if we are lucky or whether it is standard practice here (we are in England).

    We did a document with detail about both of her conditions which I can mail over to you if you want to have a look at it for some pointers?


  3. So glad to year things at the school are going so well, what a huge relief for you! Sounds like you are all doing everything necessary for a smooth transition in Sept.

    Great news on the food/drink front too :) xx

  4. I'm glad you posted here. I hope my question gets some airtime and good discussion. Also, thanks for posting on my page b/c I probably would have spaced off coming back for the answer - what can I say, other than I'm like that?!

    I'm going to a our first ever parent advocacy meeting tonight at the hospital. I plan to bring this up. Not sure if I need your notes yet but if I do, I'm not at all shy to ask.

    Anyone else out there have a similarly awesome team?? How did it come about?

  5. Wow - it's so great that everyone is on the same page to help your little lady. Wonderful news! And way to go Sophie on the progress with food...a little rock start indeed. You are doing a great job mom! Hugs. :)

  6. Love to hear good news!! I think it's so great that you have a supportive team. How nice of them to come out to the meeting, definitely less stressful for you in the end!
    Go Soph!!!!

  7. I am seriously impressed by the school and your team. It must be such a massive weight off your mind. I love that first photo of Soph! It sounds like she's doing really really well with her eating which is brilliant!!!



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