About Me

My photo
Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Tuesday 31 August 2010

Thursday 22nd July....Off to Brompton...

Early start today....

its a hard day...
Last week when we went it took us 2hours to get there and that was midday. Today we need to be there for 10.30am, right in rush hour!! As we are staying the night there Grandad Bish is taking us and Grandad White will pick us up tomorrow. 7am gramps arrives. Mummy has just finished feeding me and daddy is now getting me dressed while mummy makes sure we have everything we need, its mainly my stuff. Mummy and gramps load the car up and 7.30 we're off. And so am i, off to sleep. I know i didn't wake up long ago but its tiring being this gorgeous hahaha ;) We arrive in plenty of time, about 9.30 so me and m & d wave off gramps and we go to the hospital cafe so they can have breakie. My time here is very exciting, i eat, have a poop and a wee then i snooze a little. Then i feel hungry again, but with all these different people coming in and out i don't think mummy has realised....Ill give her a nudge and scream.... that's pretty much how my 2 days go....

after a long day, me and daddy pass out...
We met lots of different people.  Firstly Katie, our cf nurse for the 2days. She pops in and out after everyone making sure we, i mean mummy and daddy, understand it all. She is very nice and explains alot about cf. So we met the dietitian who explains all about the digestive system part of cf. Because my pancreas doesn't produce the enzymes to break down and store the fat and protein in food, i will need to have something call Creon before anything i eat. Its ok, its like gravy granules. Mummy is told to give it to me with a little teeny tiny bit of apple puree, it goes down a treat. I start taking it today. As i start eating more, mummy and daddy will have to give me more. At least now, i should be storing all the fats and should start to gain a little weight steadily. Next we see the physiotherapist. She explains all about the 'tapping' on my chest m & d will need to do. I don't like this, it doesn't hurt, its just boring and a bit uncomfortable. I have to have this done for 15minutes, twice a day. We see the consultant, not sure what his role was. He just done alot of talking about the condition in general. As we started later today (not till about 11.30) that's all so we are left to ourselves for the evening. We watch a bit of tv then head off to the high street to find somewhere for m&d to have something to eat. I have had a long day so sleep the whole time, gave them a bit of time together. Then its back to the hospital to settle down for the night.....
snooze...

The next day we see all the same people, recapping yesterday and seeing how the Creon and physio went. I think m&d done a fab job. Didn't even realise they done the physio, think they done it in my sleep. We also saw a lady about the different benefits m&d can claim. Things like the congestion charge can be claimed back, every little helps. She will be there to help with things like disability living allowance etc. Then we saw a councillor. She offers support on our blue days and gives encouragement when you feel down. Lastly we say the pharmacist. He came in with what looked like a big bag of sweeties....how wrong could i be. He explained all about the medication i would need, starting today, and how it would change over time. So not only do i have the Creon and physio, i have to have antibiotics twice a day and 2 different vitamin supplements once a day. They show m&d how much and how to do it all now.....YUCK!!!!! These antibiotics are horrid :( the vitamins are quite tasty though. Oh well its just something iv got to put up with now.

Its 3o'clock now and we are all done and gramps white is ready and waiting to take us home.

Mummy and daddy go at it alone.....

That evening it was time for my yummy (joke) antibiotics and physio. This certainly is going to take some getting used to. But thats life....

1 comment:

  1. Ah well done to both of you, it is so hard hearing them words, you even feel like you are grieving for a while, then you see their beautiful little smily faces and nothing else matters, you are strong for them. My little boy was also 2 weeks when he was diagnosed with CF & we had never heard of it, me and my partner were both 26 and was a complete shock. Now it is second nature and we enjoy every month with our little boy. Remember we do not choose our special little babies they choose us cause they know they will be looked after properly and cared for. We are lucky to have them in our lives, you are doing a great job!!! x

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